Forced to Sit Still and Shut Up -- Life Before, and During ALS

Wheelchairs -- You can't live with them, and you can't live without them!!

2012-01-22T16:03:00.000-05:00

So the old wheelchair is gone, and the new wheelchair is in use, but I hate these new footrests. Yes, they keep my legs straighter, because they are two separate footrests each with a guide on the side to keep my legs straight, but they keep getting messed up. Last week, the little latch on the right footrest -- which is the one they just replaced -- that pulls the right footrest out of the way, snapped off in the aide's hand. Then the left footrest got all out of whack. To simplify, neither footrest goes over to the side -- the right one doesn't move at all, and the left one, only halfway. So it makes for a real challenge when standing and transferring. Thankfully, it doesn't compromise anything else. I can still go all the way back and put my feet up and stretch out and sleep. But standing and transferring from wheelchair to/from commode or bed is painful. Luckily, the wheelchair tech is coming mid-week to see if he can fix it on-the-spot. If not, then I have to see about getting a loaner. The woman I used to use at one of the ALS charities is gone, and her replacement leaves a lot to be desired, so I am hoping I won't need a loaner. Fingers crossed.

I still say that ALSTDI is the research facility to support. They are in the process of investigating a drug called Dexpramipexole, that is showing promise both in slowing down disease progression and prolonging life, so this looks promising. It is in Phase II of the drug trial. I can no longer participate in drug trials, because they usually require patients in the first 18 months of the disease, so I have to wait until FDA approval, which can take years.

The other advancement has been the FDA approval of a diaphragm pacer. You see, with ALS, difficulties in breathing are not caused by lung problems. Rather, it is the diaphragm, which is the muscle that goes up and down. The lungs can be healthy, but if the diaphragm weakens with the progression of ALS, the breathing is compromised and eventually it is the failure of the diaphragm that causes death in ALS. The diaphragm pacer works for respiration like a pacemaker works for the heart. In order to get the pacer, the patient must have a Forced Vital Capacity [FVC] of >50. Well mine is closer to 20. I was disappointed when I heard I am not a candidate, but I just read an article that showed me that the pacer is not life support. I thought it could keep a patient going indefinitely, but it can't. In the article I read, the patient still had to use a ventilator. Also, the pacer has wires on the outside of the body and I would still have to control it by turning it on and off, and be careful when I shower. The tracheotomy and invasive vent are still the only measures for life support and that is something I don't want to do for very complicated reasons.

I returned to the writing of my book and -- to my surprise -- wrote two more chapters. I have two more books in my head so I had better get moving. In this world of ALS, lack of a crisis and lack of drama, is a good thing. So I got a little bored and uninspired by anything else, and returned to my writing. I feel no urgency to go outside, and I have a new writing gig at Examiner.com writing about Rego Park and Central Queens, which I have been lax about promoting. So I figured it's a good time to finish this book, which is not the book I really want to write. A professional in the field told me that this book about my journey with ALS should be my first book, to introduce myself to readers, and then interest them in anything else I write. But I am having a hard time finding the thin line between writing what I know, and writing in a too-snarky and too-angry tone. The truth is that the first few years were painful and disappointing, and I have since found a valuable path and useful lessons I have learned about many different parts of life. I have learned forgiveness and how to find inner strength. But the beginning and middle were not like that. And the most important thing I have learned is that people say they want to know what it is really like to find out you have a disease like this in mid-life, but they really don't want to know. Although I sugar-coat or omit a few things, I also want to present the joy and wisdom which comes from an experience like this.

RIP MacBook, and how do you dispose of a wheelchair?

2011-12-01T11:05:00.001-05:00

I really meant it when I said I would update more often. But, as the saying goes "We make plans, and G-d laughs" Or, as I like to say, I am having really bad karma. It's as if some witch or voodoo queen has put a spell on me. To summarize, I have a brand-new wheelchair with one footrest, an old wheelchair stuck in full incline-- from which I had to be carried out -- taking up half my hallway, which I don't know how to get rid of, and a MacBook that just decided to die on me. The good news is that I have an iPad with a keyboard, that does about 80% of what my laptop did; the other 20% are pretty important, but I have found alternatives for most of those things.Where the hell do I start? I'll start with the laptop. I know eventually I need a new one soon. If you're a Mac person, it had a Leopard Operating system, and since then we have Snow Leopard, and now Lion. ButI wanted to wait until next summer when my home equity loan will be paid off and more credit will open on my reedit cards. I didn't want to open another credit source, nor did I want to try to increase my credit card limit -- which I am not sure they would do for me anyway. I don't have extra money to be buying a $999.00 laptop. I don't know if I ever will, in reality. So it took me a while to load the right apps on my iPad to be able to do some of the things I needed. I will bring my laptop into an Apple store after the new year, when I don't have to deal with holiday crowds. But I felt so discombobulated for a few weeks, because I didn't know how to do a lot of things on the iPad. Now it's my best friend, especially since the therapist at NYU/Rusk Institute got me a grant that paid for an upgrade to my Verbally speaking program, and a case with a bluetooth keyboard. Bless them!I wish I could say positive things aabout my wheelchair, and the wheelchair vendor. The name of the vendor will not be published here. But if you aare in the market for a new wheelchair, and trying to decide between vendors, please email me privately and I will give my opinion. Anyway, my footrests are a different style than the ones I had before. So getting on the Access-a-Ride lift was a challenge with a learning curve. The second time I was boarding, the footrests [they are separate for each foot this time] got caught up because I didn't tilt back far enough, and the right one broke off. You see, the only way I can board is to move up, tilt back a little, move up further, and tilt back. This is the only way the lift will work, because it's the only way to clear the yellow lines on the lift. So I emailed the wheelchair company, and told my rep what happened, and after a week I heard nothing. So I emailed again, and that day I got a call from the repair department, whoo said they would have to order a new footrest. That was two weeks ago, and as I write this, I am emailing unsuccessfully for an answer. I have a friend calling them by phone, but I haven't heard anything yet. I suspect they are playing phone tag. Oh, and the Purple Communications i711 relay calling I use, has an iPad app, but it's a bit "facocked" [sic], which is Yiddish for "messed up". Some iPad apps are better than on the Mac and some are not so good.So in the meantime, I still had the old wheelchair. I had called a certain ALS organization to donate it, but the person on the other end [again, no name] never got back to me [it's a freakin' epidemic around here -- nocallback-itis --]. When I called back this person after a week, he acted like a total knucklehead, saying that I probably ran the battery out after so long, and I had to recharge it for two nights in a row and make sure it was in perfect running order before they would take it. I reminded this less-than-professional poop-brain that it was HE that let my wheelchair battery run out by never calling back, and that I was trying to make a DONATION, not ask HIM for a favor. When I got off the phone, I thought "Now you're getting BUBKES [Yiddish for "nothing", "zilch"] and decided to go back to my original plan of selling it. Okay, so the next day, I lose the footrest on the new wheelchairm so I marvel at the good fate that the old wheelchair was still cluttering my apartment. I charge it up and it works perfectly -- for one day. I was all inclined back, relaxing my muscles and taking the pressure off my back. This break is so necessary for a wheelchair user, and also raises the feet to prevent swelling and aids in positio=ning because the gravity pulls the body back and eliminates the need for someone to pull the wheelchair user back [which is dangerous to both puller and pullee]. So there I was all relaxed in the old familiar wheelchair,, and when I tried to go back to a sitting position, the wheelchair would not budge. I have had this problem before, and the wheelchair vendor has taken it away twice to repair it and claimed it was all fixed. The two aides who were overlapping at a change of shift, had to do the risky move of lifting me out, and dropping me on the bed. The old wheelchair is still sitting there, waiting to be "junked" because this is not something that can just be put out on the curb to be picked up with the garbage-- at least I assume not. The wheelchair company will not take it, and won't answer my emails about what to do with it. And nobody seems to know. In a 400 square-foot apartment, a wheelchair in a perpetual incline position takes up a lot of apace, along with my other equipment, including the portable shower. Nobody wants it, and nobody will tell me what to do with it. And nobody will want to wheel it o=ut in manual mode.

Why I Stopped Ingesting Artificial Sweeteners and Processed Foods

2011-11-08T22:51:00.000-05:00

Boy do I wish I paid more attention in Biology class. I love reading the news from the MDA and ALS-TDI research front, but there's not much this scientifically-challenged brain can do with it. Right now, I am operating on a hunch that disease progression is triggered by stress and exposure to toxins, so I have eliminated a few things from my kitchen, and even from the restaurant table including [but not all-inclusive] and as a disclaimer, 99% of the time. Sometimes I might indulge as a "treat" but often feel crappy later. Whether feeling crappy is a real revolt of my digestive system, or ust in my head, doesn't seem to matter. If feeling crappy is a reminder that my indulgence is a bad idea, that's enough.

artificial sweeteners -- anyone who knows me more than 3 years ago, knows that Diet Coke, Equal, and any kind of beverage or food containing any kind of artificial sweetener was synonymous with my name. If I wasn't the single reason Diet Coke made profits, I sure wasn't hurting their business. Not one Diet Coke, Diet Snapple, packet of Equal or Sweet and Low has passed my lips in probably 18 months. Warnings from loved ones fell on deaf ears until then. What I love is when I express this at a support group, the attendees all ask "Are you getting any better?" No, you boob. But I haven't been getting worse. And no, I don't know if I would have gotten worse if I continued to ingest that poison, but it's not as if I'm doing something BAD for my body. This is something I should have done a long time ago.

Processed foods -- no frozen Lean Cuisine or Smart Ones or any frozen meals from the freezer section of the supermarket. Not only are they high in sodium [I have high blood pressure] but they contain other stuff most people can't pronounce.

No meat, especially red meat or deli meat. I confess to having a barbecued hotdog at the ALS walk in Long Island and another one at a church BBQ I was invited to in July, but that's it. A visit to Ben's Best recently didn't even convince me to cave in to that overstuffed pastrami sandwich.

I've substituted soy milk for almond milk with my cereal and in my smoothies because soy promotes estrogen, which causes breast cancer, of which I am high risk. All I need on top of ALS is breast [or any kind of] cancer.

I have actually had people say to me "You're dying anyway, so why not eat anything you want?" And my answer is "I don't need to have a stroke, heart attack, cancer or even an infection because it will be that much harder". Most of the people who I know who have had ALS have died from complications of some kind of infection, so why not protect myself?

As for scientific advances, the recent news has involved the mutation of the SOD1 gene. That is not to say that ALS is necessarily hereditary -- only about 10% of all ALS cases are familial, and the rest are sporadic. I have learned that ALS is prevalent in families with a history of Parkinson's Disease, and I have PD on both my paternal and maternal sides of my family. As far as I know, my dad's paternal grandmother and paternal uncle had PD, and my mom's deceased brother had it, and one brother who is still alive fights PD at age 85, but still travels between Oregon and California to visit kids and grandkids.

For those scientifically-minded, the latest research article from MDA talks about astrocytes' role in ALS and I provide a link to that article here. And here is another very good article about why scientists are finally not only concentrating on motor neurons anymore. Astrocytes are star-shaped [hence the "astro"prefix] support cells that usually protect motor neurons. However, when those astrocytes carry the SOD1 mutation, they cause neighboring motor neurons to deteriorate and die. Scientists have replicated this process in lab mice. What do I do with this information? All I can do is hope that this discovery will lead to a cure or more effective treatment. In the meantime, what caused MY SOD1 mutation? Did the artificial sweeteners or the processed foods I used to consume every day do it? "Who the hell knows?" as my dad would say. I have been a klutz since childhood so maybe I have had SOD1 genes in the womb. Again, who the hell knows. All I know now is that if anything has the potential of causing any more damage, I really don't want to consume it.

Part 2 Aug-Comm Eval + Independent non-chain restaurants in Rego Park, Queens

2011-11-02T15:01:00.000-04:00

Independent non-chain restaurants in Rego Park, Queens

Read my latest article!!

As for the second part of my augmentative communication [aug-comm] device evaluation, at Rusk Institute, this time I met with Hollie Cohen who does the actual evaluation for the machine. First we looked at my iPad, and she saw I had Verbally downloaded as a free app. This is a program developed by two Indian brothers for their mom, who had lost her speech due to ALS. This program is even better than my Mercury. Verbally has word prediction like the Mercury, which means that, when I start typing a word, the machine comes up with possibilities of words that it thinks I want. But Verbally goes one better: when I type a word, it comes up with options which predict the NEXT WORD. Example: I type "I" and it gives a word choice "am", Or I type "supposed" and it gives me "to" and "that"..... really amazing.

There was one big problem with "Verbally" and that was the voices. There were very few choices, and it was so soft and low that you could hardly hear what the machine was saying. So I have been using it and people have been reading my messages. Not the best way to use a speaking device, but I love the portability of the iPad, and of course, when I am out on the road and on Access-a-Ride, I can read my email, play games, and otherwise amuse myself.

So when I met with Hollie, I expressed my frustration at this shortcoming with Verbally, and she showed me her version [on her iPad], which had been upgraded for $100, and it had different voices, which had a higher volume we could hear, and the capacity to program phrases which could be saved. She also showed me other apps which were cheaper, and better than the free version of Verbally, but not as good as the upgraded Verbally.

On another subject, I often say that nobody knows or cares about accessibility until someone close to them becomes disabled, or someone like me fights for accessibility, as I did in my co-op. Before 1990, businesses and public places were not obligated to provide accessible entrances, restrooms, etc. And I can recall being at travel agent functions after 1990, and listening to travel agency owners whine and moan about the expense of putting in a ramp, or making other accommodations to make their businesses accessible. My friend Louise learned through knowing me, how important accessibility is, and became concerned about the lack of a ramp at her church -- St. Luke's -- in Forest Hills, Queens, so she set the wheels rolling a few years ago to build a ramp. They had to pass through the local organization which governs the historic area where the church is located, and of course draw up plans with a contractor who was familiar with accessibility. Luckily they didn't have to raise the funds because someone had left money to the church after her death. So this week, they began to build the ramp, and Louise is relieved. They don't have to wait until someone sues the church. They know the worshipers are not getting any younger. My point: if you own or are involved with any kind of establishment, make it accessible. It's the right thing to do. And people with disabilities should be independent, and not rely on someone else doing everything for them. People with disabilities are out of the house and in the community, and should be able to patronize every kind of establishment.

2011-10-14T10:38:00.001-04:00

You know what my problem is? Okay, okay, I can almost hear the one-liners:
"How much time do you have?"
"Call my therapist"...... okay okay
Or "Don't you mean problemS?",
My problem is that I almost don't want to update too often because I don't want my subscribers to say, "oy vey, not again". So instead of saying "they can always hit the delete button", I wait until so much time goes by and I have so much to say, that it gets overwhelming and I have so much to say, that I don't know where to begin. Then I get emails from my buddy Maddy, telling me to get my fingers on the keyboard. And, I read an article this week about good blogging practices, and the cardinal rule is to update often and regularly, so I believe in good practices. Therefore, blogging more often is what I must do.

As usual, there is so much going on. So I will talk about assistive speaking devices. Since it's been five years since I got my Mercury®, I can apply for a new speaking device. I say "apply" because Medicare says you can have a new device every five years, but it's not a given. You still have to go for an evaluation, and the evaluators have to write a letter of medical necessity. In other words, they still have to convince Medicare that you need a new one.

So I went to Rusk Rehabilitative Institute at NYU Medical Center. They're the best!! I recommend them. I hope you will never need their services, but if you are unlucky enough to need rehab from a stroke, brain injury, accident, or whatnot, Rusk is top-notch, along with the Hospital for Special Surgery of course, in Manhattan, Helen Hayes upstate and Kessler in New Jersey [this is for NY/NJ]. First, an evaluation by a speech pathologist. This is not just to determine that you can't speak, but to verify that you're in your right mind. I guess if they find there's too much dementia or other cognitive difficulties, the speech machine is moot, because you'll use it to say crazy things, or forget how to use it. That's just my guess.

Rather than talking about how insulting and condescending the line of questioning is, I just cracked up laughing, which caused the pathologist to finally say "I know these questions might seem silly to you, but just answer them."

Examples:
What weighs more, a pound of nails, or two pounds of nails?
Do you use a hammer to cut paper?

Anyway, also the pathologist asked me to talk, I mean really talk. And when I did, she said "Why don't you use your voice? When I look straight at you, I can understand you."

"Well", I told her, "First off, you are a professional. Secondly, as much as I tell people to look straight at me, they don't. Mostly they look the other way, and impatiently say 'I don't get you. Write it down'. Also, I have one aide whose English is bad, and even when I write it down, she doesn't get it. Even when my other aides speak to her in English, they want to strangle her in frustration. And then there's the voice. Its raspiness scares people. And then of course, there are the people who assume I am mentally challenged, and either turn away and talk to my aide, or run away altogether, or talk to me as if I am a baby. People are generally impatient and lazy. They just don't want to try and make an effort. It's a sign of the times. And it frustrates me to deal with it. It's also hurtful when people look away and wave their hands at me and say 'Write it!'. The undercurrent of that gesture is 'I don't want to deal with this' or 'I don't have time for this'". Frankly, able-bodied people -- unless they are professionally trained to deal with people with disabilities -- don't want to be bothered, or don't have time or patience. Or are scared, threatened, or freaked out. So I adjust to them. I have no choice. When I am out in a group of more than two [there are a few exceptions], I am simply an observer. The other people talk and I listen, and am rarely a part of the conversation. If we are out for a meal, they ask me what I want to order, and that's the last thing I "say", unless I wave my arms like a crazy woman to get noticed, and type on my iPad, or assistive communication device, or write on my Magna Doodle erasable board. My iPad "Verbally" app has a little bell I can ring when I want to "speak" which is funny, because when I ring it, everybody looks around all confused like "Do you hear a bell? Where's that coming from?"

Anyway, the speech pathologist has determined that I not only need -- but can also benefit from -- a new assistive communication device, so my next stop is the Assistive Device Coordinator who explores with me the appropriate device to order. Stay tuned........

So Many Issues; So Little Time

2011-08-11T17:50:00.000-04:00

Sometimes there is so much going on, I avoid a blog entry because I don't know what to talk about first.

First off, ALSA of Greater NY was wonderful enough to give us Walk to D'Feet fundraisers tickets to the Brooklyn Cyclones game against the Staten Island Yankees last Friday night. I was really excited about this for three reasons: 1) I love baseball games, and this will probably be the only one I will attend all summer. 2) The Brooklyn Cyclones, which is a minor league team, is the "Farm team" for the New York Mets. 3) most importantly, The MCU Park, where the Cyclones play, is in Coney Island an area I haven't visited in many years, and a place that brings me back in time. Both my mother and father grew up and met there. As a child, we used to go there to visit my paternal grandparents and have numerous outings on Coney Island beach with extended family -- aunts, uncles, and cousins, as well as grandparents. Coney Island is legendary, and the Cyclone, for which the team is named, is one of the most famous in the world.
As a child, we would go up on the roof of the Projects where I grew up, and watch the fireworks in the summer from Coney Island. And, ironically, our view from our kitchen window in the Projects was the best I have ever had from anywhere I have ever lived. We were able to see the iconic Parachute Jump and Cyclone Roller Coaster all the time. And, as an added bonus, on a clear day, we were able to see beyond that, to the Manhattan Skyline. It's ironic, because it's the poorest place I have ever lived, but as I am starting to write stories about my childhood, I am quickly realizing that the place everybody always worked so hard to get out of, was really full of rich and happy memories for me.

I had my quarterly appointments at the MDA/ALS clinic and at my Primary Care Physician. My blood pressure was still too high, so my PCP increased one of my medications and added still another. I started taking the new medication and then looked it up on the internet the next day and found that it is in the category called "calcium channel blockers". I have gone that route before and a calcium blocker in the past that I tried had a terrible side-effect-- edema [swelling], and so this new drug had the same effect. I quickly weaned myself off that monster. My foot once again had become a shapeless blob. Lesson in all this: doctors are not superhuman beings, and they have very short memories. There was my doctor prescribing an edema-inducing drug once again for me. Lesson number 2: read up on every medication your doctor gives you. Either read the accompanying paper, which may or may not come with the bottle of pills, or if it's not there, ask the pharmacist for it. Then, go on the internet. Remember that the paper that comes with the medicine is coming from the pharmaceutical company. Although the drug company has to tell you the contraindications and side effects, and what to avoid when taking the drugs, and drug interactions, etc, it may not give the whole picture. Read what other users have to say about their experiences with the drug. Also, try to use the same pharmacy for all your drugs, so they can see what drugs you are taking together. The doctor is often motivated to prescribe a drug by which pharmaceutical rep gives the doctor more attention. It could be as mundane as which drug rep caters the best lunch for the office. I'm not kidding about this. I was a hotel and airline rep once for many years. I know that my relationships with my travel agencies drove sales. Pharmaceutical reps work the same way. Read and question. You have that right as a patient. If your doctor thinks he is a deity, you need a new doctor.

So finally I asked my doctor why I am eating right [which lowered my cholesterol] and staying out of stress as much as possible, so why can't I control this blood pressure. Isn't it time to check out my arteries and valves? She agreed and referred me to a cardiologist [whom I researched of course and was comforted to find he is associated with North Shore/Long Island Jewish Hospital in Manhasset and New Hyde Park -- the main hospitals, and very good for cardiology]. I had a battery of tests and the good news is that I have a strong heart and no blockage. Also my HDL cholesterol [the good, protective one] is very high. So I'm happy all those sardines, tuna, salmon, herring, and other fish I am eating, not to mention the Omega-3 fish oil and flaxseed I am also taking in, are doing some good. The cardiologist was very pleased to hear about all the vegetables and fiber I am eating, and that I am not eating red meat or saturated fat. So again I asked why my blood pressure is so high - heredity and aging [thanks]. Unfortunately, we whose ancestors come from Asia and the Middle East are prone to high blood pressure, and aging and not being able to move around like I once did, make it hard to keep the weight down. But I refuse to give up.

Add to that the conundrum that it is not recommended for ALS patients to lose weight. Weight loss for an ALS patient means loss of muscle, which is not a good thing. Moreover, there is the thought that weight loss usually means disease progression, and many neurologists feel that deliberate weight loss can also speed up progression, and therefore death. Nevertheless I am making it my business to do sit-to-stand exercises [but not to exhaustion] and to keep eating the way I am, and my goal is to be able to cut down, or ideally cut out, my blood pressure medications.

As to my ALS clinic visit, a new neurology fellow convinced me that increased use of the bi-pap [which is non-invasive ventilation or NIV] during the day can extend the life of my diaphragm, and thus my own life. So I started an extra two hours in the morning and an extra hour or two in the evening. If I ever get my new wheelchair, which the wheelchair company is ordering again, this time with pictures of how I am sitting in the old one, the new wheelchair will have a tray for my portable vent. So I will be able to have the vent with the battery when I go out. I have been fighting this for a long time because I don't relish the idea of going out in public hooked to a vent. But my involvement with disability advocacy has introduced me to a couple of dynamic polio survivors who joyfully go out in public with their portable vents. They are happy to be alive, not concerned with whether they are "freaking" anyone out. I hate that my disability makes a lot of people uneasy, and that my loss of speech gives the impression that I am mentally defective and somehow not able to understand what others are saying, but I have to live with peoples' ignorance. Disabled people have come out of the shadows since the American With Disabilities Act in the last two decades, but not far enough. As Attorney T K Small [a person with a disability himself, specializing in disabled rights cases] says, in a recent column in "Able", a magazine for PWD's, we as disabled people need to avail ourselves of the rights and accessibility that advocates fought for, for decades. We need to leave our houses, go out, use public transportation, and visit accessible venues. Only by being in public can able-bodied people see us, get to know us, and see that we can function well. And, this will alleviate the fear of becoming disabled themselves, if they see us as positive role models. Eventually we will hear less silly comments like "I give you credit" [for what? living?], "I could never do what you're doing [you would if you had to. what would you do instead? lie in bed?], or my pet peeve -- talking to people with you, about you, in the third person ....eg. "How is she ?" [duh, why not ask ME? I know how I am].

Peace to all!!

What Do I Do To Fill My Time?

2011-06-18T16:02:00.000-04:00

First of all, I would be honored if everyone could check out my new publishing platform, called “Yahoo Contributors Network” and read the first entry I have published on there called “Ode to a Woman Un-Liberated”. It's a tribute to my maternal grandmother, Fanny Triebwasser Vogel, whom I never met, because she died about seven years before I was born. The loss affected my mom deeply, and from everything I heard about her, I wish I had known her. She was only 50 when she died of breast cancer in 1948, in the days before mammograms and chemotherapy.

Time flies so fast that I’m baffled when so-called well-meaning people ask “How do you fill your days?”, or “What do you do with your time?”. Even as a child in non-techno times, when children’s television on weekends ended in late morning, I can’t recall too many times when I complained about boredom. Yes, when the cartoons ended on a Saturday morning, I would turn to my mom -- especially in bad weather when I couldn’t go outside -- and say “M-a-a-a, I got nuthin’ to do today”. Since the only suggestion she could offer was “Why don’t you bang your head against the wall a hundred times?”, I just stopped trying to get her to commiserate with me. You see, in the 50s and 60s, moms cleaned the house every day. I don’t know why they did this, especially in a 4-room apartment, but they did.

When I grew up in the “Projects” until I was twelve, I could always knock on the doors of the many children in my building and ask someone to come play. Often we played in the hallway to get out of the way of our moms, who were cleaning house. If the weather was clement [is that the opposite of “inclement”?], we were outside. Even when it snowed, we were outside building snowmen, having snowball fights,or otherwise playing in the snow. When we needed to warm up, we went inside the building for a while, but never in our apartments unless we had to use the bathroom. And, even then, we’d better be just seconds away from peeing or soiling ourselves, because our moms didn’t want us upsetting the routine by sitting on the toilet too long. I don’t know if any apartments in the projects had two bathrooms -- maybe the larger apartments in the “double buildings”, but at 3677 Nostrand Avenue, every family had one bathroom. And if you were unlucky enough to use the toilet after your mom cleaned the bathroom, she got angry with the timing. “NOW you have to go to the bathroom?! I JUST cleaned the toilet!”. I never understood this, because eventually the toilet had to be used, but after I went, she cleaned the toilet again”

Anyway, I always had the set of World Book Encyclopedias, and I deided it would probably take me forever to get through all the volumes from A-Z, so when the TV ended for me, and the weather was not conducive to going out, and I couldn’t find a friend available, there was always the World Book. I started with “A” and I don’t remember what letter I got through, but I never got to “Z”. My sister and I still joke about watching “Wide World of Sports” and there was always some old movie on. My mother would look up from her cleaning, as we checked the TV Guide [there were only channels 2.4.5.7.9.11. and the educational public-TV channel13], and when we said the name of some old movie, often she would say “Ooh girls, that’s a good one. Watch it!!”

So these days I take those memories and apply it to modern times. I am on the computer most of the day, going through activist types of emails, and signing loads of petitions. Sometimes I am writing articles or poems, reading books in my Kindle, or watching something on the TV. I now have over 1000 channels, and more TV programs to watch on the computer, not to mention games to play. What do I read? Right now I read a lot about nutrition, and I have also downloaded a lot of books for free on Amazon. I have a lot of books on various eras in history and I want to brush up and review the science I so hated in middle school and high school. So I have a bunch of reviews in biology, chemistry, and even neurology. I have changed my eating habits. I was out with two friends last Saturday and one of the women put her French fries in front of me. I didn’t take one, so the other two women shared them. I had a sandwich, and enough bread to satisfy myself. Inside the read were tomatoes, fresh mozzarella [I rarely take in any dairy anymore], and basil. My diet consists of mostly raw foods that come out of the ground. I don’t eat meat, I do eat fish like sardines, salmon, and herring to get the calcium and omega-3, and I pick my vegetables according to what nutrients I want to have. Tomatoes for lycopene, mushrooms for vitamin D [I just learned about this], sunflower seeds for vitamin E, turmeric and chia. I add other things from time to time like avocado, berries, broccoli, etc.

So thanks for asking, everyone. I have no problem filling my time. Most nights, I’m lucky I have an aide to remind me that it’s time for bed. Otherwise, I would probably never get in bed. Knowing you have limited time on this earth reminds me of all the time I wasted, especially with stupid relationships with men and women-- friends and other more intimate pursuits -- that I tried to keep together when they weren’t working anymore. I have wasted so much time in activities that would lead nowhere, and especially in jobs that meant nothing besides a paycheck. I wish I would have worked harder in science class. I wish I wouldn’t have wasted so much time. I want to learn anything I can. I have downloaded on my Kindle a lot of free books on subjects I have long forgotten -- everything from world histories to reviews of biology, chemistry, neurology, and nutrition. If I lived to be 100, I would not have time to get through all this.

Budget Cuts Will Hurt ALS Patients

2011-04-07T22:00:00.001-04:00

So I feel like I can breathe again. My friend Maddy finally poured a bucket of freezing water in my face, as she always does when a lot of time lapses between blog posts and yells at me [in capital letters, of course] "GET YOUR FINGERS ON THOSE KEYS!". I just lose track of time. So much to do in a day, and I get fatigued, so I have to take breaks and naps.

I was as committed as ever, to helping out the widespread effort to get in our legislators' faces to oppose NY State's Governor Cuomo's "Medicaid Re-Desgn Plan" and the part I was most concerned with, was the threat to the CD-PAP [Consumer-Directed Personal Assistant Program]. Briefly, the CD-PAP is a system whereby the client/patient ges to hire, fire, and schedule her own home care staff, and each week submit a time sheet to an agency [mine is called "Concepts of Independence"] which administers payment and benefits -- medical insurance,paid vacation, and sick-time as well as holidays for the aides.

As those of you know, who have followed from the beginning of my blog on Caring Bridge, I had nightmarish experiences when I got my aides from the largest home-care agency in the country, the one whose commercial tagline is "We bring the caring home". For those of you who don't know, or forgot, let me recap. I had aides who snored so loud, my apartment shook, and I was robbed of money, a brand-new digital camera [which has never been replaced since 2006], and other things. When I complained to the agency, I was told there was nothing they could do, because I didn't have proof. Then, I got four aides I really liked, who became my regulars. However, when one of my regulars became sick or went away, the agency refused to let one of my other regulars fill in. They insisted they had a team of aides who did fill-ins, and they would get "mad" if they sent one of my regular aides to fill in. Absolutely no concern for the patients' [my] well-being and comfort. So ever time one of my regulars took off, I had to deal with an aide who didn't know anything about my disease. One called her office within full earshot of me, yelling at her supervisor "Don't ever send me to this patient again! She's too much work!"

And the nurse they sent every week! Aside from telling me that I wasn't working hard enough at getting better [huh?] and "playing helpless", she began to tell me every week "I am having trouble finding a long-term care agency for you. No one wants to take your case because it's too difficult and you are lazy. You should be better by now". One day I asked her "How much do you know about my disease?", to which she responded "I know all I need to know". When the agency called me and said I was harassing the nurse and they would have to change my aides, I could take it no more.

My good friend Norma, who has ALS and was a nurse at St. Luke's Hospital for more than 30 years, happened to now the head nurse at this huge agency, wrote a scathing letter, and I received apologies from the aide supervisor and the nurse. But I had already filed my application for my case to go to the CD-PAP, which was finalized a couple of weeks later, to the shock of the agency.

We must preserve the CD-PAP! It is a freedom of choice that is so indispensable to people with disabilities, and especially for ALS patients. ALS is such a misunderstood disease, about which so much of the home care, nursing, and even medical establishment is so ignorant. It is so essential that ALS patients be able to fire, hire, and schedule their own aides. We need to train a team of aides about our needs and the idiosyncracies of our condition, and not have to deal with different and unfamiliar people all the time.

If your state doesn't have a CD-PAP, we must all fight for this important system. And now I am engaged in letter-eriting and emailing and social networking in another fight. On a national level, we must fight the effort to eliminate Medicare for people with disabilities and replace it with a voucher system, and to eliminate Medicaid altogether. If you are not already my friend on Twitter and/or Facebook, please connect with me. In the coming weeks, I will send updates to Facebook and Tweets to Twitter about NY's fight [which is not over yet] and the national situation [which is only just beginning]. If you are already on home care, you will be scrutinized. ALS patients have more hours of home care, because we need it. There are recipients who don't need the hours they have, and tons of abuses. They should leave ALS patients alone. I am told they will be very closely looking at issues like caregivers living with patients, and patients living with family members that Medicaid deems should be caregiving. We all know how unfair this is. It is extremely intrusive and taxing for some family members to be taking care of ALS patients while trying to live their own lives.

I can guarantee that a voucher system will not work, and will force ALS patients to sacrifice essential things like equipment and specialist's visits. We must fight along with ALSA and MDA. If you are in NYC, get on the Yahoo group DNNYC [Disabled Network of NYC] and, if you can, go to monthly meetings of DIA [Disabled in Action], because we need a bigger presence in the larger disability advocacy movement, which encompasses everything from mental disabilities and ADD to blindness and deafness, as well as other muscle diseases.

New Developments/Eating Healthy

2011-02-23T11:10:00.001-05:00

Firstly, Some good friends from my ALS group lost their relatives to ALS recently. S. and D. lost their brother who lived in New England. Their brother was a creative person at a multi-national toy company, and had a six-year-old son, and three-year-old twin boys, who were born just after he was diagnosed. This family was so devoted to this young father that, even though the siblings live in New York City and their parents in Duchess County, at least one member of the family went to New England every weekend to see him and his family.

Then maybe two weeks after I heard about this passing, I received the sad news that another friend from my Beth Israel ALS group lost her mom to this disease. M. was so dedicated to her mom that she went from Manhattan to Brooklyn at least one day every weekend. These two families were held together by their Catholic faith and familial cohesion. It's true that ALS is a family disease, because it affects the whole family.

I am still eating a healthy diet. For breakfast, I have stopped the Carnation Instant Breakfast [now I think they call it "Breakfast Essentials"], because it is chock full of sugar, despite providing many vitamins and minerals. I now eat a whole-grain type of cold cereal with soy milk. By the way, people who are vegetarians, or anyone who does not eat meat every day, need another source of vitamin B12. I found out that soy milk is fortified with B12, whereas almond milk is not. I stay away from dairy because of lactose intolerance, and what I have learned about the dairy industry and its cruelty to cows, which I won't go into here. I don't want to shove animal rights down anybody's throat. You can also get B12 from yogurt, cheese, and other fermented products, like sauerkraut or kim-chi. I don't drink milk, so fortified soy milk is essential for me. And certain cereals and breads are fortified with B12, as are several products made as meat substitutes for vegetarians. And, if you are a carnivore, you are getting enough B12.

Which brings me to the next challenge -- Vitamin D3. Especially for post-menopausal women, but for all human beings, we need Vitamin D3 for strong bones and other organs. Lately, most of us are not getting vitamin D from the most reliable source, which is the sun. If you don't live in Sydney, Australia, which has 340 days a year of sunshine, you are probably deficient in vitamin D, unless you
get 20-30 minutes of sun every day and don't use sunscreen. Yes, the reason we are not getting enough D from the sun is that we have been so scared of skin cancer -- as we should be -- and use so much sunscreen or sunblock, that we don't get the sun on our skin. So we need to take it in supplements or get it in fortified foods. The importance of Vitamin D is that it works with calcium to keep our bones strong. It's not enough to get the calcium alone. And for women, it is so important to prevent osteoporosis. For me this is so important, because even in the summer, I don't get out as much as I used to, for various reasons.

I have read about the supplement Spirulina [blue-green algae] showing promise for ALS mice, so I bought a bottle, but lately I have been also reading that these same scientists who did this research on the mice, don't know if Spirulina can be harmful to humans. So, I'm taking it very cautiously.

Since most ALS patients die from complications like infections and pneumonia, I look for anything which can slow down progression. In the 70 years since Lou Gehrig died, there is only one drug [Rilutek/Riluzole] which is supposed to slow progression and only add about three months to our lives. Whenever I hear of an ALS patient surviving a hospital stay, due to pneumonia or other infection, he/she always comes home with worsened ALS -- that is, IF he comes home. I look at it this way -- good health and especially a strong immune system, won't cure ALS, but it will help me keep infection away, or help me fight anything I get. It's the only defense we have.

Writing a book is harder than I thought, especially in my situation: a studio apartment with an aide, and the television going most of the time. Luckily, my daytime aide goes shopping for groceries in the morning, and I have some quiet time. And often in the afternoon, she goes in the kitchen and reads for about an hour, so I sneak in a little writing time then. But it's so hard for me to put together the chapters. I never really took a course in writing a book, so I have no knowledge of book-assembling technique. I'm doing the best I can, because I don't have money to take online classes right now.

Will eating healthy and vegetarian cure my ALS? Of course not. But I need to drop weight and get my blood pressure down. Losing weight is so difficult when I can't really burn calories. I keep hearing at my support groups that ALS patients need to take in more calories, because we burn calories faster. Whoever came up with that has never met me! Why isn't that true for me? In the first couple of years of this disease, dieticians and doctors told me "Eat whatever you want, and eat a lot", so I did! And now I'm overweight and suffering from high blood pressure for the first time in my life. Oh well, I keep trying.

PEG --Get It Early? and Other Info About the Notorious "Feeding Tube"

2011-01-16T19:51:00.000-05:00

So they tell you to be ahead of the disease. To get everything early, to be prepared. In some cases, the suggestion comes too late, because of faster progression than expected. For some, the advice comes too soon and freaks out the patient. I recall a lady at our support group who was told by the facilitator, make sure you order your equipment before you need it." The lady, who had been recently diagnosed, and had walked into the room using only a cane, looked surprised, and asked "what equipment do you mean?". The facilitator answered "motorized wheelchair, bedside commode, Hoyer® lift -- you know.....". Apparently, the newly-diagnosed patient didn't know, and this information came as a shock, for which she probably wasn't ready. And it's so difficult while you're walking, to picture yourself in a wheelchair, and even more difficult to think about a feeding tube while still eating solid food, and swallowing with no problem. And since it's optional, many patients agonize over whether to get a feeding tube at all. Unless you know exactly what a PEG tube looks like, you have scary visions of people flat on their backs with any number of tubes coming out of their bodies.

The truth is that a PEG tube is covered up with clothing and, if you can adjust to large tops, especially those peasant-ish tops which are ample in the front [for women] or nice roomy polo tops [for men or women], nobody will ever know you are wearing one. And -- here is the one that most people are misinformed about -- if you are able to eat by mouth, you don't have to stop when the feeding tube is put in.

So I had my first feeding tube put in September, 2005 because I kept hearing "Get it while your breathing is still okay, because the lower your FVC [forced vital capacity] is, the more risky it is to go under anesthesia. So on the advice of my ALS neurologist and the Speech and Swallowing Pathologist, and the Dietician at the ALS clinic, who determined that I was progressing very quickly, and so I needed to get my feeding tube early to be ahead of a time when I would not be able to swallow at all.

By some miracle, about three years after my diagnosis [early 2007], I reached a sort of plateau [for which I feel very fortunate]. Well, by mid-2009, my four-year-old PEG started to get soft and weak, and leaked a lot. I had it replaced in September of that year. But that replacement was never right. The tube site continued to leak and the stomach acid that came out, burned the skin surrounding the site, and it was a big painful mess.

Then the tube fell out in March of 2010. I went to the local emergency room. The local hospital here isn't my favorite, but it's not terrible. I just didn't have a great time there when I fell and broke my wrist in March, 2004. I stayed overnight at this hospital when I had orthopedic surgery on the broken wrist, and thought the nursing care was -- not very caring. And my trip to the emergency room a week before, when I first shattered the wrist, was nothing short of disastrous.

But the local hospital, which had been absorbed by a large system of hospitals, did a lot in five years to improve its ER, and when I went in March of last year, the waiting time was much shorter and I was in and out within three hours, as opposed to the 6+ hours I was there when I broke my wrist 6 years before. I knew something was very wrong and went to different GI doc than the one who had put in the new tube 6 months before. As it began to get worse with stomach acid really eating away my skin, we decided it had to be done again, but this time in a whole different place.

In September, the tube fell out again. Again, a trip to the local ER, where they replaced it, and every time it was replaced. they insisted on taking an x-ray to see if it was placed well. So, when I was getting dressed three weeks after that [third time in 6 months], I called the new GI doc and we both decided to just let the hole close up since we weren't going to use that hole anymore anyway. Besides, I was not crazy about more radiation on my belly. Stomach cancer I really didn't need, and I was araid any more radiation would give me another dreaded disease.

The first week of December, I went under anesthesia again to have a whole new hole made and a new PEG tube put in. So that's where I am right now, with a new PEG in a new hole, slightly higher and to the left of the old hole. But that five-year-old hole is not closing up as fast as they said it would. So it still leaks out stomach acid, especially when I eat spicy foods -- which I love. And it makes a very socially-unacceptable noise. it sounds like my stomach is laying a big long fart!. Or it sounds as if my stomach is a big balloon that is deflating. It's extremely annoying, and it hurts. Christmas and a blizzard, and now two more snowfalls have gotten in the way of my followup appointment with the GI doc.

Did I get the tube too early? Maybe in retrospect I did. But it's so hard to know. At the time I got the original tube put in, I was progressing quickly and we were afraid my breathing would deteriorate and cause a problem. And the last thing anyone wants to do, is to have surgery on an emergency basis, even a minor procedure like PEG tube placement [a 20-30 minute surgery]. So who's to know? Because we have no way of knowing the progression of the disease, we have no way of knowing how early is too early. But my best advice is still to get it early and don't wait until you end up with aspiration pneumonia, when it becomes a life-saving measure. And if you get it before you need it, you can still eat by mouth and practice putting fluids in the tube, especially if you need to hydrate. Then it won't seem so foreign and scary when you have to use it as your sole method of getting nutrition.

Where Were You on December 8, 1980?

2010-12-09T16:50:00.000-05:00

I hope everyone doesn't mind that I seem to be veering off-topic this time. Actually I'm not, because living with ALS is not about talking all the time about my woes and challenges with everyday living, but also reflecting on life and passages and having the time to reflect on the events that have an impact on our lives. My life is about so much more than a disease that I have had to learn to live with. Having ALS or any chronic illness is about reflection and also relating the important concept that there is a PERSON sitting in that wheelchair, and often a person who lived a regular, healthy and full life before getting sick or hurt.

I realize that I haven't been updating the blog as often as I would like because I seemed to have a writer's block as concerned ALS. I was just bored with writing about a disease all the time. Thankfully, I am stable and there were not a lot of changes. I think I will have the will to update more frequently if I make it about me and not about the disease all the time.

Is it possible? Could 30 years have passed since Mark David Chapman senselessly shot John Lennon to death? Could it be that the last time we saw him alive was when he was just 40? What would he be like at 70 years old today? I think he would be a supporter of President Obama and certainly would be very disturbed about the situation in the Middle East, and the fact that we are at war. I am sure that he and Yoko, AND SEAN, would be out there demonstrating, making speeches, and even speaking on behalf of candidates whose positions they believed in. I'm so sorry he isn't with us anymore. I still miss him, and I don't think he would have been any more slowed down at 70.

Yesterday at the Dakota, where Yoko still lives, and at Strawberry Fields in Central Park for John's
birthday on October 9 of this year [John's 70th birthday] fans of all ages gathered. What was most striking to baby boomers such as myself, were the kids who were there who were not even born when John was murdered. I cannot even wrap my head around that! As a kid, I don't think there was any dead musician I would have worshiped like that. It's testimony to the influence John and the Beatles still have on the world.

I thought a lot yesterday about the concept of legacy. John Lennon left such a legacy to be honored 30 years after his death. It's his way of living long after his death. We can all leave a legacy. Something so simple as my sister Haley making my Mom's special potatoes every Thanksgiving [she's been dead 15 years] is a legacy. Even my two nieces who were born after my mom died, refer to these potatoes as "Grandma's potatoes".

With the wonders of the internet, it's so much easier to leave a legacy than it used to be. I wish my mom had been able to have a Facebook page. She would have loved that. And, as a movie fan, she would have lived on imdb.com. And John? He would have had a field day with Facebook and Twitter. Just think of how accessible he would have been to everyone through the Web.

We should all work on leaving a legacy. What would be your legacy? Do you remember where you were and what you were doing when you heard the news? I was in my kitchen in Los Angeles, where I moved a year before, cooking my dinner when I heard the news on the radio that John had been shot and was taken to St. Luke's Hospital. I prayed for him, and a short time later, I heard he died. I remember not being able to process the information, and wondering why someone would kill this man who had stayed home to be a father that he was never able to be for his first son, to his son Sean. And most of all, he wanted to be the father he never had, since his own father had abandoned him. He talked about peace, and I believed peace was all he wanted in the world.


The memorial to John Lennon at Strawberry Fields in Central Park, New York City

John loved NewYork!! I would have loved to hear his take on our city and what's happened since his death -- 9/11, schools, gentrification, Bloomberg. Because of his murder, his widow Yoko Ono and his son Sean have been reclusive. But if not for the murder, all three of them would be out there in the city, even in Washington. Just as Mom lives through her potatoes [and other things, of course], John lives today through his legacy of peace and love.

I Lost a Dear Aunt, Botox, Machines [again], Book [still]

2010-10-17T19:01:00.000-04:00

First, let me say that I lost a beloved family member this week. My aunt, Ruth Pasternack, was 89 and had numerous health problems in the last few years, but about 40 years ago, she survived a cerebral hemorrhage, so I always thought of her as indestructible. She was my father's sister and very close to him. Today, my dad said he is very sad because she was the only person he could confide in. He will miss his oldest sister [he has four, and he is not as close to the other three].

Machines....oy, we can't live with them, and we can't live without them. Kind of like men.....or women, depending on your desires. Except I can live without a man; I can't live without my machines. My lifeline -- my internet -- totally went away two weeks ago. The closest appointment they had was a whole week later. Don't tell Time Warner, but I found a way to get on some of my neighbors' networks, for a few minutes at a time, anyway. Finally a week later, the cable guy came, made a "minor adjustment" to my router, and I'm fine. I don't think anyone particularly missed me and that was a bit disturbing. But, I'm back in business. My cable remote had also decided to die last week, and Time Warner promised to send one in the mail. But we asked the cable guy when he came, if there was anything he could do, and luckily he was able to bring me a brand-new replacement from his truck. Now I have issues with my bi-pap ventilator and I have to deal with phone calls to the respiratory company tomorrow. Thank goodness for relay calling, but it does take a long time.

I had my first Botox injections in my legs and about now is when the effects are supposed to be peaking. It seems to be going well because the aides don't have to stretch my feet as much as before, to get them in the braces. And, for the first time in years, my feet look like feet again, instead of big shapeless lumps. I might even sometimes try to wear regular shoes. The problem is that I am still not seated properly in this wheelchair and I can't put my feet on the footrests without turning them on their sides, and my knees are splayed out. The bad news is that the whole process for the new wheelchair has been halted due to insurance issues.

As for my book, I am furiously writing and rewriting, paying close attention to tone and attitude. I want to keep it as light as possible. And it seems that every day I am changing my focus and my title and chapter titles. I have two other books going on in my head which are more fictional, so I want to get this first book done. My aides are giving me more privacy these days. I am finding myself in a sort of de facto solitude -- not self-imposed, just that people who used to visit are not coming anymore, and those who still visit are coming a lot less -- and it's serving me with more time to write and do things that I really need peace and quiet to do. It's not what I would have liked, and it made for a lonely summer, but I've used it to my advantage. I've taken to being grateful that I am still here, and still able to type.

MDA Jerry Lewis Telethon and Other News

2010-09-22T21:09:00.000-04:00

Oops, I did it again! I let too much time go between updates. Once again, too many things happening at once. I got my wheelchair back on a Friday, and had the technician come the following Monday to adjust the footrest and headrest, which were out of whack. And, then, luckily, the next day-- Tuesday -- the loan closet was able to pick up the loaner and I was able to make room in the apartment again. Sounds perfect, right? The day after -- Wednesday -- the wheelchair decides to stop working. The wheelchair company was so upset by this and sent the technician out yet again. It was the old problem of the wheel slipping from "Drive" into "Push" but this time, we couldn't get it to go again. The tech said we might have to do it more than once and then give the wheelchair a little shake. It worked and it has worked ever since -- thank goodness!! Oh, and the bed is repaired. It needed a new motor too. I don't know what it is with me and motors, but I wanted to call in an exorcist. I really felt like I would lose my sanity -- the little that I have left, that is.

Now, to the Muscular Dystrophy Association [MDA] and the Annual Jerry Lewis Labor Day Telethon. I went to the studio and was told I would receive the Personal Achievement Award and an "interview". Now I bet you're asking "How does a person who doesn't speak, do an interview?" Easy. You get the questions in advance, formulate the answers on the Speaking Device, save them as files named so that you know which file answers which question, and on the day of the interview, hopefully you push the right answer to the right question. I was paranoid about this. There were four questions and so I had four files saved and when I got the question, I would open the file and the machine would speak the response. I practiced several times to make sure the answers were still there. When I went in front of the camera, it was even easier, because the Telethon was running behind, so we only had time for two questions and answers. Everybody told me I looked beautiful [liars!] and I did well [not as much of a lie].

It was more thrilling than I expected, because I saw up close some of the performers who were "legends of rock and roll". Remember that scene from the movie "Rainman", when Dustin Hoffman repeated a promo line from a radio station "WXXX, the legends of rock and roll...." ad nauseum? Well I got to see Ronnie Spector, Connie Francis, Tommy James [without the Shondelles] and Gene Cornish of the Young Rascals up close. And, of course Tony Orlando, who made me want to "tie a yellow ribbon round the old oak tree" and "knock three times". He looked great, and his songs remind me of college, because they were on the radio during my college days, and Tony Orlando and Dawn had a summer variety show on TV [remember variety shows?] And if you don't recognize these names, then you are under 50. Okay, so it wasn't Justin Bieber or Beyonce.

Now a word about the inspiration I felt. A lot of disrespect has been paid the Telethon recently, and especially Jerry Lewis. Jerry is in his 80s and all his old contemporaries are already gone. Someday, he will be gone too. I read a very snarky article by some idiot in the Washington Post, saying that Jerry is too old, and the Telethon should go the way of the Betamax or word processor. WHAT??? They raised about $58 million this year in the crappiest economy we have had in decades!! And as if the article weren't bad enough, the comments at the end were totally shocking. Comments like "with all the money raised, how come they have no cure yet?" Can you say "Almost 50 diseases"? and wait!! Does cancer have a cure? How many billions have we raised for cancer? And yet, that money has made a world of difference in research for better treatments, and methods of early detection, which leads to prevention and stopping cancer from spreading.

So it is with the MDA. Research has come up with amazingly effective treatments for many of the diseases, and many ways of assuring that people with ALS and the other neuromuscular diseases live longer and more productive lives. That wheelchair and speaking device I have? I wouldn't have them if it weren't for MDA, which helped with the 20% copay that Medicare doesn't cover. My wheelchair cost $25,000 and my speaking device was about $7,000+. Do the math and figure out 20%. How many people have that kind of money, especially those of us who have already used our life-savings for uncovered or undercovered medical costs? And how about the interdisciplinary clinic at Cornell/Hospital for Special Surgery I attend every three months and the support group many of us attend monthly. Those have to be subsidized by money from MDA, which also runs summer camps for children with neuromuscular diseases, and loan closets which lend equipment to patients whose own are in repair.

I agree that someone should probably be standing by to take the helm, just as Ryan Seacrest is doing for Dick Clark's New Years Eve celebration in Times Square. But to say that the MDA Telethon should end because Jerry Lewis is getting old? And to say "with all that money, where's the cure?"? is just pure ignorance and stupidness, as one of my aides calls it. If someone doesn't want to give, it's not like tax dollars. Don't give. And just because you don't like Jerry Lewis and question his motivations, who cares? He is an icon and the Telethon is an icon and a big fundraiser that does a lot of good. If you could have seen the little kids I saw in the green room before the Telethon, and how they made me feel guilty for complaining that I got a disabling disease at 48 years old!! They had great attitudes and their families were just as upbeat. It was the most inspiring event I had the privilege of attending in a long, long time!!

Update August 30, 2010-- Bye-Bye Summer

2010-08-31T20:51:00.000-04:00

Well summer is at an end. I am grateful for the three outings I had this summer, which was really a hot one. At the beginning of the summer, Louise invited me to the annual barbecue at her church, St. Luke's, in Forest Hills, on a beautiful summer evening. In July, Judy came out and we took Access-a-Ride to the Rockaway boardwalk. It was pretty empty on a Tuesday, and Rockaway is still very depressed, with a lot of boarded-up businesses right next to the beach on Beach 116th Street. It reminded me of my home town -- Long Beach -- before it got the HUD grant which facilitated its revival. There was an SRO right off the beach and therefore some shady characters on the boardwalk. Originally, we were going to go to Brighton and have lunch in one of the Russian restaurants on that boardwalk, but I thought it would be too far, and there is a city bus from Rockaway to my neighborhood in case we had any trouble with Access-a-Ride. But Access-a-Ride was impeccably on time, and I'd forgotten what a long ride it was from my house to Rockaway, along Cross Bay Blvd and through a long stretch of nature preserve. I wish I had gone with Judy's original suggestion of Brighton, which would have taken the same amount of time over parkway. Oh well. But it was hot and the sun was out, and I knew it would be my only opportunity to see the ocean this year, so I was grateful to be there. And Judy is great for having gone with me.

My third and last outing this summer was in mid-August. Jenny Vidoni, who works at MDA in Manhattan and coordinates the MDA/ALS efforts in NYC, came out to visit. I know Jenny from our support group at All Souls Church, which she co-facilitates. I was just so grateful that she came out because Manhattanites hate to come to the outer boroughs. We walked to Flushing Meadows Park, and visited the Zoo. We had a great day. Jenny is used to dealing with all kinds of disabilities, so it was fun, and extremely comfortable.

I was invited to be part of the Consumer Board of Concepts of Independence, Inc. Concepts is the company that runs my Consumer Directed Personal Assistant Program [CD-PAP] This is something that disabilities advocates fought for, along with the Americans with Disabilities Act. The CD-PAP allows me to remain in my home and select my own aides [personal assistants], rather than depend on an agency. Those of you readers who have been following me since the Caring Bridge page I had, know what a triumph it was when I got onto the Concepts program. The agency I worked with before, through which I met 3 of the aides I have now, was less than accommodating, sending all kinds of aides to me who were less than satisfactory. I was robbed of a brand-new digital camera, and plenty of cash. Some of them were so scary, I was afraid to go to sleep at night. Eventually, I got a team of aides whom I could trust. But when any of them called sick, the agency sent strange aides instead of ones I already knew. It's very difficult to keep training strangers about what to do, especially since I can't speak. And some of them were intimidated, frightened, or just plain lazy. I had an assortment of ladies who I am sure were nice people, but they resented being sent to such a "difficult case" and took their perceived misfortune out on me, or just fell asleep, snoring, in my big comfortable chair. My complaints fell on deaf ears, with the agency supervisor often telling me "I have a hard time finding aides who will go to you at all". That didn't make me feel very good, and to top it off, I had a nurse who would come once a week and tell me "I have a hard time finding an agency who will take your case on a long-term basis, because your case is so difficult", which made me feel even worse. The day I switched to Concepts was a happy day.

Long-Overdue Update

2010-08-06T20:28:00.000-04:00

Once again, too much time between updates. There have been too many things hanging, and too many things changing minute by minute. I didn't want to write about something, only to have it change between the time I typed it and the time I pushed the "publish" button, only to have it change still again after publishing and before sharing the link on Facebook and Twitter.

So, I was having trouble with my PEG [feeding] tube. Since it was replaced in September 2009, at Beth Israel Hospital, it was never right. From the time it was originally placed in September, 2005 until then it hadn't given me a moment of trouble. The only reason I had it replaced 4 years later was that PEGs are usually changed every two years and this one was discolored, and the rubber had weakened. So it was replaced in September of 2009. But when it fell out in March of 2010, I went to my local ER and the tube was replaced by a resident [not GI] doctor. That was when the situation got worse -- the tube leaked stomach acid, which ate through my skin, making the area around the tube angry-looking and very painful. The doctor at Beth Israel insisted everything was okay, but I knew it wasn't. So during my next quarterly visit to the MDA/ALS clinic at NY Presbyterian/Weill-Cornell, I lifted up my shirt for my neurologist, and she was pretty horrified

So fast forward to July and Dr. Crawford at Cornell, GI doctor. He says I am best off replacing the tube in a whole new location. This would mean another endoscopic procedure and going under general anesthesia again. Of course, I freak out, and Dr. Crawford says he feels bad, but it might not be enough to do a simple tube replacement in the same site. Anesthesia is always a risk for anyone, but especially for a person with respiratory issues. When it was done in September, I wore my bi-Pap while I was under anesthesia and all went well, but this is 11 months later and I might not be so lucky this time. But I resign myself because it has to be done.

I came into Dr. Crawford's office this past Monday with my bi-Pap, fully expecting to have the endoscopy, and Dr. Crawford tells me that he has decided to do a simple PEG replacement to see if that works. So that's what he did in the same site. to tilt a bit in order to clearWe are keeping our fingers crossed that this does the trick. If it doesn't, I'm headed for another endoscopy and anesthesia.

My wheelchair is fixed -- for now. Every once in a while, the tilt stops working, but then it starts again unexpectedly. This is a pain when I need to nap, and when I travel in the street, because I need to tilt slightly in order to clear bumps and curbs. I spend as much as 16-18 hours in the wheelchair, so napping and relaxing are very important. So the technician came to my house last Friday and fixed the footrest, which wouldn't stay in the up position. Getting the footrest out of the way is important for transfers. So transfers have been hard on the aides and myself. Ideally in a transfer -- from bed to wheelchair, wheelchair to bed or commode, etc-- the aide and patient work together, with the patient helping as much as possible according to his/his remaining abilities. I have a new wheelchair finally in process, but it's anyone's guess how long it will take for that to happen.

The weather has not been good for someone with compromised breathing, so I have been inside much more than I like to be, and much more than any other summer so far. Judy has come over a couple of times, and we have had to postpone a few times because of the high humidity and poor air quality outside. I was invited to Louise's church's barbecue one evening, which was a very welcome and pleasant outing for me, but we were careful to get out of there when the mosquitoes came out after dark. Ironically, the best place for me is the allergen-free beach, but I don't think there will be an opportunity for me to get to any beach this year. This loss has been the hardest for me to accept.

Wheelchair Woes and Perspective, Eating Healthy,

2010-07-04T17:43:00.000-04:00

YES YOU'VE COME TO THE RIGHT PLACE! Same blog with a new design. I thought we needed a change. Feedback welcome of course. What do you think? I thought this would be easier on the eyes, but I am not quite used to it yet myself. Believe it or not, change is not easy for me.

I am shocked at the time lapse between my last update and now. It is mostly because of wheelchair problems. In mid-June, my wheelchair died. It just stopped driving. So for a few days, my aide put it in "push" [or "manual"] mode and pushed a 386-pound wheelchair with me in it [extra weight of my body undisclosed here] around the apartment until she threw out her shoulder. Then the ALSA loan closet dropped off the best thing they had available -- a wheelchair tailor-made for a 300-pound, 6-foot-tall quarterback, with the seat controls [tilt, recline, and footrest elevation] ON THE BACK OF THE CHAIR. This meant that, all the 30 or so times a day I needed to recline to relieve my aching back, I had to ask my aide to do it.

Well, the wheelchair company picked up my wheelchair for repair and the loan closet received a loaner returned to the loan closet with all the controls on the arm, but with a footrest that didn't work so well, and fanned out at the sides, making it a major obstacle to move around in certain parts of the apartment. And the worst part -- it had no headrest. So if I fell off to sleep, my head would flop off to one side, and I would wake up sore from my neck through to my shoulders.

Finally, after about two weeks [which is actually very fast for a wheelchair repair], I got my own wheelchair back, and I can once again sit at my computer straight and type with both hands. You see, wheelchairs aren't just chairs on wheels. The wheelchair is where a PWD spends all waking hours. They are custom-made for the patients measurements and abilities. Some have controls on the back, if the patient cannot use his hands, and must be operated by an attendant. Some even have controls operated by the patient's head. The seating is also custom-fitted. So a loaner is never quite right, although the lady who runs the loan closet at ALSA does her best to match up the loaner and the patient [she was on vacation when my wheelchair died, by the way]
So the only analogy I can give to someone who isn't familiar with wheelchairs is this: what if you had to send your body to be fixed and, in the meantime, you had to borrow another body until yours came back. The loaner body would be as close as possible to your own, but it wouldn't be quite right and wouldn't work the way your body works.

I have a friend I recently reconnected with, and I am very sad for what has happened to her since we last met. She lost her job and never managed to find another decent job again. It's so hard out there in this economy. But I wonder if she is just refusing to do certain things, or if she is so mired in depression that she is "stuck". Either way, I understand, but I can't help thinking what my mom always drummed into me -- "if you have your health, you can always do something to make money". However, I think she was talking about physical health; loss of mental health is just as debilitating. I listen to this friend and I refrain from preaching, or even giving advice. I empathize. What I can't wrap my head around is mature adults saying they are having "the worst day of my life". When I hear why, I say to myself "that should only be the worst day of MY life." It's all in perspective, and I keep thinking how amazing it is that I have coped with some of the things that have happened. And, yet, I have so much to feel lucky about. There is always someone much worse off than I am.

The only defense I have right now with a disease that has no cure and no really effective treatment to stop progression -- is a strong immune system. Recent studies have shown that patients who retain their weight have a longer survival. Well, I have retained my weight, and added some. I am totally disgusted with the way I look. I am the heaviest I have ever been, and heavier than I thought I would ever be in my wildest dreams. If anyone had told me before ALS that one day I would reach this weight, my reaction would have been "shoot me now and get it over with" I was an avid exerciser and walked the city many miles during weekends and vacations. If I had let myself go, and needed to drop 10-20 pounds, I would put my mind to it, and be successful. Anyway, exercise and burning calories is next to impossible with ALS, so I have committed myself to healthy eating. I decided that I was putting a lot of empty calories in my body, and would replace those with healthy calories. I have given up eating red meat and poultry, so I am almost a vegetarian. I snack on healthy nuts like almonds, cashews, and walnuts, reasonable amounts of fruits, and yogurt [preferable plain with fresh fruit]. For meals, I eat a lot of salad and vegetables, quinoa [a whole grain with a lot of protein], a banana every day, a half-can of coconut milk [lots of nutrients and anti-viral and pro-biotic properties], yogurt [probiotic] and anti-oxidant-rich fruits like pomegranate, blueberries, and purple grapes, whole grains, fish [calcium, fish oil, and protein], green tea, and cruciferous vegetables [anti-cancer], and occasionally dark chocolate and red wine. I have cut down on sugar, refused sugary desserts except on my birthday, use agave nectar as a sweetener in my tea, and also cut down on salt and carbonated beverages.

Most of all -- the hardest --I try to stay out of stressful situations. This has meant forgiving people who have made empty promises that they never intended to fulfill, and the people in my life I assumed would be there for me because either 1) I have been there for them in the past 2) they are old friends or related to me. Forgiveness is for my benefit, and not for their benefit. I also avoid contact with people who aggravate me, abase me, or will never accept the way I am. I blog and twitter to raise awareness, but I'm done with trying to change certain peoples' minds. I am there to listen and share in joys and tragedies, but if the connection gets too aggravating or frustrating [and especially if it gets abusive or disrespectful toward me], I walk away faster than I would have in the past. I have to, for my own preservation.

Update 6/10/2010: Birthday Meals, Mercury Resurrection, Wheelchair Troubleshoot

2010-06-11T19:38:00.000-04:00

Monday June 7 was my 55th birthday. What is the worst thing about turning 55? When I do an online survey or otherwise fill out any form on the internet, there is usually a check-off category 45-54 and then one for 55-64 or -- even worse, and more often 55 or more. I hate this!! Not only do we "55 or more" oldies get disqualified for more surveys, but just the thought of being in a category with people over 75 and even over 100? My dad is 82 and he is a totally different generation, and there is a world of difference between baby-boomers [who can now be as old as 64] and World War II veterans and children of the Great Depression, is ludicrous [and I don't mean the rapper!]!! See? my last parenthetical statement can be understood marginally by someone my age [55], but anyone over 70 would say "huh?". And anyone over 80 would say "what's a 'rapper' -- someone who knocks on doors?" I rest my case.

So, on Saturday before my birthday, I went to lunch with my friends Judy and Louise to Thai Pot in Forest Hills. Then Judy gave me the second part of my birthday present: she accompanied me to Trader Joe so I could do some healthy food shopping. One of my best purchases was a box of red quinoa, which my aide Cheryl cooked up for me [it is cooked like rice or couscous] and it provides a complete protein. If you are a vegetarian, this is a great food, because in order to make a complete protein out of rice, you have to add beans, which are fattening and socially challenging [although the product Beano® is a life-saver].

On Sunday, the day before my birthday, my dad treated me and my aide, and the whole family -- my sister, brother-in-law, and my nephew and two nieces -- to dinner at the Outback Steakhouse in Queens Place/Target Mall. I have to say that this Outback is really beautiful and not crazy-busy like other Outbacks. This surprised me because the mall is loaded with people, but I think they tend to frequent the Red Lobster in the same mall.

I had fish, because I no longer eat red meat or poultry, and I was surprised how well a restaurant that is famous for ribs and steaks, did fish. And the salad is the dream of anyone with chewing and/or swallowing issues -- everything is finely chopped!! YAY!! When they brought out the chicken wing appetizers, I ate the celery dipped in blue cheese dressing -- I'm so good......haha!!

My Mercury communication device suddenly died on Friday when the screen went . I emailed the rep from Tobii [formerly ATI] and he said he would come by on Monday to check it out. In the meantime, I went through an entire weekend writing on my board at my two birthday meals, and struggling with bad speech and my own special sign language with my aides. Antoinette from ALSA graciously sent a loaner through UPS to arrive Monday morning.

Suddenly, after going to bed on Sunday night, I was awakened very early Monday morning -- about 3am, to the familiar tune of my Mercury shutting down, I figured it was a part of one of my weird dreams< and went back to sleep. In the morning, I plugged it in again, pushed the "on" button and it went on, as if the last three days had never happened. I emailed the company rep, but he never checked his email and came anyway. When I repeated the story about what happened, he said "if it happens again, just remove the battery, disconnect any cords, and push the 'on' button for at least 20 seconds." If I'd only known that when this first happened, my weekend would have been a whole lot easier. Oh well......

After a recent event with a wheelchair glitch, I decided I would put together a short "troubleshooting" guide for wheelchair users and caregivers and companions, who may encounter a stalled wheelchair. Of course, this only applies to motorized wheelchairs. Manual folding transfer chairs would not have this problem, of course.

1] Don't panic. Relax. Tell other people who may be around, and will be inconvenienced by the stalled wheelchair, that the situation is under control, and you will get moving in a few minutes or less. It is no different from a stalled car, especially with everyone around you blasting their car horns. But understand that wheelchairs and people with disabilities just make people more uncomfortable, helpless and, in some cases, reduce intelligent rational adults to hysterical panic. Once you calm everybody down, proceed.

2] Stop anyone from trying to push the wheelchair. They can make the situation worse by knocking loose a wire connection or inadvertently moving any of the sensitive controls. You would have to be a super-hero to be able to push a stalled motorized wheelchair, especially with a person sitting in it. My own weighs 382 pounds, and with my own weight [which I will not reveal], it weighs -- well -- more than 400 pounds.

3] Many wheelchairs will not move if in tilt, the seat-back is reclined, and/or the seat is elevated. Make sure the chair and the seat-back are in the upright position, and the seat is down. Then turn off and start again.

4] If that isn't the problem, it could be that the lever on one or both wheels might have been jarred from the "drive" position to the "manual" or "push" position. This may happen if someone tries to push the wheelchair. In the latter position, the wheelchair will not go. Try to get someone to check those levers and make sure they are in "drive". Turn off and turn back on and see if it goes.

5] The next thing to check are any cord connections. Again, these can be jarred if someone has tried to push the wheelchair from the back. Turn off the wheelchair and have someone check the connections and push any loose ones into place. Then turn on the wheelchair and see if it starts then.

6] If none of these work, you will have to put the wheelchair in "manual" or "push" mode and have someone push you out of the way, and probably push you onto the bus going home. As a last resort, check your battery display. Did you forget to charge the wheelchair and now the battery is dead? You will still have to get home. Although you don't need super-powers to push the wheelchair in manual, the "pusher" needs to have some strength because it is not easy.

Anyway, if anyone has any other trouble-shooting ideas, let me know.

MDA's "Anyone's Life Story", The NYC Walk to D'Feet, My VIP MTA Q60 Private Bus

2010-05-26T07:10:00.000-04:00

May is ALS Awareness Month, so every May they dedicate their website to one ALS patient each day from all of their regions. This year, I am their representative from the New York City region and May 26 is my day. Go to Anyone's Life Story for my profile.

So Fern's fighters raised about $2,000 [and still counting] for the NYC Walk to D'Feet ALS alon the Hudson River. It was a beautiful day -- as a matter of fact, the weather was perfect!! We took Access-a-Ride from home to the West Village, and figured it would be easier to just take the MTA NYC bus from the Hudson crosstown to 2nd Avenue and then the Q60 Queens Boulevard bus from East 60th Street and Second Avenue home to Rego Park [it goes down Queens Boulevard]. We figured this would be easier, but we never dreamed HOW MUCH easier it would be.

You see, when we reached East 60th Street and 2nd Avenue, where the bus route originates, we boarded an empty bus [me via the ramp of course] and to our utter surprise, the MTA dispatcher told the driver he was running late and needed to get "back on schedule" [you mean there is actually a schedule?]. He ordered the bus driver to put on his "out of service" and not pick up passengers until Woodhaven Boulevard, which is only two stops from my stop -- 63rd Dr. That meant that I and Louise and my aide Cheryl had a private bus for 99% of our journey. For those of you who don't take the public buses, this is a huge time saver, since stopping at every bus stop and picking up/dropping off passengers can take a lot of time. So, a few red lights [Queens Boulevard is pretty well synchronized with traffic lights if you stay at a steady speed], were the only stops we made. And, Queens Boulevard is a six-lane mini-highway with a main express road and a service road, so we got to ride the service road. In short a normally 45+-minute ride was about 20 minutes and we were home in a jiffy. So that was really good transportation karma. All in all, it turned out to be a very successful day. I'm happy to report that, at the starting line I only ate a half-bagel with a cream-cheese smear. At the end point, I only had a few mini-muffins [yeah, I know -- sugar], and a diet coke [yes I know, I know]

On Saturday, May 22, I did a half-day with Ride for Life, a wonderful organization based out of Stony Brook University of the State University of New York [which happens to be my alma mater] in Eastern Long Island. Every year patients ride their motorized wheelchairs, with friends and family members walking alongside, from Montauk to Manhattan. Some people did the whole route and others did parts of the route. Since I really don't have a way to get my wheelchair outside New York City, I do the NYC portion when I can. This year, I met the group at Washington Square Park [West 4th] and we went all the way to Columbia University [West 116th] --approximately 5 miles. Louise walked part of the way and rode part of the way in someone's van [recent knee surgery] and my aide Cheryl walked the whole way!! [yay to both of them!!]. We had refreshments at Columbia and lunch at Washington Square Park. The weather was perfect. Ride for Life is a fantastic grass-roots organization that was started by Chris Pendergast, a former teacher in Northport, Long Island [fellow alum from Stony Brook University]. Each year the Ride, and other smaller events, raises money for research, patient services, and grants for things like respite care and home modifications. And, another important accomplishment of Chris and Ride for Life is the establishment of an ALS clinic at Stony Brook University Hospital. Formerly, Long Island patients had to go to NYC [Columbia, Beth Israel, or Cornell] for their interdisciplinary team care. As parts of Long Island [Suffolk County] can be 70 miles from Manhattan, this was a major hardship. So the Stony Brook facility is a godsend!! Chris has been living with ALS for 17 years and, despite the hardships of living with this devastating disease, still runs Ride for Life year-round, with his wife Christine and a small [but dedicated] office staff and volunteers. Check out their website and see what one man has done despite a disabling illness, and with a team of volunteers and little overhead expense.

Former RHS teacher Jack Elwood passes away.

2010-05-06T18:20:00.001-04:00

Former RHS teacher Jack Elwood passes away.

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Home Care, Chuck Schumer Rocks, Two new passings, MDA Gives Me An Award

2010-05-04T22:56:00.002-04:00

First of all, Senator Chuck Schumer rocks. Read this letter he wrote to the disabled community of New York endorsing the Health Care Reform Bill and the Community First Choice Act, which helps chronically ill and disabled people stay at home and avoid institutionalization [i.e. nursing homes].

I humbly announce that I am the recipient of the NYC MDA's ALS Division's Personal Achievement Award for this year. I could very likely appear on the annual tri-state NY metropolitan TV broadcast of the MDA Labor Day Telethon.

May is ALS Awareness Month and for every day in May, MDA presents a picture of an ALS patient and his or her "story". I have been selected from the NYC area to represent my region. Its called "Anyone's Life Story" and you can see my story on May 26, on the MDA/ALS Division's website.

My condolences to the families of Maria Pizarro and Julie McCourt, two wonderful ladies who attended the Beth Israel ALS Association support groups with their families, and who lost their fights with ALS on the same day -- Sunday, May 2. I will miss them. This disease is so cruel!! They both had loyal spouses who were involved in their care, and a group of friends and family members who were there to support them. They had everything to live for.

Unfortunately, I probably will not be able to participate in the Ride For Life this year. They don't have enough volunteers to walk with the riders, and they will not be able to provide van transport to family members and friends who get tired. Just the segment from Washington Square Park to Columbia Presbyterian Hospital which is half of one day, is from W. 8th Street to W. 168th street. At 20 blocks = 1 mile, do the math -- 8 miles. The friend I had who went with me every year, had recent knee surgery and can't walk that far. Even if she could take a bus part of the way, they won't let me ride alone with no one at my side, which I could do but they won't allow it. My high school friend, who teaches in the Lawrence School District wants me to do the Lido Beach to Lawrence segment, which her school is doing. They are going to see if they can make special arrangements to transport me to the starting point and from the ending point. In that case, she or someone from her school will walk beside me. So we'll see. In the meantime, is anyone in the New York area free on May 25th to walk the 8 miles alongside me from Washington Square to Columbia Presbyterian? Just let me know.

Last call to join my team "Fern's Fighters" at the Walk to D'Feet ALS on May 15th along the Hudson River!! You can walk, donate, or both. Just go to the team webpage to sign up or donate on line. Also, they need volunteers at the Walk to direct traffic along the route, give out water, and to work at the start and end points. Please contact me if you would like to do this. And, remember, we plan to walk at the Long Island Walk to D'Feet ALS in Eisenhower Park on September 26.

And finally there is a really great site that explains the Consumer Directed [Community Care] Program and the history of how it came about. For anyone who wants to know how they can keep a sick family member or friend out of a nursing home or other institution, and not have to deal with the restrictions and other nightmares of a home care agency, it is a must-read!

fernsfightersnyc10 Tiny URL for fernsfightersnyc10 Tiny URL for Greater New York Walk To Defeat ALS(TM):

2010-04-15T18:39:00.001-04:00

Fern's Fighters
scroll down to the list of team members and use the link for "join team"

this is the link to sign up for the Walk to D'Feet ALS in NYC on Saturday, May 15th in Hudson River Park with my "Fern's Fighters" team. If Long Island is more convenient for you, we will be walking again on September 26, 2010 in Eisenhower Park.

The NYC walk is a one-way walk from the Village to the 50s, with celebration at the end-point. Unfortunately, there is no arranged transportation from end point to starting point. So, if you park your car at the starting point, you have to take public transportation back.

If you do the Long Island walk, it's a circular route, with a celebration back at the starting point, lots of food before the walk and hotdogs and lunch after the walk. Either walk is a lot of fun!! You can walk, donate, or both. And when you register, there is an area online to enter the names and addresses of your donors, who will then receive letters of acknowledgement from the ALS Association.

if you care to run a fundraiser before either walk, contact me and I will contact the ALS Association, who wants to assist with any fundraisers. If you are on Facebook [who isn't?], I suggest you become friends with ALS of GNY [Greater NY], and receive all the updates and tips from the Association.

Updates:Budget Cuts Affect Nassau Able-Ride and People With Disabilities in General

2010-04-13T21:55:00.000-04:00

Sadly, I received notification that due to budget cuts, Nassau Able-Ride will no longer offer door-to-door service. They are only required by law to provide service to people with disabilities along bus-routes, so that's what they are going to do. This means that there are whole towns in Long Island that will not have Able-Ride paratransit service. I'm happy to be living in New York City, where Access-a-Ride still offers door-to-door service. It enabled me to go with my friend Judy to the kickoff party for the NYC Walk to D'Feet ALS at Yankee Stadium, and to the baby-naming of my friends' babies in Bayside, right on the border of Nassau and Queens. But I would not have been able to go to my traditional New Years Eve party at my friend Nancy's house in Great Neck if not for the connection to Able-Ride. This is very sad news for people with disabilities in Nassau County who don'thave use of a wheelchair van. Budget cuts are hurting everyone.

Budget cuts could really hurt me in a big way too. I am getting a visit from a nurse who works with NYC home care [CASA] next weekend, and she is going to evaluate me for continuation of home care. Right now, I have two aides every day, on a "Split shift" of twelve hours each. I am not likely to lose that, but they are not giving that arrangement to new applicants. Rather they want to give everyone a "live-in" arrangement. In that plan, an aide lives in the whole day, usually for 3-4 days in a row. However, they are only paid for 14 hours. This means that the aide is around in case there is an emergency in the night, but they are "off-duty" for eight hours. They would rather work a 12-hour shift and go home, rather than have to hang out in a patient's house. I am sure that the aides I have now will refuse to do this. So, if I am forced into a "live-in" aide situation, I am looking at a whole new set of aides. That will not be fun, so I am going to have to convince this nurse that I need the two 12-hour shifts, without seeming so dependent that she will have to put me in a nursing facility. It's a slippery slope, because I can do most things for myself, except I can't get into the kitchen, so the aides have to get everything for me. So they would have to leave certain things within reach. And since I don't really have proper sleeping arrangements, I would have to get an inflatable mattress at best.

On other important subjects, Lon Cohen says I can publish a book through Lulu with no cash outlay. I was fitted for a new wheelchair, so I will get that in a few months. The new season of "The Tudors" has begun, and this season of "The Amazing Race" is coming to a conclusion. I am going in May to see the "spasticity guru" as he is called by the Cornell ALS/MDA. He is at the Hospital for Special Surgery. The pollen count is also killing me, but when I feel I have to take an antihistamine, I can count on falling asleep for a few hours. I love spring, but it is a double-edged sword for me. I am comfortable inside with the A/C going. I remember my beloved, now-retired, allergy doctor Sidney Rand telling me "Always take a vacation at the beach and never in the country. Take hikes by the ocean on your days off, and never in the woods." I do always feel best at the beach, far away from pollen and ragweed. I always imagined myself retiring to a beach house to do my collages and my writing. I will have to settle for an air-conditioned studio apartment in Queens. My biggest challenge is the TV soap operas in the background all day. I can't help this, because the aides have to be amused too.

Good News About Local Hospital North Shore/LIJ Forest Hills, Wheelchair, Braces, etc

2010-03-19T20:58:00.000-04:00

On Thursday, I had an emergency. My PEG feeding tube came out and my aide found herself holding it in her hand. I knew it wasn't a life-threatening occurrence, but she was rather freaked out. Since I had an empty stomach, no sickening liquid came pouring out, and I put the balloon back inside my belly and put surgical tape around it so it would stay in, and off we went to the Emergency Room of Forest Hills Hospital aka North Shore/Long Island Jewish Hospital. For twenty five years that I have been in Rego Park, this hospital has seen me throuh two sprained ankles, a slashed thumb and a broken toe pre-ALS, and a shattered wrist and subsequent surgery, as well as an injured foot post-ALS. And most recently [I believe about 2 years ago], a horrendous experience when the tip of my PE tube came off. At that time, it seemed nobody had ever seen a PEG tube before, and the attending doctor tried to pull it out, nearly killing me with pain. I ended up going to Beth Israel Hospital, where my ALS team was at the time, and getting a new tip put on in about 2 minutes by a nurse in the GI Department.

So, I really didn't want to go to that local hospital, and called the doctor who did my PEG replacement last September, who was less than helpful. He told me to "just go to any emergency room. I was not optimistic when I entered the ER, but they took me quickly and the attending doctor looked at my PE tube and said "Okay, we'll have to change this" and sent a nurse up to the GI department to get a tube. He seemed rather surprised that I didn't have an extra one, and told me I should call my doctor and get two extra tubes to carry with me next time. Anyway, the tube has a balloon on the end which, when inflated, holds in the tube. Occasionally, the balloon deflates and so the tube cannot stay in place anymore. In four years that I had the last tube, this never happened. But I was told it could happen and that it wasn't life-threatening and had to be fixed as soon as possible. Then, they x-rayed the site to make sure the tube was placed properly. Within three hours of arriving at the ER, we were on our way home.

I had been invited to attend a meeting of the consumer board of Concepts of Independence, the NYC agency that administers the CD-PAP [Consumer Directed Personal Assistant Program] through which my aides are paid. This is a wonderful program by which I hire my own home health aides and we are not bound through the rules of an agency. Early in my home care, I had terrible experiences with the Visiting Nurse Services, who would send different aides who didn't know me or my disease and I had some difficult days and nights. I also had a nurse who would come to visit and yell at me because I wasn't "getting better" and finally told me one day "we are having trouble finding aides to come to work with you, because they say the case is too hard". Anyway, I was excited about being invited to this meeting, but I will have to postpone until the next time they meet.

My wheelchair is fixed and it is wonderful. However, the MDA Cornell ALS Clinic wants to get me a whole new wheelchair, which usually is not approved before five years. But they feel that with the progression of my disease, this wheelchair no longer meets my needs. I'm not sure it ever completely did. I also got a new bi-pap/ventilator combination called a Trilogy. I went for my quarterly ALS clinic appointment a couple of weeks ago, and thanked Dr. Wu for speaking to my primary care doctor to get my blood pressure medication changed from Azor to Benicar HCT with a diuretic. Now my feet look like feet again. I can even wear regular shoes sometimes. The shoes for my new braces are a problem, however. The podiatrist ordered shoes but they are too small, and he says I have to get custom-made shoes. These are going to be very expensive, and not covered by insurance. So I have to make payments on my credit cards until I have about $350 of credit to use. I'm happy to say I can pay the bills with no problem, but I have so little left over that I am lucky to be able to buy groceries, let alone custom-made shoes. Forget theater or baseball games this summer; that won't be a remote possibility. I'll have very little pleasure or fun for a long while, but the shoes are a lot more important.

Low-calorie diet could be deadly for Lou Gehrig's patients: study - Weight Management - C-Health

2010-02-24T22:06:00.000-05:00

Low-calorie diet could be deadly for Lou Gehrig's patients: study - Weight Management - C-Health
OK so now what do I do? I'm damned if I do and I'm damned if I don't!! This article actually says I should follow a high-fat diet to save my motor neurons! It goes on to say that I should take in high calories to live longer! Go figure!!

Broken Machines Yield Difficult Times For a Person With ALS

2010-02-21T15:00:00.001-05:00

I am dependent on machines and devices, which never seem to be functioning all at the same time. I am very grateful to have these things, because without them, I would not be able to live in my home, and have what little independence I do have.

First, my wheelchair. There was a time when there existed only manual push chairs, and every day and every minute that I buzz around in my motorized wheelchair -- either inside or outside -- I marvel at the fact that once I am in my wheelchair in the morning, I don't have to ask someone to push me from the desk to the other side of the room. And I'm sure I would hardly be able to go outside, because I would have to convince someone to push me down the street. And, imagine life before the Americans with Disabilities Act was passed in 1990! An old-timer who has been disabled since the 1960s told me once "Even if we got out of the house, where would we go with a motorized wheelchair? There were no curb cuts, and almost no businesses were wheelchair accessible"

When I found out my wheelchair initially cost $25,000 I was shocked. In 2002, I bought a Hyundai Elantra for $12,000, so how could a wheelchair cost the same as two of my cars? Wheelchairs are custom-made for the user, and refitted periodically for body changes and disease progression. The modifications recently done on my wheelchair were carefully measured and customized for me. So, when I had to give up my wheelchair last week for new tires and to repair two important features that had broken since December when I got my wheelchair back from the modifications, I dreaded the process of getting a loaner. Antoinette from ALSA ordered me a loaner and then I was in the hands of the medical supply shop that runs ALSA's loan closet. So they brought wheelchair #1, which was beautiful, but the driver who brought it couldn't get the seat-tilt working. Seat-tilt is important for relieving pressure periodically several times throughout the 14-16 hours I am in the chair. Moreover, as I slip forward, or when I sit down again after toileting, seat-tilt allows me to use gravity to get my butt back in the cushion.

So later that day, at Antonette's urging, they brought wheelchair #2 -- a beautiful Lexus of wheelchairs. It has all the features, but it's not mine, and not made for me. So I can't go in the street any distance with this chair, because the footrest is all wrong and my feet kind of lay there on their sides. And the side-guides that keep my body straight in my own chair, are not in this chair. So my body leans to one side and I have to keep leaning to the other side in a conscious effort to correct it. All this is very uncomfortable, even though it is the best possible alternative. Picture if cars were custom-made for our bodies and we had to drive a loaner. So I am praying that I get my own wheelchair back again this week!!

ALS TDI (ALS Therapy Development Institute) :: Podcasts, Wheelchair Woes [yes, again].

2010-02-04T14:21:00.001-05:00

ALS TDI (ALS Therapy Development Institute) :: Podcast

I love ALS TDI !!I think if anyone is going to find a cure or better treatments, it will be the scientists at ALS TDI. They work together with the ALS Association [ALSA], the Muscular Dystrophy Association [MDA], the Packard Center at Johns Hopkins, the Eleanor and Lou Gehrig Clinic and Motor Neuron Center at Columbia, and Massachusetts General, just to name a few.

You can now click on the link above to subscribe to ALS TDI's podcasts and be updated weekly on the wonderful work they do!!

Last Sunday, I tilted back in my wheelchair, as I always do a few times a day to take the pressure off my back, butt, and tailbone. But this time, I couldn't get the wheelchair to go down again. After about a half-hour of fiddling around -- turning the wheelchair on and off, pressing every button I could find -- it was time to call someone for advice. We knew that there was no way I and the aide [Ellita] could get me out of the wheelchair in that position, so I began to picture the drama of a firehouse call, and a bunch of nosy neighbors watching and giving their two-cents in English, Russian, and Chinese. I don't like drama and I prefer other kinds of attention, so I dreaded that scene. I had a business card from the wheelchair rep at the ALS clinic, so we called the poor guy on his cellphone. He was pretty nice, despite having his Sunday interrupted. He walked Ellita through some controls in the back with no success. Finally, Ellita found a wire that seemed to have a short, fiddled with it, and I got down. So now I can only tilt back just a little, which makes it hard for me to nap in the wheelchair. Even more importantly, I use the tilt function to let gravity help me slide down and back so I can get my body properly seated. Not being able to do that easily and completely, is an inconvenience for sure. Antoinette from ALSA is coming to the rescue with a suitable loaner [go back to December to read about the loaner hell when the wheelchair company brought me what can only be described as a Barcalounger on wheels fitted for a 350-pound man]. I am waiting for the loaner to be delivered before I let the wheelchair go for repair. They are going to give me a new set of tires too while they have the chair. We are never bored at my house!!

New ALS drug slips through telling Phase II clinical trials

2010-01-28T21:00:00.000-05:00

New ALS drug slips through telling Phase II clinical trials
Very exciting!! Epilepsy drug found effective in blocking glutamate and slowing progression of ALS.

New Medicine -- Better for Edema?

2010-01-21T20:39:00.000-05:00

I had discovered that one of the medications that I was taking for hypertension [high blood pressure] called "Azor" was in the category of "calcium channel blockers" and have as the number one side-effect: edema. My swelling, especially around my ankles, has been a bone of contention for me. So on my last clinic visit, I spoke to Dr. Wu, my neurologist, and brought this to her attention. She called my primary doctor and discussed a changeout of the medication. I went to my primary doc last week for my quarterly followup and she told me to stop the Azor and let it go out of my system for about a week before starting the Benicar HCT. I immediately started seeing an improvement in my foot swelling. Now I have begun the Benicar HCT, which contains a diuretic, so it should get even better. While I was at the primary doctor, I got the seasonal flu vaccine, and that night I hardly slept because I felt feverish -- an obvious side effect. Thankfully, it went away the next day.

I think I will be able to manage the cost of the new shoes to go with the new braces, so I will go to the foot doctor in the next couple of weeks. I don't know the results of the overnight sleep test yet, so I don't know if my bi-pap settings will be changed. There is some talk of taking away the bi-pap altogether and switching me to the LTV Ventilator, which is stronger. As I understand it, the bi-pap shoots air in and lets my diaphragm breathe out. But when the diaphragm gets too weak, the ventilator is brought in, because the ventilator not onnly blows air in, but also takes it out, so it actually does the breathing for me. But this is still "non-invasive" intervention. Some patients choose to have a tracheostomy and invasive ventilator, which is a whole other story and a whole different level of care, which means nursing home, or a lot of money [about $100,000 per year] to come home on the trache and vent, which most people cannot afford, and don't even consider an option.

Next week will be six years since my diagnosis. As most of you know, my symptoms started way before then, some of whih I can even trace back a decade or more before diagnosis.

Off-topic: The situation in Haiti is devastating. I am proud of our American troops and volunteer doctors and other medical personnel who have one over there to help. And I must give a shout-out to the Israeli medical personnel who were first on the scene with a fully-equipped temporary hospital, and first to do some rather complex surgeries. In Israel, everybody has to serve in the armed forces, men and women. They go into the service at 18 and attend University after their service. So by the time they get to higher education, they are older than their American counterparts and really know what they want. I have posted a picture of me between two Israeli soldiers [who were so good-looking!] during my trip to Israel in 1987. Enjoy! I wish I still looked like that [sigh]..

Check Out My Newest Article on Associated Content

2010-01-10T08:25:00.000-05:00

How Technology Changed and Enhanced My Life with a Disability
When I was diagnosed with ALS/Lou Gehrig's Disease in 2004, I fought isolation and dependence with the help of life-changing technology. Without it, I would have been institutionalized.
Read More

A New Year and a New Decade

2010-01-05T20:25:00.000-05:00

I am always happy when the holidays are over, but I have to say that I had a great Christmas Day with the family, and I can't believe how my nephew and two nieces are growing up before my eyes. I think everybody learned to be calm when I cough, and it doesn't mean I am going to collapse and die in front of everyone. On the whole, my family and good friends seem to be more tolerant and accepting of the little idiosyncracies of this annoying disease. New Year's Eve, I went to Nancy's party with the Access-a-Ride connection at Long Island Jewish Hospital to Nassau Able-Ride. Both rides were perfectly on time and in sync with each other. Then Louise came to pick us up to take us home. The worst part is having to take the manual push chair, which is a hardship on the aide, and extremely uncomfortable for me. I can't recline, tilt, or otherwise make myself comfortable and take the pressure off my butt. And by the middle of the evening, my braces were killing me. But next time I know to bring along my medication so I won't get so stiff.

I am sick of talking about "the book" and anxious to continue writing it and also socially promote it on the internet via Twitter and Facebook, but I haven't decided if I am going to create a whole new Twitter and/or Facebook alter-ego, or if I am going to do it with my present identity. And I don't now whether to bring back my other blog "Of Jews and Chinese Food" to garner interest and/or to get feedback. As usual, my mind is going in different directions, and I'm all over the place.

I have to make a lot of appointments for the new year, and my ALS clinic is right behind me following up. First, they want to do an oxygen saturation test on me overnight. My respiratory therapist and I decided to do it after the new year, and this is after the new year, so I have to call her and schedule it. I also have to go to my primary care doctor because I need a blood pressure followup, and my neurologist from Cornell called and spoke to her about changing my medication to remove the calcium-channel-blocker in the Azor with Benicar because I discovered that this was causing edema. So I have to take the fasting blood test to give my cholesterol numbers to the dietician at the clnic and also see my doctor about the medication. I have to replace the seat belt on my wheelchair, because it doesn't close anymore due to the thicker cushion it now has to wind around. I prefer to make these calls by Sprint Relay because my friends are all at work and not at a phone all the time, so they end up playing a frustrating game of phone tag, which delays everything for days sometimes. And sometimes when I sit here and talk through the aides, something gets lost in the translation. I also hear that CVS is giving the H1N1 vaccine again, so I have to make sure I do that too. I finally got my replacement cards for my medical insurance since my lost wallet debacle in November. In fact, by now I have replaced everything, so I am back to "normal". It just seems that the days fly by and I get very little done. The other issue of course is my napping during the day, which is an issue of spasticity medication, which has to be addressed with an appointment with the spasticity specialist I was referred to at the Hospital for Special Surgery, to see about alternative treatments. Also, my settings on the bi-pap will probably have to be adjusted after the results of my overnight oxidation test. And, I still haven't picked up my new braces and order a new pair of my $150 [not covered by insurance] Frankenstein shoes to go with the new AFOs.

An Almost-New Wheelchair

2009-12-24T20:55:00.000-05:00

It's Christmas Eve and I am getting ready to go to my family tomorrow for the day. I am honored to be invited to a New Years Eve party on Long Island, but there are challenges getting me there, so I might not be able to go. The lady willing to drive me has an SUV with no back seat, so I would have to lie reclining in the hatch. If you are familiar with ALS, you know that I can't breathe in a reclining position. So I would need someone with a regular car in which I can sit up in a regular seat. Access-a-Ride does not go that far across the border into Nassau, and the Nassau Able-Ride would connect at Long Island Jewish Hospital, but doesn't operate after midnight, so that takes care of the return trip. To rent an ambulette would be prohibitive. There was a man who came up to me recently and gave me his card; he runs a wheelchair-accessible limo service. I'm sure it's expensive, but I will see if I can find the card. It's not easy being disabled and not have a wheelchair van. Those of you who do should count your blessings.

I received my modified wheelchair and got to give back the horror show loaner that was fit for a 350-pound man, and neither reclined, tilted, nor elevated. Wow, if ever I felt my hands were tied!! I couldn't nap, which was a real hardship, and I could hardly reach anything!

Enter my modified wheelchair, which has power footrests, so now I can elevate my feet to alleviate the swelling. It also has pads and guides to help me sit straighter in the chair, rather than leaning over to one side and it keeps my legs straighter rather than splayed. I look less freaky and more like a human being. However, I am higher, so I've had to get used to that, and the seatbelt that I recently paid $46 out-of-pocket to have installed, is too short. So when the wheelchair company comes after the beginning of the year to install my new tires, I hope they will be able to install a longer seatbelt.

Every five years we are entitled to a new wheelchair, but I am not due for that until 2011 because I got this chair in 2006. However, I am distressed to learn that MDA had to eliminate the $2000 grant to first-time wheelchairs. Without that, I never would have been able to get my chair, because the co-pay on a $25.000 wheelchair was covered by this grant. Every charity and non-profit agency has had to budget and remove certain services in this recession Both MDA and ALSA have had to eliminate their transportation program that gets many patients to the ALS clinics. Just another casualty of the economic crunch!!

Clinic Visit -- AFOs, nutrition, wheelchair, etc

2009-12-13T22:55:00.000-05:00

So I went back to the clinic at Cornell, and this time I met the Physical Therapist for the first time who told me that the brace [AFO] I am wearing is really for foot drop, not for the ankle pronation I have. So she said that I should only wear the AFOs when I have to stand, and not throughout the day. She also said I am on way too much medication, most of which isn't even working anymore, and is managing to zap my energy and zonk me out during the day. She and Drs. Lange and Wu are referring me to a spasticity specialist [they used the word "guru"] at the Hospital for Special Surgery to explore alternative methods such as botox injections, and they are really pushing the idea of a baclofen "pump", which I would use to put the anti-spasticity drug directly into my foot when I need it, rather than through my bloodstream to be wasted on the way down, and cause side effects like drowsiness. So I will see about all this

They are finally coming to take my wheelchair this week to upgrade and adjust it, including power footrests that I can use to elevate my feet. I have known that I have not been sitting comfortably in that chair for years, and it is nice to have someone finally listen to me, in fact mention it at first sight of me, because I had given up trying to convince any professional that all was not right.

As for nutrition, the jury is still out until I go to my primary care physician and get my cholesterol and blood sugar numbers again. But the dietician agrees that if I am going to put 4-5 cans of enteral feed down my tube, I need the lowest calorie nutrition possible.

My mantra has been not only "when one door closes, another door opens", but also the second part of that, which is "sometimes we stare at the closed door so long, that we fail to see the door[s] that have opened for us". I have wasted so much time in my life trying to salvage relationships that cannot work, that I could have spent on new projects, jobs, or people.

Thanks, Gripes, Wallet Followup, and Other Frustrations

2009-11-19T20:24:00.000-05:00

First of all: Things I am thankful for:
Sprintip which allows me to do relay phone calls.
My aides who have stuck with me for years, when there are a lot of easier cases they could be working on, like nice little old ladies who really don't need too much help, just someone to be there.
My family, who invited me for Thanksgiving dinner
Louise, who comes with me to support groups and comes over to help with bills.
Judy, who comes to visit and take me to Starbucks, or further if weather permits, and who came with me to see "Ragtime" on Broadway a couple of weeks ago.
My dad, who helps me make ends meet with grocery money, and a new fridge he bought for me this past summer.
My parents who taught me to do things for myself and not depend on others, an independent spirit which got me through this past week, when everybody was so busy, and I needed to make phone calls to replace everything that was in my wallet.
Mary Knudson, whom I have never met, but who has been there for me.
Maddy DeLeon, who made some frustrating phone calls for me trying to track down my wallet, and who was willing to drive to Brooklyn's armpit to retrieve it for me. She is my angel in other ways too.
If I forgot anyone, please forgive me
--------------------------------------------------------------------------------------------------------------------------
Okay, if you don't want to hear the gripes, and think I come off as bitter and hostile, stop reading here, because the reality is that life with ALS is full of frustrations and dealing with stupidity. But please read on so you can see that I am not griping for me, because I am rather strong and I can take it. But think of the little old people who don't question anything, and any other people who don't have the resources and/or presence of mind that I am lucky to retain. One can only imagine the damage done by people who are in positions they should not be in, because they are either uncaring, incompetent, or just plain ignorant or stupid. Or maybe they have been in their jobs so long, underpaid and overworked, ready to retire a long time ago, but stuck in a job they resent or hate, and know that in this bad economy, they have few options. Whatever the reason, the sufferers are the people who are in most need of people who care, have the answers, and are conscientious in their jobs. Not to mention that any of you reading this, could become disabled and/or sick, and could have to deal with these frustrations yourselves.

First, Access-a-Ride and their eight sub-contracting companies. This paratransit service in NYC is wonderful when it works, which I must say is often, is the best thing to happen to people with disabilities. It is door-to-door service anywhere within the five boroughs. And it even connects with Nassau Able-Ride, so you can even go to Long Island. When it is efficient, it is heaven. If you are in a wheelchair, or unable to climb steps, you can use the lift.

But they have their problems, and this month it has been the phones. I reached home on Monday from an appointment in Manhattan, at 4:15. The Access-a-Ride lines to book a trip, close at 5:00. I have often made bookings this late, even at 4:45. I had to book my trip for the next night's ALSA support meeting. For the next 45 minutes, each time I [or the relay operator] dialed, we got a recording "your call cannot be completed as dialed.". At 5:05, just for the hell of it, I dialed and got right through, but guess what? They don't take trip reservations after 5:00. So, I wasn't able to go to my meeting at all.
Representatives from the DNNYC, [which is a wonderful organization to get involved with, if you are disabled and live in NYC], told me that AAR is going through some issues with their phones, exacerbated by internal struggles which have left them understaffed. I hope they resolve these issues quickly, because so many people are dependent on this service, and I wouldn't be able to go to a weekly appointment and monthly support groups without them. And forget about any enjoyment like theater or visiting people.

This turned out for the best, since I woke up Tuesday morning with a raging cold. Next rant: my apartment had been like an icebox for days. So I called the super, who said there didn't seem to be anything wrong. But then he opened the living room radiator to fnd that the valve was bad and there
was no heat coming through. He fixed it within an hour. One of the better things that happened this week. I really like my super. What this is going to cost me, I will find out when I see the maintenance bill. And people with high blood pressure can't take decongestants, so I am pretty miserable, although getting better. I just pray it doesn't turn to pneumonia. Using the cough assist machine can help with that.

And, speaking of AAR, one of their sub-contractors, who told me they had my lost wallet, and to which I took AAR on a cold Saturday morning to retrieve my lost property, claims they don't have itafter all. My friend Maddy made a few followup calls, and was willing to go there again once they said they had it. But, alas, my wallet has slipped into another dimension. No one was available to assist me that weekend. I had no money, no ID, no credit cards. I went to my local Citibank branch, and got a temporary ATM card on Saturday afternoon, and waited for the permanent card, which I have since received. All weekend long, and into the beginning of this week, I managed to report everything lost and requested replacements, either by relay calling or websites. With the exception of one thing: my Medicaid benefits card.

So here's the most ridiculous frustration of all. My Medicaid case worker is the epitomy of the person I described above. He has made so many mistakes, I couldn't list them all, right down to sending a letter threatening to take my homecare away due to my "refusal to cooperate" with the necessary forms. I had submitted the forms to his office but someone neglected to tell hhim about that. I can only picture some poor frail octogenarian getting that notification. Anyway, if you see a compact car with the personalized license plate "Mambo Man", wave to my Medicaid caseworker, [I'm not kidding about this]. So I called Mr. Mambo Man to ask him to help me get a replacement for my Medicaid card and he said "you are not on Medicaid anymore. You left the system". Huh? This was news to me! So I told him he must be mistaken, and gave him my social security number. He admitted he was mixing me up with another Cohen [probably thousands of Cohens]. So then I asked him again how I go about getting my Medicaid card replaced, and he said "call 311 [aka "citizens hotline"] This is a number to report heat outages, ask touristy questions, and the like. I was puzzled, so he said "There is an office on 34th Street, and I will give you a phone number but they never answer the phone". That didn't sound useful at all. Then he added "there is a procedure to follow, but I am not familiar with it, so call them. So I scratched my head, thinking "shouldn't my Medicaid caseworker know the procedure for replacing my card? hmmmm....

So, for those of you who tell me I am bitter, hostile, ungrateful, and negative......don't even imagine how these things are for me to deal with. Think of your great-aunts and uncles, grandparents and frail neighbors dealing with this stuff. And even think of the young-ish person like me, who has to deal with a devastating diagnosis, total dependence on others, loss of abilities, and in the case of something like cancer -- pain and weakness from treatments or surgery -- and imagine having to deal with these frustrations on top of an illness. Maybe then you can have some empathy for the frustrations of bureaucracy. And now they come up with so-called new guidelines for breast-cancer testing. Don't get me started...........

Go Yankees, AFOs/Braces, Flu Shots, Fawssit Shower Unit,Missing Wallet

2009-11-05T12:54:00.003-05:00

The New York Yankees are the World Series Champions! Those of you who know me, know that I am a Mets fan, but when the Mets' season ends, I either stop following baseball, or if the Yankees are in the World Series -- which unfortunately happens more to them than the Mets -- I just root for the Yankees, who are the other New York team. I don't know why I am such a Mets fan, but it's a combination of underdog favoritism, living in Queens for almost half of my life, and being from a Brooklyn Dodgers family [you see, the Yankees and the Dodgers were enemies when the Dodgers were in Brooklyn until the year I was born in 1955, and no self-respecting Dodgers fan became a Yankees fan. Conveniently, the Mets were born ten years after the Dodgers left, so that presented new opportunities for the Yankee-haters]. The ticker-tape [or should I say the toilet paper] parade was fantastic. And it's always nice to look at Derek Jeter, I must admit!!

I finally got fitted for new AFOs [ankle-foot orthotics]. The ones I have are causing me a ton of agony. The ALS clinic had wanted me to wait until the wheelchair is fixed before I got new AFOs, but the wheelchair approval is taking longer than expected and I can't wait anymore. Also, my night aides have been using the Hoyer lift to get me in and out of bed, and that has saved my wounded feet some.

My primary-care doctor ran out of flu-shot serum, so did the ALS/MDA clinic at Columbi, and the Cornell clinic, where I am a patient, never even got any. At Cornell, they are only giving the vaccine to in-patients. So they are giving me a "high-risk patient" letter to bring to Walgreen's or the NYC Board of Health.

Next week, I am getting the hand-held shower unit and the correct shower chair and I will be able to use the Fawssit portable shower I received from the ALSA loan closet.

My wallet is missing. Long story, but I am sure I dropped it on Access-a-Ride, whose office old me they had it and I had to come to collect it. So my aide and I took Access-a-Ride all the way there today, and nobody knew anything about it and nobody could find it. So here I am calling credit card companies by relay operator to cancel the cards and now I have to wait for new credit cards, Medicaid and Medicare IDs, Access-a-Ride ID. Luckily I am only out about $20 cash and of course a wallet. Every phone call takes me ten times longer than a healthy person, and the whole process is so aggravating. Fortunately, I was able to go to my Citibank branch to get a temporary debit card, but I can't use it at the store. Without that, I would have no money. I feel so out-of-sorts and we didn't need a three-hour trek to and from an armpit area of Brooklyn on a Saturday morning. They told me to call someone named Leslie on Monday morning, because my wallet might be in a safe, and he is the only one who has the combination. When I called Thursday night, the man I spoke to said "come in any time and we will have it for you". But the number to book a trip was already closed, and I had to call on Friday for the trip on Saturday. I am totally exhausted!

2009-10-24T20:37:00.001-04:00

Soupy Sales: Master of the Pie-in-the-Face
The slapstick comedy of Soupy Sales in 60s TV was way ahead of its time, and became a model for shows like SNL.
http://www.associatedcontent.comarticle/2320694/soupy_sales_master_of_the_pieintheface.html

Five Reasons ALS Patients Should Get Outside

2009-10-23T09:44:00.000-04:00

Five Reasons ALS Patients Should Get Outside

ferncohen.com

Mandy Patinkin to appear on 'Three Rivers': We wantï¿½more!

2009-10-15T09:50:00.002-04:00

Mandy Patinkin to appear on 'Three Rivers': playing an ALS patient who wants to be taken off life support so he can donate his organs. Reality check -- I have been told that no one will take organs from an ALS patient, so I am curious to see this.

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New MDA Clinic, Wings Over Wall Street, Good Voting Experiences

2009-10-02T10:50:00.014-04:00

Do you know that under present laws, a lot of patients with rare diseases can't be included in clinical trials, because public health insurance won't pay? Read how a proposed law, if passed, will change all that

I always suspected ALS was connected to immunity and the immune system. This article will tell you I was right

I am attending the new MDA clinic at Weill-Cornell/NY Presbyterian Hospital, headed by Dr. Dale Lange. They have a wheelchair vendor there, who was horrified, along with the occupational therapist, at the way I was seated, and the degeneration of my hip that resulted from this. I am getting a whole wheelchair revamping, but as usual the paperwork takes a load of time, so I am waiting.

I was privileged to be invited to "Wings Over Wall Street", an event that has raised millions for MDA/ALS research. Pictured above are the event's founder, Warren Schiffer and myself.

I am also happy to report that my voting experience on the new wheelchair-accessible BMD [ballot marking device] at the polling place in my neighborhood, was a good one. The machine worked perfectly for both the primary and the runoff, and the staff was well-trained. I think I was the only person in the whole city who had anything good to say. Reports from other people with disabilities were not as positive as mine. It's amazing that Queens did what Manhattan couldn't.

Always Check Your Medications Side Effects and Contraindications

2009-09-17T21:05:00.003-04:00

I have been noticing my ankle and foot edema has gotten so much worse in the last six months, and even worsening the last three months. Nothing I seemed to be doing, was helping. I wear the T.E.D. stockings from 8am until at least 6pm, and sometimes until I go to bed at 10 or 11. I periodically raise my legs, and even try to move them as much as I can. Furthermore, I have been having my blood pressure checked at physical therapy, and it's been as low as 85 over 50.

So I started to do a little research of my own and saw something that said "causes of edema" and listed as a cause "certain medications". So I looked through this list of medications and saw "calcium channel blockers" which is one of the classes of blood pressure medications. About six months ago, my primary care doctor had added a drug called Azor. When my blood pressure failed to go down enough, she increased the Azor. Well, my edema had started to go crazy about the time she added Azor, and got even worse when she increased the Azor three months ago. Well, Azor is a calcium channel blocker and was listed as one of the drugs whose side effect is edema.

Since my blood pressure hads been low lately, I went to see the primary care doc and told her about the edema and what I read about the Azor, and how my blood pressure had been so low lately. She halved the Azor dosage, and the edema has gone down a little, although I would like it to go down lower.

But, case in point: always read about your new medications, especially the side-effects, contraindications, and interactions, especially if -- like me-- you have multiple doctors prescribing your medications!!

2009-09-08T20:55:00.001-04:00

"The Enthusiast" by Charlie Haas
This main character in this Charlie Haas novel edits quirky "Enthusiast" magazines, and deals with the consequences of an attachment to ideals and self-discovery.
http://www.associatedcontent.comarticle/2153953/the_enthusiast_by_charlie_haas.html

RIP Edward "Ted" Kennedy

2009-09-01T14:13:00.005-04:00

This is a few days late, but through all the memorials for Teddy Kennedy over the weekend, I learned what afriend he was to people with disabilities. In fact, there might not be an Americans with Disabilities Act, if not for Senator Kennedy, and he was a driving force behind the Family Leave Act, among others. I have said many times how the ADA has made my life so much easier, and someone who was disabled before 1990, can really see the difference. We have a way to go, because now members of Congress are pushing the envelope toward the concept of "visitability", which is the concept that everyone's home and every building should be accessible whether or not there is someone who lives or works there, but for the benefit of anyone who has to visit. I can't tell you how many times people with disabilities are invited somewhere, only to find out they can't attend due ro the inaccessibility of the venue/home

Anyway please read my tribute to Senator Kennedy by clicking here.

Update

2009-08-19T11:30:00.006-04:00

I am really excited about a new Indian restaurant in town. Sajni is on Queens Blvd around 65th and they have the most awesome buffet for lunch -- inexpensive! The owner knows all his clients, and they play Bollywood videos while you eat! And most of it is soft food that is easy for me to eat! I am in love!

Unfortunately, my other favorite newish place, Tierra Sana, lost their hold and couldn't stay afloat. It was good vegan food, with wi-fi and very East Village decor, but it was a little pricey. I couldn't manage to get people to go with me, probably because of the price or maybe too esoteric. Obviously not enough support from the neighborhood. That's why I am happy to see such support for Sajni.

Summer is finally here, about 2 months late, but I'll take it. I am enjoying myself on "concrete beach" in front of my building -- no sand or ocean, but lots of people-watching and sunshine, squirrels and birds.

Thank you for all the feedback on my post of 7/26 re the ad for MND/ALS with Sarah Ezekiel, which was made for British TV. In case you missed the post, you can chcck it out any time and follow the link to watch the video

In the meantime, you can follow me on Twitter
and/or "friend" me on Facebook

My PEG tube replacement

2009-08-06T10:13:00.004-04:00

I was surprised recently when I expressed to someone that I didn't have the time to do something, and she said "why, what do you do all day?". Anyone who reads this will see how I can literally be out all day for a 5-minute procedure. When you have to rely on Access-a-Ride or an ambulette, you spend a lot of time sitting around and waiting. And, anyone who goes to a Medicare/Medicare/HMO doctor can attest to the fact that a 30-minute appointment means a 3-hour ordeal of waiting in the waiting room, then the exam room, then waiying again while the doctor will come "right back", and is attendng to other patients who have the same appointment as you.

I've learned that, when blogging it is not cool to mention names of professionals or institutions, or even people, unless you don't mind being googled and asked to elaborate, or even sued. So email me privately if you want names and I will reveal if I can. If I have something really nice to say, I will of course mention names.

Anyway, this time, I had to specifically request that the hospital change my ambulette company because the ambulette company they have been sending does not have the mechanical lifts. Instead, they sent vans with ramps that are used to using with manual wheelchairs that they push. But the ramps are steep and dangerous for an electric wheelchair. I had to say a prayer as I got to the top and the wheelchair literally jumped into the van and risked ramming into whatever was in front of it [sometimes another wheelchair passenger]. So that worked out, even though I was supposed to be at the endoscopy registration by 10:30 and the ambulette was supposed to come to pick us up between 9 and 9:30, and didn't arrive until 10:15 and picked up someone else, taking a roundabout route to the city, finally gettng to the hospital after 11. Louise traveled separately, and was there for a while when we got there.

Then began the paperwork, signing and filling out multiple pages and receiving my 100th packet of papers outlining patient privacy. This was in a room that was so crowded that I had to stay outside in the hallway with the wheelchair. The hospital I went to is very old, and very drab. The walls are in bad need of a paint job and the nurse directing "traffic" looked like she really hated being there. She handed me a locker key, told me to enter a depressingly dark locker room whose dressing cubicles couldn't fit my wheelchair, and I had to take off everything from the waist up and put on a hospital gown. I thought the whole atmosphere was kind of depressing for people going through procedures which could be very frightening. My initial PEG tube placement was in this hospital, and I recall being alone in recovery and the whole next day in a hospital room with a hospital staff that yelled at me because they thought I was deaf, mentally challenged, or both. This time, I had a bunch of people standing by and promising me that would not happen again. Still, I dreaded the possibility of staying overnight.

When my GI doctor came in, he deferred judgement to a nurse named Frank, who had been there for my first procedure, as well as when the tip of my feeding tube had to be relaced about 2 years ago. Anyway, he said to the doctor: "this thing was put in 4 years ago. There's no way it's not gonna crack." and he turned to me and said "you're gonna have to be put under so the doctor can do it endoscopically". The doc said "I know that's not what you want to hear". And I wrote on my board "please please try the other way first", and he said "Well, we'll try, but I don't think it'll work. This tube is old!"

So they had me wheel myself in my chair and tilt it back and recline. Then I saw the anesthesiologist come in -- I recognized his face and South African accent from five years ago. They let Ellita come in and hook up my bi-pap breathing ventilator [which we brought from home]l, which was a good move. They told me they were going to give me a light anesthesia, which turned out to be Michael Jackson's favorite-- propofol aka diprofan. I remember him sticking the needle in my hand and the next thing I heard was "Fern, you're all done". I went to the recovery room for about an hour, and I was free to go.

By this time it was after 1, and the recovery room nurse called my ambulette to pick me up and said they would pick me up at the emergency room entrance. Now, just to say why I take the ambulette in these cases instead of Access-a-Ride. To take the later, you have to book one to two days in advance and tell them what time to pick up for the return. With certain doctor appointments and a procedure that I just described, it is impossible to know exactly when I will be finished. I my case above, I could have even had to stay overnight. So it was impossible to book a return pickup time. But this turned out to be the ambulette ride from hell.

First off, we were waiting for over an hour at the emergency exit like we were told to do. Suddenly I got the idea to have a lok at the vehicles standing at the corner, about 3/4 block down the street. Sure enough, my ambulette was waiting there. I called Louise and Ellita to come down the street [they'd been waiting in the hot sun] and Ellita and I boarded. There was already a couple on board, the wife of which was in a wheelchair in front of mine. We had another pickup along the way, and we ended up getting in my door about 4pm and rushed out for an early dinner at a fabulous new little Indian restaurant on Queen Blvd. So out for about 6 hours for a 5-minute procedure.

But, here's the "hellishness" of the ride: the couple who had been in the ambulette when we boarded, looked like they were right out of "central casting". They could have played the part of trailer-park residents. The husband had no front teeth, scraggly hair and tattoos. His skinniness made him look almost like a junkie. The wife, who I inferred was the patient, looked unhealthy indeed. I thinnk I overheard somethhing about dialysis, and they seemed to be regular clients who knew the driver with familiarity. When we arrived in Astoria, Queens to let off the fifth passenger, the husband also got out of the van, motioned for the driver to wait [which didn't make us happy, since we were dying to get home, and I hadn't eaten since 11pm the night before]. Well, this man lit a cigarette, took a few drags himself and then, to my dismay, handed it to his wife sitting in the van in her wheelchair in front of me. It's impossible to protest when you can't speak and especially when you're choking from the smoke. So Ellita told them I had respiratory problems and they finally put the cigarette out, not a moment too soon.

By the time the driver started up the van, the front was full of smoke and I began coughing up a storm. When I stiffened up and couldn't help kicking the woman's wheelchair, she went beserk on me. The husband saw I was choking and said to Ellita "is she okay?" and Ellita said "She's coughing from the smoking!" The woman said "well what do you want me to do? I had to have a smoke!" and the man said "Oh, if I knew, I would'na done that!" But he didn't exactly ask us if it was okay.

Here's the best part. When we arrived in front of my building, they both yelled out "this is so nice!" and the woman said to Ellita "I would like to live here. Can you tell me how she [meaning me] got into such a nice building? How can I get in here?" And Ellita said "you have to buy a co-op"
"Oh, it's nice to have money" she said.
Ha! She should only know!!

Leona Lewis Rescues Homeless Bunny - Paw Nation

2009-08-01T12:35:00.001-04:00

Leona Lewis Rescues Homeless Bunny - Paw Nation

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What Do You Think? Should This Ad be Banned?

2009-07-26T12:02:00.003-04:00

My friend Sarah Ezekiel is a PALS who lives in London. There is a TV ad she starred in, a public service announcement from the MND Association in the UK. MND stands for Motor Neuron Disease, which is what ALS/Lou Gehrig's Disease is called outside of North America. The ad is disturbing, but no more disturbing than the PSAs for stop-smoking campaigns, which show people with laryngectomy holes in their throats, shots of rotting lungs, and people gasping for air. You can read the article [link above] from a UK newspaper, and you can watch the video at this link

Disturbing? Yes. It's supposed to be. Scary? Of course. But you can turn the video or the TV off. We can't turn off ALS/MND. Why is this disease so scary to people? I'd be interested in getting feedback from people, especially from people who don't live ALS/MND firsthand, like patients and caregivers.

New Study Shows Agent Can Improve Muscle Strength, Size, in Mouse ALS Model

2009-07-23T14:08:00.003-04:00

click on the link above for information about a phase I trial at Johns Hopkins' ALS Packard Center in Baltimore of a new agent which is believed to slow down muscle-wasting in ALS patients.

PEG Feeding Tube Replacement, etc.

2009-07-21T08:49:00.003-04:00

I haven't updated in a while because I've been wasting too much time on Facebook and Twitter [fec139, if you'd like to follow me].

A lot has been happening. Of course, the July 4 Yankees vs. Blue Jays game, which was part of a nationwide collaboration between Major League Baseball, was wonderful [see link in previous post for the full story].

It's been time to replace my PEG [feeding] tube. It is leaking and kind of stinky if you get your nose up to it, although undetectable through my clothing. A PEG tube usually lasts for about 2 years, but I have had mine for almost four. The worst scenario is if the tube breaks, or otherwise causes a trip to the ER -- especially at night or during the weekend -- only to be at the mercy of an attending or intern at a local hospital, where they know nothing about ALS. I've been there and done that, and have no desire to repeat that otdeal. The nurse at the ALS clinic told me it would probably just be able to be done right in the gastroenterologist's [GI doctor's] office. This turns out not to be true. He has to do it in the Endoscopy suite at Beth Israel Medical Center [BIMC]. Now, here is what frightens me: there is a 90% chance that the PEG will be able to be replaced with no complications and no anesthesia. But it's the 10% that frightens me. There is a 10% chance that the tube will crack and then they will have to put me under anesthesia and go in through my esophagus. I am terrified of thid because my FVC [forced bital capacity] respiration is so low. I had the original tube put in so early in the disease, as advised, because I was told to do it while I was still strong enough.

So, I am hoping I am one of the 90% that can have this done without anesthesia and get up ad leave the hospital that same day. Everybody pray for me. Besides, I have Mets tickets at the new Citifield on Sunday, August 2, which is two days later, and I am determined to get there!!

A Day of Pride and Hopefulness at Yankee Stadium

2009-07-16T10:02:00.000-04:00

Read my latest guest-blogger post on the ALS Association of Greater NY Blog, about my experience at Yankee Stadium on July 4, which was the 70th anniversary of Lou Gehrig's "Luckiest Man" speech.
ferncohen.com

Real Housewives Of New Jersey Host An ALS/Lou Gehrig's Disease Fundraiser | BricksAndStonesGossip.com

2009-07-14T18:52:00.001-04:00

Real Housewives Of New Jersey Host An ALS/Lou Gehrig's Disease Fundraiser | BricksAndStonesGossip.com

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2009-07-12T16:48:00.001-04:00

How Michael Jackson and MTV Changed Our Lives
Part memoir and part history, the evolution of the music industry in the MTV/Michael Jackson era.
http://www.associatedcontent.comarticle/1911832/how_michael_jackson_and_mtv_changed.html

Volunteering to Make Yourself Feel Good

2009-06-27T08:19:00.003-04:00

A while ago I wrote an article for Associated Content entitled "The Payoff of Volunteer Work". If I do say so myself, it's good reading. And I don't recommend reading it just to promote myself, but rather to give some perspective to an online exchange I am having on Facebook with another patient. She was saying that when people visited her or helped her out, some were only doing it for their own benefit. I agree, but I don't have a problem with that. I even have a friend, Maddy, who says that asking her for help is actually giving her some pleasure and fulfillment. So she begs me all the time to call on her for assistance, which she has given to me in leaps and bounds. I still feel uncomfortable asking for help, even from her, and from other friends who have been so generous.

But let's face it: aside from figures like Mother Teresa and Mahatma Gandhi, we are not totally altruistic. We all reap benefits from doing good, whether it be perceived better place in heaven, a tax deduction, something to put on a work resumé or a college application, satisfaction of community service requirements, opportunity to meet people, easing your own loneliness, or just a good feeling. Even easing a feeling of guilt for some wrong you have committed in the past, is valid reason for helping someone, like the former Ku Klux Klansman who was recently on television saying that he now volunteers to help poor blacks in the South.

I did a lot of volunteer work before ALS. And I won't lie: I reaped a lot of benefit. I did the 12-mile Walk for MS, and the March of Dimes Walk every year. These walks gave me exercise, the chance to see thousands of people, and dozens of free tee-shirts to show for it. I volunteered for Broadway Cares/Equity Fights AIDS very often. Through BC/EFA I met a lot of cool friends, two of whom I am still in touch with 15 years later. I also met celebrities volunteering at BC/EFA events, and every once in a while they threw the volunteers free theater tickets. I got to meet people I would never have met otherwise, and I even got invited to private parties through the friends I met. I even volunteered as an usher for off-Broadway shows. Unlike the Broadway shows, which use paid union ushers, many off-Broadway theaters and regional companies use volunteer ushers. It's a great way to see the show for free because once you seat the patrons, you can take a seat and watch the show. I've enjoyed free food, gift bags, volunteer parties, pictures with celebrities, and other freebies by volunteering at events. Sometimes I received the same fancy gift bags and fancy food enjoyed by the rich and famous who had paid several hundred dollars to attend. When I worked the phone bank at the Gay Mens Health Crisis to recruit people for the annual AIDS Walk, a local bakery donated baked goods, soda, and sandwiches every night. Free food is always good.

What do you get from volunteering with an ALS patient? You won't meet celebrities, at least not with me. You'd have to somehow find satisfaction from the fact that you're making someone happy to get out or have a little companionship. You would have to have a lot of patience. Are there better ways to spend your time? Sure! But I don't question anyone's motives, although the lady I was conversing with this morning has a problem with certain motives, and that's her prerogative. The only motive I have a problem with is no motive at all, because that leads to resentment. I don't want anyone saying "What am I doing here?" or "Why do I have to do this?" or "How do I get out of this?". I'd rather be alone than know that anyone is doing anything for me that they really resent. I don't think anyone owes me anything, even though I do get angry sometimes that some people from my past have disappeared, and hurt that others I have felt close to in the past do not feel close enough in return to care about me. Maybe it's hard to find out that my feelings are not returned, but maybe I needed to find out. When the going gets tough you really do find out who your friends are, and sometimes they're not who you think they are. But if we both get something out of our association -- I get help or company, and they get satisfaction -- it's beneficial.

update

2009-06-23T21:03:00.004-04:00

I knew the day would come when I would have to say goodbye to my tub-slider. It had been loaned to me from ALSA and it has been sitting in my storage space in the basement, in anticipation of the bathroom renovation which never came, and never will. So ALSA called and asked if I had the renovation yet and if I were using the shower equipment, which retails for $1800, and which can't work n my bathroom the way it is. I had to admit that I wasn't using it, and give it up to someone who needs it. It's only right, but it was tough for me to face the realization that I won't be able to get in the bathroom again. On Monday morning, I have a night aide who graciously stays another 1/2 hour so that she can work with the morning aide to move me a few steps into the shower and give me a shower and wash my hair. But with more room in the bathroom, they would be able to wheel me in a special chair and slide me in the shower. That way, one aide could do it, and I could shower every day. I feel less than human, but I will have to get used to it, because I will never be able to get $7,000 together to renovate.

I have connected on Facebook with a lot of my former students, and classmates from high school. My former students are all telling me how influential I was in their lives. Veteran teachers always told me in my darkest hours "five years after they graduate, they will come back and tell you that you were a favorite teacher. Yup, that's about right. As a matter of fact, several of them have become teachers themselves, and one student -- one of my most talkative and disruptive girls -- told me her students never shut up and it drives her crazy. She apologized to me for being such a pain, because now she's on the other side and knows how it feels. Funny how life turns out.

Sometimes I wish I could wear a sign saying "I had a life before this. I was slim and cute too. I didn't always look like this. I was a teacher and spoke three languages fluently, and studied three more. There's a brain in this broken body. Talk to me." But it wouldn't do any good. On the internet people don't have to look at me, so it's easier. When people email and ask how I am, I tell them "great!" Anything less than that is misinterpreted as bitter. I've found out that I am not allowed to be sad or angry, and I must be an inspiration at all times. It doesn't seem fair that healthy people are allowed to scream and complain, but I am told that nobody will want to be around me unless I am grateful to be alive, realize that there are people worse off than I, and am an inspiration 24/7. I don't know why my healthier counterparts are allowed to forget how lucky they are, but that's the way it is.

I am grateful to have celebrated another birthday earlier this month. On my birthday weekend, one of my aides took me to lunch, her mother bought me a top. Then my family came out to Queens and took me to dinner. The following weekend, Louise and Judy took me for Thai food. Of course, I am very grateful for that.

My braces[AFOs] need to be adjusted, and my shoes have stretched out, making standing very painful until it gets fixed. The shoes are not covered by insurance. Although I can pay the $150, it kills me that products for disabled people are so overpriced. My physical therapy is managing to stave off painful spasms, and the therapists get me to stand and balance, which feels good. I am working out with light weights to preserve the muscle tone I have. I am still working on a program of nutrition to reduce my sugar, stay healthy, and drop the weight I gained. I'm discouraged by the fact that the nutritionist at my clinic hasn't gotten back to me according to her promise to investigate an alternative to the sugar-filled products out there. And my wheelchair seatbelt broke again, but Medicare won't pay for another one, so I have to make my own arrangements for the repair.

Why Go To A Support Group?

2009-06-19T16:28:00.002-04:00

Why Go To A Support Group?To read my latest guest-blogger post on the ALS Association of Greater NY official blog, click on either of the links aove.

Nutrition

2009-06-11T11:09:00.005-04:00

I have been doing a lot of research on nutrition. My triglycerides are high and I am really bothered by the amount of sugar in Osmolite, which goes in my feeding tube. I am still plagued by my new obesity, which is not only unattractive but extremely uncomfortable for me and for the aides who have to transfer me. When I am at physical therapy, the room is lined with mirrors and it depresses me to see myself. It further disturbs me that there don't seem to be any alternatives out there. They are all filled with sugars! I want to make my own mixtures, so I am looking at recipes. Then, how to get the aides to keep mixing up these concoctions for me?

I think these tube feeds are made for people whose weight has gone down to nothing, and that is not the case with me. I know I am going to get a bunch of emails from well-meaning people who want to make me feel good by convincing me that I am beautiful anyway, that my weight is not important. Thank you, but It's not about that. When you can no longer apply makeup, take regular showers, insert contact lenses, and have to be confined to a wheelchair, obesity is not something you want to deal with. It's unhealthy, unhygienic, and yes unattractive to someone like me who has never had more than 20 pounds to lose, and that was optional because it was a matter of clothing no longer fitting, and never affected my health.

This is not just some shallow desire. It is a challenge I need to handle. I have been researching mixtures that will be easy to blend up and provide all the nutrients I need. I have been taking supplements. And I have been trying to do exercises in the wheelchair to fill in between my twice-weekly physical therapy sessions. Suggestions?

iPhone or iPodTouch Can Be Assistive Communication Device

2009-05-28T12:15:00.008-04:00

I have wanted an iPod Touch for a while now and I am saving up to get one, but here's a new reason for me to want one: You can buy an "app" for the iPhone or the iPod Touch called Proloquo 2Go and have a small portable text-to-speech device. They are using this also for autistic kids and stroke survivors. Of course you have to be able to use your hands, but it beats lugging around the heavy Mercury, especially on short outings, to the store for example. Click on the title line, above to read the story. Now, I have to do what I can to get this!

Update May 22, 2009

2009-05-22T09:42:00.005-04:00

I feel like I have been running around the past few weeks, but it has been a great few weeks of going places and seeing people.

On Mother's Day, I took my caregiver Ellita to Applebee's for a Mother's Day lunch. And one Friday night Judy visited and we went to Anna's on Queens Blvd. Any opportunity to get out of the house and see people, is so welcome! I am grateful for the fun I had this spring. The three Saturdays in Valerie's van, two to the beach, were glorious!

On May 11, I was invited to a research reception hosted by MDA-ALS Division and Wings Over Wall Streetat Chelsea Pier. One of the best parts was utilizing the hour before the event started to explore the pier, which I hadn't visited in years! But I couldn't believe how nice this reception was, and how everybody from MDA and Wings treated me with such attention and caring. I felt so comfortable.

I also attended my annual shareholders meeting at my co-op. I had to laugh when the management company talked only to my aide -- "tell her to sign here", "ask her...etc etc...." the ignorance of people toward the disabled still makes me frustrated, but I don't express myself too much anymore because a) it's an exhausting waste of my precious energy, b) they never get it anyway, and c) when I try to to talk it makes it worse because it scares them, they think I'm mentally challenged, or they think I'm crazy, or all of the above, and if I write on my board, it takes too long. I rely on the aide or friend who is with me, to say "She can hear you; please speak to her", and I am so grateful when that happens. Caregivers and friends of people with disabilities have to advocate for those who can't do it themselves, And the second indignity, if you will, was that my ballot was already signed by the co-op president. "Hahahaha" I said to myself, "I'm here, and I am voting"

May 16 was the 2nd annual Manhattan Walk to D'Feet ALS along Hudson River Park from Charles Street to West 54th Street. Despite rain in the early morning, and dreariness at the beginning of the walk, it turned out to be a beautiful day. I had two new members of Fern's Fighters -- Jessica Aguilar, one of my former AES students, and her friend Jennifer. After the walk, we went to grab a bite. This was a reality check, especially for Jessica and Jennifer. We went to Tenth Avenue between East 56th and East 57th Street. There must have been about 10 reasonably-priced places to have lunch, and I could not get into any of them, because of steps and no ramp. A Boston Market looked promising because they had about 5 steps going up and a wheelchair lift. But, as usual in places with lifts, the lift "wasn't working" , which usually means a staff too lazy to get the key and operate it, or just too lazy to report it broken and get it fixed. The thing with the ADA [Americans With Disabilities Act], is that there is nobody going around to check that retail establishments are complying; they wait until someone puts in a complaint. I may send an email to the corporate website, but I am not about to fight local eateries in a neighborhood that I don't even frequent. So the others went inside to eat, and I waited outside while Ellita got me a takeout meal for later. But I kept thinking of a scene from a movie that I saw recently that took place in the South in the 1930s, where a singer was touring, and couldn't go into certain restaurants that wouldn't serve African-Americans. So his white band members went in to eat and brought food out to him. Hmmm, do you see a parallel here?

One disappointment was that, for the first time in four years, I could not join the Ride for Life, because they did not come within the five boroughs this year. They stayed in Long Island, primarily in Suffolk County. My plans to meet up with them in Nassau County by an Access-a-Ride and Nassau Able-Ride had to be scrapped because of an uncertain ending point and time. People with wheelchair vans don't know how lucky they are. Those of us who rely on public paratransit, though we are fortunate to have it in this area, have to give times and places for pickup; we can't be spontaneous at all.

My quarterly visit to the ALS Clinic at Beth Israel was positive. I am pretty stable -- legs pretty useless, but arms even stronger since physical therapy. So the doctor wants me to continue PT, since it is benefiting me. I have to get my braces adjusted because they are cutting into my feet and killing me. And the shoes I wear with the braces are very stretched out, adding to the problem. So off I go to buy another pair of grossly overpriced shoes. Oh well.......

What Do I Do, What Do I Say?

2009-05-21T08:34:00.002-04:00

Click on the title above to read my newest blog entry, which was published on the official blog of the ALS Association of Greater NY.

Update May 5, 2009

2009-05-04T23:12:00.003-04:00

Last Saturday was the third and last Saturday in Valerie's van. I decided that, even though I live in a Russian neighborhood, I can't stay away from hearing Russian spoken, and stores with Cyrillic signs [which I can still read, by the way, from my Russian class at Long Beach HS -- thank you Mr. Ritter]. So when we realized it would be in the 80s, I suggested we set out for Brighton Beach. Now, this is a different population from the immigrants in my neighborhood. The Rego Park immigrants are from the Central Asian former Soviet Republics -- Uzbekistan, Azerbaijan, and Kazakhstan. The immigrants in my neighborhood started to immigrate maybe 20 years ago. They are country people from the farms -- peasants. They dress in old-world clothing, and my neighborhood looks like a scene from "Borat" or "Fiddler on the Roof".

The Russians in Brighton came over a generation before the Rego Park immigrants. Their children are having children already. They are from Russia, many from Moscow. They have actually taken what was a declining neighborhood and made it better. Nonetheless, the Brighton Beach boardwalk is great people-watching. Of course, there is mostly Russian spoken, and you can see everybody having lunch at the restaurants on the boardwalk. The boardwalk is in great shape and twice the width of the boardwalks in Rockaway or Long Beach. It reminded me of Europe. It was a great afternoon

Friday night, Judy and I went to Starbucks, always a place for characters. The baristas all know us, and one of them moved a woman from the handicapped table to another table, in our honor. We noticed that night a character sitting in a stool by the counter, talking at the top of his lungs to the barista about his personal, as if he were in a bar confiding in the bartender. But the best was a strange character with a borderline personality holding a vinyl LP, which Judy happened to catch the title of -- "The Best of Myron Cohen" [no relation to me that I know of. Look up Myron Cohen in Wikipedia. He was a comedian of the Borscht Belt Catskills. And he was always on Ed Sullivan. We sat through his routines while waiting for our British boy groups to appear. These guys were always appropriate for prime time TV, although when they performed in the Catskills hotels, they were always on late at night, so the guests could put the kids to bed. Then these comedians got raunchy. As a child, we used to take a 3-hour drive to Loch Sheldrake, where my Uncle Normie Pasternack and Aunt Ruth [my dad's sister] ran the coffee shop at Brown's Hotel in the Borscht Belt. Hey, I think I have a story to publish online or a chapter of my book.

Speaking of which, there have been too many opportunities for an attention-challenged procrastinator like me. I find myself getting hooked into Facebook and Twitter and losing track of time. Valerie gave me a whole box full of clothing custom-made for Lewis, with velcro closures.

I ran into problems when I found out that NYSARC didn't pay a few of my important bills. I had to get a special cord for my new fax [I found out my old fax was sending black pages, which I only found out after the bills weren't paid and I called NYSARC, who said "oh, yeah by the way....... nice]. So Louise has been faxing them at her office. Despite getting confirmatiions, NYSARC claimed they didn't get some of them. So more followup has to come from me.

The seatbelt on my wheelchair -- busted again.
Debbie came last Sunday. We bullshitted for a while and then went in 80 degree weather to have ice cream at Baskin Robbins.
Ride for Life starts next week. I am possibly going an extra day because they offered to pick me up with a wheelchair van. So I will probably do two days.
Fern's Fighters will be doing the Manhattan Walk to D'Feet on May 16. The Long Island Walk to D'Feet is on Sept 12 this year.
I'm sick of hearing about swine flu.....excuse me, I mean H1N1.......I don't want to be a "piggist"
There is now a Facebook group for AES alums, thanks to this former French/Spanish teacher.
They're building condos across the street from me -- purchase price $1 million and up! Huh???

What do you say to a dying man?

2009-04-20T11:25:00.004-04:00

Since I was planning to write about this topic, I came across this article and thought I would put it out there so those of you who are interested, can read it, mull it over, and then read my response to it later, when I get around to it. I agree with the writer of the article on some points, but not on others. Then again, he is newly-diagnosed, and I am in my sixth year since diagnosis, so I have a whole different perspective. To read the article, click on the title.

Nancy O'Dell, Outings in a Wheechair Van, I May See the Beach

2009-04-18T09:56:00.004-04:00

Nancy O'Dell, co-host of TV's "Access Hollywood", lost her mom recently to ALS. Despite her mom's passing, I am hoping Nancy will continue to fight for an ALS cure. Read more about that, here. The dilemma with ALS is that often after the death of the patient, the family and friends seem to pull away from the ALS community. Except for the small percentage of "familial" ALS cases, I guess most people whose lives have been touched by ALS, feel that the disease will probably never touch their lives again. So they go back to raising money and awareness of cancer, AIDS, or some other disease that is much more likely to affect them or a family member or friend. They prefer to forget the whole ALS experience. And, since most ALS patients die within two years of diagnosis, there isn't a lot of long-term follow-through.

The best possible arrangement an ALS patient can possibly have is a wheelchair van. But not everybody can have this, because either they can't afford it, or they don't have a caregiver who can drive it, or both. In my case, I can't have a wheelchair van for both of those reasons. And that is why I have to depend on Access-a-Ride, which must be scheduled a day in advance, and can be terribly unreliable, or public buses, which can be inconvenient. In my case I also don't have a lot of companions who have the time to spend going places with me, while putting up with those modes of transportation.

Last Saturday, I had a special privilege. My friend Valerie, who unfortunately lost her husband to ALS last fall, picked me up in the wheelchair van she still had, last Saturday. Everyone knows two of my favorite places are Trader Joe, and the beach. Well, Valerie, her 6-year-old daughter Layla, and Louise and I, went in the wheelchair van to Trader Joe, but the rain ruined our beach plans. What a gift to be able to pull into the van without having to do a difficult transfer, ride where we wanted, and when we wanted, on no set schedule! Just a laid-back afternoon of Trader Joe and snacks at a Chinese bakery in Forest Hills.

The good news is that it is going to be 70 degrees today, and Valerie is going to pick me up again for a trip to the boardwalk. I have not seen a beach in three years, and I have been very depressed about this! By the way, disabled people can actually go onto the sand at Long Beach, Brighton, Coney Island, Rockaway, and Orchard Beach, due to mats they have installed. For all ththose skeptics who don't believe me, or who don't think a wheelchair-bound person can enjoy the beach, check out this article or this one, with great pictures
and also a listing of exact locations for the mats. I might add that Forest Hills is one of the many accessible stations of the Long Island Railroad [LIRR], which goes to Long Beach and Jones Beach [the latter with a bus connection from Freeport] For the webpage to look up a list of accessible LIRR stations, click here.

Since Valerie has to return te van this week, today will be my last shot at going in such style. I am really looking forward to it!

Any Twitter-ers Out There? Please help!

2009-04-15T19:48:00.002-04:00

ALS/TDI [ALS Therapy Development Institute] has an opportunity for anyone on Twitter [go to twitter.com to join] to join in the campaign to get a $100,000 donation from Hugh Jackman!

Go to this link for instructions. You have to tweet often, and ask your followers to retweet! Thanks!

Fern Cohen Discusses Blogging vs. Twitter

2009-04-07T14:03:00.000-04:00

Fern Cohen Discusses Blogging vs. Twitter

ferncohen.com

Update April 4, 2009

2009-04-04T10:05:00.005-04:00

Louise brought me to see "33 Variations", a play about a musicologist who has ALS. It was my first time in a Broadway theater since late 2003. It was exciting to me to be in a Broadway theater again, and even more exciting still to see the 71-year-old Fonda in her first Broadway play in over 40 years. There is no excuse for a wheelchair-bound person to stay away from Broadway. All the theaters are accessible, and there are wheelchair spots in every theater. You can book wheelchair spots online or by phone, and as a wheelchair user, you sit in the orchestra section, and your companion gets a seat as close to you as possible. And the best part is that you both [wheelchair-user and companion] get the lowest-priced ticket. I also joined a program through the Theater Development Fund [TDF], called TAP for people with disabilities [PWDs], which sends lower-priced offers every month. So there is no reason for PWDs to stay away from Broadway, or museums or other attractions for that matter. They are all accessible, except for the Lower East Side Tenement Museum because of the landmark status of its building.

One weekend when Judy could not come, Louise came over to take me to Starbucks. My friend Andrea came one Saturday, stayed the whole afternoon, and really brightened my day. My former student Jessica Aguilar came last Sunday to help me with some reorganizing that really made a difference. And my weekly visits with Judy are always something I look forward to. I still need to measure the width of the hallway leading into the bathroom so I can hang curtains from a tension rod. We had to take off the bathroom door so I can get up to the doorway for my once-weekly trip to the bathroom. And, I went with Judy to shop for a cotton rug for the bottom of Chelsea''s cage, but all we saw were rag rugs. Then Debbie sent me a rag rug, which we "installed" yesterday. Chelsea slept in her litter box all night. She will have nothing to do with the new rug. It probably has to do with the nubby nature of the rug. Her own cotton rug is in the laundry, and there were no rugs like it in Bed, Bath, and Beyond. So my aide and I switched out a rug that she loves to lay on, which was on the floor, and put the rag-rug on the floor. Problem solved!

I have my portable vent. on a chair when it is recharging; otherwise, it is on the back of my wheelchair, but it needs two people to put it there. The purpose is to enable me to go out for up to six hours when I am totally vent-dependent, but right now, I use it for when I am out and feel short-of breath or sleepy from not enough oxygen. And the ventilator has to be taken on and off the wheelchair to be recharged. Today I am mostly using the vent [non-invasive] at night. This is, of course, next to my cough-assist machine. So much equipment!

By "vent", I mean NIV [non-invasive vent], which goes onto my nose and/or mouth with a mask. I use a Bi-PAP at night, which is similar to the C-PAP that people use for sleep apnea. My "vent" is also a NIV. This is not to be confused with a tracheostomy and mechanical ventilation, which some patients opt for, when NIV no longer works. This is considered life-support and is a big decision. Stephen Hawking is on mechanical ventilation. In pictures of the famous physicist, you can see the tracheostomy tube coming from his throat. Most people who opt for this, have a ton of money to pay for care, which is not covered by Medicaid or most insurance plans. A patient on mechanical ventilation needs either trained nurses and/or trained family caregivers to be present all the time, because the patient can never be alone. In the absence of that, the patient must live in a nursing home. Since I refuse to live out my life in a nursing home, I have a health-care proxy that instructs that I am not to be trached and mechanically-vented. There are many people I keep in touch with, on mechanical ventilation, most of whom have a spouse who does most of the care, and nurses to fill in, even children who can do the job. Many of them run fund-raisers throughout the year to raise the money to pay the bills. With stem-cell research being much more on the horizon, a cure or improved treatment is more imminent, so they want to go on as long as they can. As for the patients I correspond with in nursing homes, they are not happy. They say the staff doesn't understand ALS, are especially mean to patients who can't speak, and are especially isolated because their friends and relatives are uncomfortable visiting nursing homes. From my understanding, good nursing homes with compassionate staff are few and far between. I even correspond with a patient in a nursing home where the staff never brushes his teeth. For Christmas, all he wanted was someone to brush his teeth, so a friend came over to do just that.

On the other side of the spectrum, I know of a man in Manhattan who is on mechanical ventilation and lives with his wife and a live-in aide [paid privately]. He has a push chair, because he can't use his hands anymore, and so he can't drive a motorized wheelchair. Every day he goes out -- to the park, to a movie about twice a week, out and about, etc. Every situation is different. In his case, he wrote a book totally using a computer that works with eyebrow movement, because his eyebrow is the only thing he can move. He uses the book sales [the book is called "Not in Kansas Anymore"] to raise funds for his care. He is the epitomy of strength and resilience. Most people with ALS will tell you that before their diagnosis they would have said "I'd rather be dead than live like_____." You can fill in the blank with any scenario/phase of ALS. For me, it could have been "I'd rather be dead than not be able to wash my hair three times a week/take a shower daily/not be able to go to the beach/not be able to drive, etc. etc. BUT when you get to each stage, you adjust, you accept, you are happy to be here.

Some Thing That Make Me Sad; Some Things That Make Me Glad

2009-03-21T12:06:00.006-04:00

ferncohen.com
I am very sad about a couple of things this week. First, I am really sad about the death of Natasha Richardson. It was so quick, so senseless, so arbitrary, so unprovoked. It is a reminder, once again, that life is so fragile and so precious. You can be fine one minute, and dead the next. They called it "talk and die" syndrome. One minute you're fine, talking, walking, refusing medical help, and suddenly, [could be a few hours or minutes later], you're vomiting, you have a severe headache, and may even collapse. Very scary, and very sad. The news reports that I heard, said that impact on either side of the head is more dangerous than impact to the front or back of the head. Hitting the side of the head can actually knock the brain around, and cause blood to collect in a hematoma. I thought back to how many times I have fallen, especially in the early stages of my ALS, knocked my head, and felt just fine afterwards. I think we can all look back and recollect an incident like this.

I am also sad that our sensitive and ultra-conscious president found it so easy to make an politically-incorrect comment on the Tonight Show yesterday. He was actually making fun of his bowling, and said it was like the Special Olympics. His staff called the Special Olympics to apologize even before the show aired. We are all so aware of racial and ethnic slurs, but slurs against people with disabilities still roll off our tongues so easily. I am also guilty of blurting out words like "retarded", "lame", and, ironically, "spastic". This is ironic because "spasticity" [stiffness] is my most troubling symptom.

And here's the thing that makes me really sad [and mad too]: after a huge mess last year, where my bills fell behind, through no fault of my own, I have been really on top of things, and my bills have been meticulously up-to-date. But apparently, my fax machine stopped working properly, and the pooled-income trust received faxes from me that came in all black. They knew it was from me, and neglected to contact me to tell me. If I didn't notice that my balances online showed that the bills hadn't been paid two weeks after I faxed hem, I never would have known. When I called to find out why my bills hadn't been paid, and asked why nobody called to tell me there was a problem with my faxes, I got the most ridiculous answer: "We didn't have your number". I found this unacceptable since they have a whole file on me. I had to give them all to a friend to fax from the office, but the phone calls are coming in already, and I'm embarrassed. And the thing is that nobody has the least bit of compassion when I tell them that the bills are paid through a trust. They probably think I am some rich trust-fund baby, when nothing can be further from the truth! So, late fees are coming my way. In order to let the NYSARC trust know how damaging this was, I will have to send a letter, because nobody was willing to call and make the noise over the phone. Needless to say, I had to shell out money for a new fax. Oh well. In the scheme of things, I guess this is a minor rant.

But here's something that I found really sad, and I hope my feedback helped her [she said it did]. I met a woman Tuesday night whose brother has ALS. She's in the city and he is on Long Island. She hasn't seen him in a year. She can get to him-- that's not the problem. He is extremely depressed and stays in bed in the upstairs of his house. His wife is installing a stair lift for him in the hope that he will go downstairs. The sister I met says that when she calls on the phone, they don't want to talk about ALS. So she says that she sees nothing they can talk about, so there is no reason to visit him. I told her that it is probably depressing him further that his own sister will not come to see him, and why do they have to talk about ALS? I reminded her that there is still an intelligent person inside. So she said "well I can't tell him about anybody else's life, because it will upset him by reminding him of what he can't do anymore. I can't talk to him about politics, because none of that is relevant to him anymore. Same with the arts." I suggested they watch TV or a movie. She was concerned that the media was not relevant to him anymore. I told her this saddened me because he is not his disease, he can still live, and be entertained, and laugh. She said I helped her, that she will go see her brother and try to get him out of bed, or at least watching TV, or read to him. I don't know why people think PALS are not people anymore, that the only subject that interests us is our disease. When I see people, aside from explaining a few things they need to know, I don't want to talk about my ALS. And when I don't hear about their lives, it distances me further. I have people I was very close to, that I either never hear from anymore, or if I do, tell me nothing about their lives anymore. Because of this, I don't feel attached to people I felt a closeness to, before ALS. Or maybe it's a way for them to break the attachment, either purposely or subconsciously. I don't know. What I do know is that many people who were a big part of my life, are not in my life anymore. I'm told serious illness can bring them closer or further apart. I'm happy to say that, in most cases I know, it brings people closer.

I am happy that my friend Andrea is coming today, and I can ask her to help me with some things that have been hanging -- a new rug for my bunny's cage, a package that has to be sent from the post office, pictures to be hung, etc. And Judy is coming for our weekly Starbucks outing. I am also happy about my physical therapy, which started yesterday as an outpatient. The PT is trying to strengthen my stomach, and loosen up my legs. So far, it's the closest thing to a gym workout I can have. I hope to burn some calories.

Stem Cells, Iplex, Jane Fonda as PALS on stage

2009-03-14T11:42:00.008-04:00

The biggest news is President Obama's overturning of the 2001 Bush restrictions on stem-cell research. This action will open about 1,000 stem-cell lines. It's important to know that cures and treatments for disease will not come overnight, but the opening of lines will increase the investigation and research. For more information

Here is a link to a good article

And an article on stem cells and cancer

A clinical trial for patients with rapidly-progressing familial ALS, has begun enrollment at Emory University. The study uses the drug arimoclomol. go to this link,

Louise took me to see a new Broadway play called "33 Variations" starring Jane Fonda as a musicologist who has been diagnosed with ALS. ALSA had consulted with the cast, so the progression from clumsy walk to cane to walker to wheelchair, and finally to deathbed, was reasonably accurate. Parts of the play were weak, but Jane Fonda's performance was stellar. She hadn't been on the stage in 46 years and, at 71, is not likely to be there again. So it was a privilege to be able to see her

The FDA has decided to allow a few patients with ALS access to mecasermin rinfabate [Iplex] under "compassionate use" rules. Iplex is a blend of recombinant insulin-like growth factor-1 [IGF-1] and IGF binding protein-3, which was pulled from the market when Insmed [the drug's manufacturer] lost a patent dispute with companies that make a similar drug to treat stunted growth in children. Insmed only has a small quantity of the drug remaining.

For more information, go to this link

2009-03-14T11:40:00.000-04:00
ferncohen.com

African-Americans Needed to Help Save a Life of NYC child

2009-03-07T07:58:00.002-05:00
ferncohen.com
African-Americans are desperately needed today for a bone-marrow screening to help save the life of a six-year-old in Greenwich Village today [Saturday] Go here for details

Community Choice Act (CCA) is the mos...

2009-03-06T13:56:00.002-05:00

Community Choice Act (CCA) is the most important health care reform bill for people with disabilities and seniors. Simply put, it will give people with disabilities and seniors in nursing homes and other institutions, or folks who are at risk of such placement, the choice to live at home with the services and supports that they need to stay in their communities independently.
Become an initial Community Choice Act co-sponsor! Write to your Senators and Representatives in the House:
If you don't know who your senator or representative is, click here
Dear [recipient name inserted here],
I am contacting you today to ask that you take action on a critical issue:
The institutional bias of long term care.

I am sure you are aware that seniors and people with disabilities Overwhelmingly prefer to live in the community with supports rather than Receive assistance in a nursing facility or other institution.
Unfortunately, the current system does not give people a choice and often requires that people go into a nursing facility or other institution to get the assistance they need. In fact the vast majority of our Medicaid Funding for long term care is earmarked for expensive institutional settings, rather than supporting people at home in the community.
The Community Choice Act (S799 in the 110th Congress) changes this by establishing a national program of community-based attendant services and supports for people with disabilities, regardless of age or disability.
This bill would allow the dollars to follow the person, and allow eligible Individuals, or their representatives, to choose where they would receive services and supports. Any individual who is entitled to nursing home or other institutional services will now be able to choose where and how these services are provided.
This legislation is supported by every national organization representing
people with disabilities.
Your support of the Community Choice Act is extremely important. This
legislation is about individual choice and allows an individual to choose
to receive care in the community, rather than be forced into an institutional setting. Please give seniors and people with disabilities a Real choice in long term care.

Sincerely,
Name

Community Choice Act (CCA) is the mos...

2009-03-06T13:13:00.000-05:00
All boomers should care deeply about this! Disabled and elderly people should have the choice to stay in their own homes, to "age in place"

Community Choice Act (CCA) is the most important health care reform bill for people with
disabilities and seniors. Simply put, it will give people with disabilities and seniors in
nursing homes and other institutions, or folks who are at risk of such placement, the choice to live at home with the services and supports that they need to stay in their communities independently.

Become an initial Community Choice Act co-sponsor! Write to your Senators and Representatives in the House:
If you do not know who your Senator or Representatives are, click here

Dear [recipient name inserted here],
I am contacting you today to ask that you take action on a critical issue: The institutional bias of long term care.
I am sure you are aware that seniors and people with disabilities Overwhelmingly prefer to live in the community with supports rather than Receive assistance in a nursing facility or other institution.
Unfortunately, the current system does not give people a choice and often requires that people go into a nursing facility or other institution to get the assistance they need. In fact the vast majority of our Medicaid Funding for long term care is earmarked for expensive institutional settings, rather than supporting people at home in the community.
The Community Choice Act (S799 in the 110th Congress) changes this by establishing a national program of community-based attendant services and supports for people with disabilities, regardless of age or disability.

This bill would allow the dollars to follow the person, and allow eligible Individuals, or their representatives, to choose where they would receive services and supports. Any individual who is entitled to nursing home or other institutional services will now be able to choose where and how these services are provided.

This legislation is supported by every national organization representing people with disabilities.
Your support of the Community Choice Act is extremely important.
This legislation is about individual choice and allows an individual to choose to receive care in the community, rather than be forced into an institutional setting. Please give seniors and people with disabilities a Real choice in long term care.
Sincerely,

Name

Jane Fonda Plays an ALS Patient on Broadway in "33 Variations"

2009-03-06T10:39:00.002-05:00
ferncohen.com
There is a new play on Broadway called "33 Variations", starring Jane Fonda as a musicologist who has been diagnosed with ALS/Lou Gehrig's Disease. I don't know too much about it, but I have plans to see it next week [with Louise, who works with Actors Equity]. I am anxious to see if they present the disease accurately, as well as how the character deals with the changes. I know that the ALS Association consulted with the cast, so an attempt was made at some authenticity. You can read an entry in Jane Fonda's blog about her thoughts regarding the role at this link.

New Memoir Article: How My Bi-Coastal Move Made Me Miss the Oscars

2009-03-03T10:18:00.000-05:00
How a Move Between New York and California Made Me Miss the Academy Awards
A move to Los Angeles from New York in my youth was a bigger adjustment than I bargained for, even the three-hour time difference.
http://www.associatedcontent.comarticle/1499426/how_a_move_between_new_york_and_california.html

New Memoir Story: How a Bi-Coastal Move Made Me Miss the Oscars

2009-03-03T10:13:00.001-05:00
ferncohen.com
How a Move Between New York and California Made Me Miss the Academy Awards
A move to Los Angeles from New York in my youth was a bigger adjustment than I bargained for, even the three-hour time difference.
http://www.associatedcontent.comarticle/1499426/how_a_move_between_new_york_and_california.html

8 Harsh Truths to Improve Your Life [courtesy of "dumb little man"

2009-02-27T07:58:00.000-05:00
As boomers, we can look back and believe in the old saying "Youth is wasted on the young". If only we knew, and accepted -- no, embraced -- these 8 truths, we could have thrown off a lot of anger, depression, and feelings of being "stuck". Let me know what you think, or if you have any "harsh truths" to add to the list.

8 Harsh Truths to Improve Your Life-- Courtesy of [not so] Dumb Little Man

2009-02-27T07:41:00.004-05:00
ferncohen.com

I am not preaching here by any means! Click here to see the eight truths I wish I had accepted all my life. I've had to accept these truths since ALS, but I wish it didn't take ALS to wake me up! The sooner you can accept these, the better off you'll be. If I had embraced them sooner, I could have bypassed a lot of anger and, thus, depression [which is really anger redirected at yourself]. I would be interested in feedback, either privately or in comments. Do you agree with these? Has any of these impacted you personally, as they have impacted me? And, do you have any truths to add to this list?

Random Thoughts Feb 14, 2009

2009-02-14T09:55:00.002-05:00
ferncohen.com

As each stage of this disease comes about, I find myself adjusting to a "new normal". For reasons of hygiene, I have to be woken up by the night aide at 6:00am, to do some personal care. This means less time sleeping in my bed on the bi-pap vent. So, I need to nap later in the morning with the bi-pap on. Actually my doctor wants me to use the bi-pap more during the day. I have been resistant, because I know that needing the bi-pap more than sleeptime means the disease is progressing. But the reality is that the circles and puffiness around my eyes are due to insufficient oxygen.

And I have been perfect in monitoring my medication, except for yesterday. I didn't realize I had run out of Baclofen, and could not take it last night or this morning. I am reading that the withdrawal can be wicked and even dangerous, so I am biting the bullet until the pharmacy opens in about 90 minutes. In the meantime, I tossed and turned last night and felt feverish; that is from the withdrawal.

I am accustomed to giving the aides the television remote, but yesterday I had a rare opportunity to watch an IFC movie. It was a Japanese movie called "Nobody Knows" about a mom who abandons her children to fend for themselves. If there was ever a movie to kick up abandonment issues, this was it. I was bawling! And then at night I watched the special Diane Sawyer edition of "20/20" about Appalachia. More bawling. I am realizing that I am hurting and sad, and these two shows served as catharsis for me.

I had to put this blog on a site where I could monitor comments. I discovered way too late an embarrassing comment on my other site by someone who needed to get out some frustration I can't show all happiness and positivity all the time. I have to deal with most things by email or using relay calling. Just addressing an envelope can take a lot out of me. It's the little things that frustrate me sometimes. I always believed in presenting the hardships as well as the joys and blessings. If it gets too hard to read, you don't have to read it. I have no choice but to live it.

On Monday, I realized I had no dial tone on my phone. Verizon kept putting me through all kinds of troubleshooting hoops. When they suggested I do some kind of test on my jack, I knew this was beyond all realistic expectations. I also knew I had nobody coming to visit in the near future who could do this. So I sent off an email and I very politely told them that I am disabled and wheelchair-bound, so getting down on the floor was not an option. On Thursday, a repairman came out to repair it. On my weekly foray into the bathroom [the only time I go in there], I must have severed the cord with the wheelchair. The Verizon engineer needed to rewire and put the cord up higher. But I was more than three days without a house phone.

I appreciate when people are sensitive to my feelings, but wish everybody didn't walk on eggshells around me. Some of the people I used to be closest to, I don't know anymore. Some people tell me nothing about what is going on in their lives. Are they afraid if they tell me the good stuff I will be jealous? Are they afraid the bad stuff will upset me, or that I won't be empathetic? I have had a few people recently tell me why they are angry with me. Truth sometimes hurts, but in the end it helped me to understand that other people probably feel that way and won't tell me. It's like the 800 pound gorilla in the room. I've made mistakes along the way, but some of the very people who cheered me on later told me off. I was too truthful and too transparent. I hung onto every promise, every word people said. I wish some day that people will know what to say and what to do around people who have chronic [terminal] illness.

Research Update February 12,2009

2009-02-12T10:47:00.003-05:00
ferncohen.com

Lou Gehrig's Disease In Humans Genetically Linked To Dog Disease for more info, go to this article
Disclaimer: this DOES NOT MEAN you can get ALS from dogs! Just that studying the disease in one species can give us clues to the disease in the other species. Please do not make plans to drop little Fido off at the shelter!

Clinical Trial of Stem Cells for Spinal Cord Injury Cleared by FDA
The FDA has cleared the way for the first clinical trial of a human embryonic stem cell-based therapy, one that is aimed at remyelinating injured spinal cords, For more click here

Recent drug trials came out with less-than-encouraging news. Iplex, a drug tried in Italy with a small sample of patients, proved ineffective. Lithium, which I tried for a about a week, but stopped because it made me feel worse, proved not only ineffective, but damaging to some patients. For more information on those two drugs, and their trials with ALS patients in the US, see the full article

ALSTDI [ALS Therapy Development Institute] scientists are studying motor neuron "neighboring" cells called astrocytes and glia. They have reason to believe that studying only motor neurons as a path to ALS treatment has not been sufficient. Studies of astrocytes, glia, and even the muscles themselves might be a more successful way to find better treatments. For more on this, go to the full article

PEG Tubes - Myths and Facts

2009-02-11T10:54:00.000-05:00
PEG Tubes - Myths and Facts

ferncohen.com

Alan Rosenberg on His Visit to Rego Park

2009-02-06T08:25:00.002-05:00
ferncohen.com
Click the link above for a very interesting blog by Alan Rosenberg, who came to buy some of my craft supplies recently. It's an interesting perspective from someone who lives in Manhattan, and who would probably never come to Central Queens, except by chance. Well, chance brought him here a little earlier than expected, and he was fascinated by the architecture [great pictures] and the Uzbeki culture.

I Bet Obama's Had to Hire a White House Chinese Chef

2009-01-29T19:26:00.000-05:00
Hey,
this was an email I received today from my former Assistant Principal Marc Saltzman:

WHITE HOUSE STAFF FOR OBAMA & BIDEN

So far we have:

Rahm Emanuel - Chief of Staff - Jewish

David Axelrod - Senior Advisor to the President - Jewish

Ronald Klain - Chief of Staff to the Vice President of the United States - Jewish

Larry Summers - Economic Advisor to the President - Jewish

Paul Volcker - Economic Advisor to the President, Former Head of Fed Reserve - Jewish

Tim Geithner - Treasury Secretary - Jewish [we are not sure about this one]

Peter Orszag - Head of Budget - Jewish

Have you noticed that Obama and Biden are not so much assembling staff, as gathering a minyan?

What does everyone think? Should they scout out the best Chinese takeout for cabinet meetings, or would it more efficient for Obama to hire a Chinese chef for the White House? I vote for the latter, because in the long run, they will be eating so much Chinese food, they might as well wok it up in-house!

Update January 29, 2009

2009-01-29T17:03:00.001-05:00
ferncohen.com
Did anyone watch the new TV show "Homeland Security" the other night? At the end, they had a story about one of the Customs and Border Patrol agents who had to stop working up in Buffalo because he was diagnosed with ALS, and they showed a huge fundraiser they had for Jay. I had seen a request for donations for Jay on Facebook too. This was more exposure on national television for ALS.

A couple I know -- the husband has ALS -- has been resisting the PEG feeding tube. Now, he isn't eating enough because it's too exhausting for him, and it already takes him two hours to eat whatever he is eating. They are thinking about the feeding tube now. The problem is that he is so progressed that his breathing is weak, which makes it more risky to do the procedure. This scares them, although there are certain accommodations that can be made. I was advised early on to get the PEG tube even before I needed it, as I was advised about getting equipment before I needed that too. So I got my PEG in 2005 way before I needed it. I got good advice, and I'm glad I followed it.

One piece of advice I didn't follow was to put on my Bi-PAP for a few hours during the day, especially for naps. I started doing that this week, and I must say it makes a nice difference. When I use it, I am less likely to doze off during late morning, and it gives me a little more energy. I guess I was resistant because I keep hearing that right before the end of life, PALS [people with ALS] are wearing the Bi-PAP 24/7, and when that fails to help, they have to make that all-important decision of whether or not to get the tracheostomy and go on mechanical ventilation. So I viewed use of the Bi-PAP for anything over and above overnight sleep time as a step closer to the end. But, in reality, I have only been sleeping about 6 or 7 hours, and should really use the Bi-PAP more hours anyway. And, sitting around wheezing and/or short-of-breath because I was resisting the Bi-PAP was a stupid and uncomfortable option. My seatbelt was busted for several weeks, and finally repaired yesterday. While the mechanic was here, I asked him to adjust the footrests so they don't keep falling down.

A little advice about credit cards and loans. Several months ago, I negotiated with one of my credit cards to take my old debt and pay a lump sum less than the balance, and get rid of the card. Well, they graciously let my bank know, and the bank cut down my credit limit on my overdraft coverage [for which I was never delinquent, by the way]. I don't really care because I planned earlier last year to never again use the overdraft coverage and pay it down. However, I learned that when you are delinquent on one debt, they can inform your other creditors, even if you have had a pristine history with all your other creditors. So know that these credit card companies are getting very devious in this recession!

The VA has listed ALS as a presumptively compensable illness, meaning there may be an association between it and military service. This is an issue that was the topic of ALSA advocacy last year in Washington DC, so bravo for ALSA.

Let's Hear it for Boomer Hero US Airways Pilot

2009-01-16T11:13:00.000-05:00

On Metroblogging NYC I pay homage to a "mature" boomer pilot who was the real hero in the "miracle on the Hudson" yesterday. Click this link!

US Airways "Hero" Pilot-- Let's Hear it for a Mature Professional!

2009-01-16T11:04:00.004-05:00

ferncohen.com
In a time of most industries, especially airlines, throwing mature [read higher-paid] employees to pasture, read my tribute to the hero pilot of yesterday's "miracle on the Hudson" Click the above title-link

First Neurons Created From ALS Patients

2009-01-15T14:21:00.002-05:00
ferncohen.com
Although Obama promised to lift the 7-year ban on embryonic stem-cell research, it almost doesn't matter. Scientists have found a way to make stem cells from the skin cells of ALS patients. Click on the link above to read more.

Everyone Needs Emotional Safety

2009-01-14T11:36:00.001-05:00
ferncohen.com
By now, everyone is familiar with the proposed subway, bus, and railroad fare hikes by the MTA. But did you know they are also planning to double Access-a-Ride paratransit fares too? This is crazy because most disabled people are below the poverty line, and are the most underemployed segment of the population. So, if this fare ike goes through, a round-trip of $4.00 will now be $8! This is a lot of money to some disabled and/or elderly people, and will force a lot of paratransit into isolation and house-boundedness because they won't be able to afford to go anywhere. But Manhattan Borough President Scott Stringer is earnestly fighting this, alongside Senior Citizen and Disabled advocacy groups. Let's hope his efforts are successful. Stringer has been holding hearings and town hall meetings on the subject.
A fare hike on paratransit will be a hardship on clients, myself included.

Everybody needs a safe place to let off steam and vent, without being judged or preached to. And everybody needs a place where they can express disappointments and heartbreaks, and - yes- even anger, without friends and loved ones getting all sensitive thinking they recognize themselves, and either getting on the defensive, or getting all angry and preachy and coming back with scolds like "you know, there are people worse-off who don't complain" or other criticisms. Worse yet are the ones who preach "you should keep a gratitude journal" or "you should find something positive". Everybody, sick or healthy, has the right to some anger as long as it is vented in a healthy way. The definition of "depression" is "anger directed within" or anger "held in". Many people who suffer from depression are people who never seem to get angry. However, I am reminded once again that everybody has to find out where, and to whom it is "safe" to let out true feelings, and often it is only to people who have been through, or are going through, the same experience. Anyway, we know there are people worse off than we are, we do think about positive things, we are grateful for what we have, etc etc. I for one, don't sit around in a constant state of outrage. But I've decided to take some of the raw emotion and express it privately, in safer places. I have found out that a blog is not safe at all. And a difficult lesson I had to learn was: sometimes the very people who encourage with "You go girl!" and "we love your feistiness" are the very ones who turn on you later, saying "you're just too angry". I had a former neighbor who was also a close friend, end our association last month for this reason. Here was a person who was most supportive and encouraging. Now the friendship is over. I will never trust anyone again who tells me "You go, girl!". And of course I begin to wonder "is she just able to verbalize what everyone else is thinking?" She claimed in her comment that people weren't coming around anymore because of my "attitude". Maybe this ex-friend just spoke the truth, and once I got over the shock and hurt, I was actually grateful. I remembered that saying about the truth setting you free, etc etc. So true!

One thing I have learned is how unimportant it is to accumulate "things" that are no longer useful to me. Dust is an issue for my breathing, and the aides are not obligated to do more than light housework. I was shocked when one of the aides swept under my bed and behind my microwave and pulled out dust balls the size of animals! The aides are not supposed to do heavy cleaning, so I can't force them to do this. When they do, it's a bonus. So I think I will have to hire a cleaning person at least once a month to move furniture and do heavy cleaning, OR pay one of the aides extra to do a twice-monthly deeper cleaning. This week I also donated my remaining craft supplies and stereo/boom box that hasn't been used and has been collecting dust to the Brooklyn Center for Independence of the Disabled [BCID]. It felt great! I need to unload some books -- a very hard thing for me to do -- which are some of the worst dust-collectors! But, on the other hand, nobody can really appreciate the pain of getting rid of these things. It's like watching parts of me die, because it's an admission that I no longer need these things because of the things I will never do again. List go around in my head-- I will never again: go on a date, do crafts, go to a gym, travel, go to a concert or live theater, etc. These are things disabled people can do, but I can't do because of my circumstances of being alone. So every time I look at something at home and say "I haven't worn that, or used that in 4 years, and probably won't again", it's a part of my life dying.

I am kind of cocooning for the winter. I am afraid of getting a serious infection so I am taking care. I actually received an invite, through a disabled organization, to attend one of the inauguration parties. But without a hotel room and a ticket to the Inauguration, it really becomes impossible. Hopefully in May, I can go to Washington with ALSA? I really want to be involved in activism and make a difference.

I Usually Don't Make Resolutions, But...

2009-01-02T08:35:00.004-05:00
ferncohen.com
Call it a resolution if you must, but what I would like to do in 2009 is to repair relationships that have been suffering, especially if my attitudes and actions contributed to the damage. It will involve forgiveness on my part, listening to others, and putting myself out to initiate contact in some cases. I would also like to stop finding fault with those who are in my life, especially people who are there for me.

Yesterday I used relay calling to wish family and friends a happy new year. Unless you listen to the operator, it sounds like a sales call, so people sometimes hang up on the operator. But it's the closest thing I can have to a telephone conversation. I type, the operator reads what I type, and the other person talks, and the operator types what the other person says. The advantage over instant messaging or email is that you don't have to wait until the person is online, and the other person can feel like he is having a real phone conversation, even though there are slight delays [although those operators are fast, and I can type while the other person is talking, so it flows nicely]. It's mostly the older people who don't "get it" at first.

I have always found that, when I am in a funk, it helps to call, email, or write to someone I have not had contact with in a long time. Also, this morning I did something I don't do often enough, and will try to do more: I thanked Lynette dor taking such good care of me and cleaning up my pukey messes yesterday.

Happy New Year 2009

2009-01-01T17:14:00.003-05:00
ferncohen.com

I'm hoping 2009 is better because 2008 didn't end on the best note. Haley walked the dog in the very early morning Christmas Eve Day, and slipped on the ice. She ended up in the hospital for 3 days over Christmas with a huge gash in her head, and a concussion. Christmas for the Albertarios was not great, to say the least! And Haley is suffering from headaches. I hope she feels better soon.

I woke up on Monday with what seemed like a raging cold. By Wednesday [New Years' Eve], I had full-blown stomach flu. My aides are my unsung heroes, cleaning up after me. As I write this, I am starting to take in a little solid food at a time. But yesterday, I could have nothing but clear liquids. I still feel crappy, and really weak. When Lynette came on duty last night, she ran out to buy me some Pepto Bismol, which gave me some relief. But, instead of welcoming the new year at Nancy's annual party, we stayed home.

Home! I am really depressed looking at this cluttered, dark, rundown place. Years ago, my dad asked me to move into his house, but I thought it would be isolating. Well, there could be nothing more isolating than a studio apartment in Queens, with no sun exposure, and cluttered up with junk. Paradoxically, I probably should have given up some of my "independence" and been around family. But who knew? And it might have upset my dad way too much!

I have been suffering a certain malaise the last couple of weeks. I have some wonderful people in my life, who sent me some outrageous gifts!! But yet, I am sinking into feelings of hopelessness and uselessness. I'm not optimistic about the research and in the back of my mind I am deathly afraid that this is more than the stomach flu, but the final blow that will kill me. I look at my Chelsea and worry what will happen if something happens to me, even though she will go back to the rescue and will be in excellent hands. She is so attached to me.

I haven't been this scared in a very long time.

I Helped Someone! YAY!! Access-a-Ride [almost] Going to LI

2008-12-19T21:57:00.003-05:00
ferncohen.com
The other night I was at the ALS meeting/holiday party at Beth Israel and I was approached by the mother of a patient who still works as a physician [and the mom goes with her]. Well, they say that they learned from my blog about the accessible taxi dispatch program, and tried it because their wheelchair van is in repair. They were pleased with the service on the first leg. The second leg there wasn't a taxi available in time, so I think they took the bus, because they didn't want to wait too long. But it's nice to know that I helped someone through this blog.

Also, Access-a-Ride is going over the Nassau and Westchester border 3/4 mile to Great Neck, Atlantic Beach, N. Hyde Park, etc....so there are more options! But DNNYC is fighting the fare-doubling promised by the MTA.

Saying From a Bunny Parent -- So True!

2008-12-13T10:17:00.001-05:00
There comes a point in your life when you realize
who matters,
who never did,
who won't anymore...
and who always will.
So, don't worry about people from your past,
there's a reason why they didn't make it to your future.

Senior Tour With No Accessibility -- Duh?

2008-12-10T15:45:00.004-05:00
ferncohen.com
This is an email I received today from my friend Lora Frish:

This morning, December 10,
I went on a tour of Gracie Mansion with other
elderly people from the Van Cortlandt Senior Center. There was one
person with a walker and several with canes. The tour was on two
floors, but the elevator was unavailable. The people who couldn't
climb the stairs had to wait in chairs on the first floor for the rest
of us to finish the tour. The elevator should be available for tours.

D-u-u-h-h???? A bunch of seniors are coming......Now, should the senior center pre-arranged by inquiring at the time of booking? I don't know the level of expertise and experience of whoever arranged this tour, but someone at Gracie Mansion, upon hearing a bunch of seniors were coming, might have made the elevator available?

Word to the wise for anyone reading this who may be in a position now or in the future, to arrange events for seniors and/or disabled. Check on accessibility.

Is "Gay" the New "Black"?

2008-12-08T08:59:00.000-05:00
Can the Proposition 8 struggle in California really be compared to the civil rights struggles in the 1960s. Read this article from an LA Times blog, which asks the question.

Accessible Taxi Dispatch Program Needs Users

2008-12-04T17:07:00.003-05:00

ferncohen.com
Almost two decades ago, disability advocates went to then-Mayor of New York City, Edward Koch, to obtain his support for the proposed program to make New York City's public bus system wheelchair-accessible. To everybody's astonishment, Mayor Koch, who had a legacy of liberalism and progressivism, was not supportive. The reason Mayor Koch objected to the accessible-bus program, which would equip each bus with a motorized wheelchair lift, was not because the mayor was not sympathetic toward people with disabilities [PWDs]. He objected to the costly modifications because he believed PWDs would not use the accessible buses, and the expense would be for naught. Moreover, he was afraid that able-bodied riders would object to the extra time spent to get a PWD boarded, and would resent the new system, and the PWDs.lifts ta Koch feared the resulting backlash of able-bodied riders venting anger toward PWDs would be counter-productive, and cause increased alienation and isolation of PWDs.

Several years later, Ed Koch had to admit that he had been mistaken. The accessible-bus program became a success. Today, every MTA New York City bus is equipped with a motorized ramp. It takes very little extra time to board a wheelchair, and the able-bodied riders rarely exhibit annoyance. As a PWD myself, I am amazed at how efficient this system is. At the beginning, I understand there were growing pains -- broken lifts, or bus drivers who claimed their lifts were broken out of laziness or resistance -- often leaving PWDs in wheelchairs waiting for several buses. But I have had nothing but efficiency and friendly, gracious bus drivers.

Now, there is a new program in place. New York City has an ever-growing fleet of wheelchair-ramp-equipped taxis, pictured at this link PWD advocacy groups are trying to get more fleet owners on board to replace old taxis with newer accessible models. Formerly, it was very difficult to find an accessible taxi to hail from the street. But now there is a dispatch program in place. A PWD can now call 3-1-1 and ask for the accessible taxi dispatch. The call will then be routed to an appropriate dispatcher, who will send out a ramp-equipped taxi. According to a statement from the Disabled Network of New York City [DNNYC] this week "Arguments against adding more taxi and livery services for riders with disabilites have long been based on the low numbers of people using existing services. Based on the figures available, taxi and livery drivers assert that providing taxi service to PWD's cannot be profitable. Ridership of PWD's for the recently launched wheelchair accessible taxi project is below projected levels." So, in order to make this accessible-taxi program viable and profitable, PWDs have to make a concerted effort to use the accessible taxis through the new 3-1-1 dispatch system. Eventually, New York City hopes to be like London, England, a city where every taxi is equipped for wheelchairs.To read more about the Accessible Taxi Dispatch Program, click here.

"American Idol" Contestant Will Donate Christmas Song's Proceeds for ALS

2008-12-03T14:44:00.002-05:00

ferncohen.com
Former Idol contestant Michael Johns, will release a new song for the holiday season called "Another Christmas" on iTunes December 9. The proceeds from the song will go toward finding a cure for ALS. Johns' interest in ALS came out of his friendship with "Access Hollywood" host Nancy O'Dell. O'Dell's mom Betty passed away this past June, after losing her battle with ALS.
For the full story, and a chance to listen to a preview of the song, clink on the link on top.

Mad Men: Not the Beaver Cleaver 60s

2008-11-28T12:28:00.000-05:00
Interesting article about my favorite TV show "Mad Men". What do you think? Is its depiction of the 60s accurate? To me, it seems so, although I didn't grow up in the executive-dad world, and my mom was not the wife of a white-collar man. She was a stay-at-home mom and smoked while she was pregnant!

Disappointing Results from IGF-1 Clinical Trial

2008-11-25T21:10:00.003-05:00
ferncohen.com
Subcutaneous (under the skin) delivery of insulin-like growth factor 1 (IGF-1) does not benefit people with ALS at a dose of 0.5 milligrams per kilogram of body weight, according to a large clinical trial whose results were released today.
Click link above for full article
You can make a tax-deductible donation to ALS research through the Fern Cohen Fund of the ALS Association by clicking the link on the sidebar to the left, which will take you directly to the website, where you can donate online. All the money goes to the ALS Association for research and patient services.

Fortune Cookie Chronicles by Jennifer 8. Lee

2008-11-23T15:20:00.000-05:00
Okay, Jennifer 8. Lee [that's apparently her real middle initial], has sort of beaten me to it, but not really. In her book, and companion blog Fortune Cookie Chronicles, she talks at length about the rather bizarre relationship between Jews and Chinese food through her own Chinese experience, but I will be doing it from a Jewish perspective. Anyway, she provides a link to a "Last Supper" parody, where Jesus and his other Jews are eating Chinese food -- very funny-- click here

Stem-Cell Interests Buoyed by Obama Pledge

2008-11-22T18:18:00.002-05:00
ferncohen.com
One of the things Obama pledged to do first when he takes office: lift the government ban on stem-cells! Here is an article about one biotech company pitching in NYC this week!

Co-op Apartment For Sale in Accessible Building in Rego Park

2008-11-20T14:26:00.003-05:00
ferncohen.com
OK, now this is really funny!
I must admit I laughed hysterically when I saw this.
For those of you who just began reading this blog in the last couple of years, here is a little history.
Way back in 2004, while I still served on the Board of Directors of my co-op, I brought up the issue that the door in the basement was very difficult for someone in a wheelchair or using a walker. To make a long story short, I quit the board and began a 21-month-long battle, with the NYC Commission on Human Rights at my side, for an automatic door. There were other things, but we didn't get them, and I didn't feel up to going to court. Because one of the things we didn't get was a ramp into the lobby, all building functions are now held in the basement. Unfortunately, I still have to brave the elements when I wait for Access-a-Ride" because they won't pick up on the side of the building, where I have to exit. At the time I initiated the process, I had no home care, so often I had to wait for another neighbor to come through to open the door for me [risky at night].

Anyway the door is not the best and breaks down a lot, which angers some of the neighbors. Also, by the time the 21 months was over, I had aides to open the door for me, although I am not the only disabled person in the building. There has been some angry backlash from neighbors who feel the co-op should not accommodate me due to expense and the shoddiness of the door. I won't beat a dead horse, but when I saw the following posting in the yahoo group DNNYC [Disabled Network of NYC], I was intrigued. .... It advertises a co-op apartment for sale in Rego Park, and promotes it as good for wheelchairs because the building has automatic door-entry. So I clicked on the link for more information, because I was curious to see where this apartment was, and guess what! I won't tell you; I will let you click on my link to the posting, and then let you click on the link in the posting to see more info on the apartment which was advertised on a list for people with disabilities [PWDs]

Update November 14, 2008

2008-11-14T19:15:00.001-05:00
ferncohen.com
On Sunday, Judy and I took the Q60 bus to 62nd and 2nd Ave. It was really convenient, and we may do it again next Sunday. Thanks to Maddy, Stacey, Toby, Margie and Nancy, I am paid up with the co-op and in a much better position with my credit cards. I made a settlement with Bank of America, and yet they continue to send me bills for the amount they said I didn't owe anymore. I am really concerned about this, and will have to follow up with letters. It just takes so much out of me to make all the phone calls, write the letters, send the emails, etc. I tend to nap a few times a day. I am mostly doing tube feedings to cut down on the exhaustion of eating, and risk of choking. I am trying not to snack at all, so I can drop some weight.

Some minor modifications-- changing to a smaller wall-hung sink, and removal of the hamper -- may allow the shower chair to fit in the bathroom, and might enable me to have a shower more than once a week. And this would cost a lot less than the $7,000 to modify the whole bathroom. I may be able to save a small amount of money towards that every month. Anything for fun or pleasure is not a possibility for a long time. I can't even think about a movie, a meal in a restaurant, a Broadway show, nothing until all my debt is under control, and my credit score improves. I do as many surveys as possible for gift cards, and Amazon gift certificates. But I now must find a teenager in my building that I can pay to come in daily to do the rabbit litter boxes, because that is something the aides find unpleasant and they really aren't supposed to be doing.

I can't even think of participating in any holiday festivities this year, since I can't spend one penny, and have to stop using credit cards. If I don't have the money I can't have it -- period! I must say I'm pretty proud that I can practice such self-denial. But just because one is sick, the creditors don't stop demanding their money, and they won't hesitate to prosecute me either. I have an application for a rent-subsidized handicap-accessible apartment in Astoria, but I doubt anyone will rent to me with such bad credit, so I have to repair it.

For New Yorkers: Help Out Obama's Health Care Plan

2008-11-09T18:45:00.001-05:00
ferncohen.com

So now that Barack Obama has been elected President, let’s help him out and show our support for his plan of healthcare for all!

Attend HealthCare NOW’s rally and march calling for a national Single-Payer health care system. At the rally there will be a Phone-A-Thon supporting HR 676, the United States National Health Insurance Act. Let’s get it passed.

One Nation, One Plan!
Thursday, November 13, 2008
4:00PM - 5:00PM Rally
Corner 42nd & 7th Ave
5:00PM March to GHI 34th St & 9th Ave