Listen to this excerpt from a "Today" show segment. Letty Cottin Pogrebin is a famous feminist and co-founder of Ms. Magazine with Gloria Steinem. She has survived breast cancer. She talks about things to say and things not to say to a sick friend, and has a new book out about the subject. My absolute favorite line when I told a long-time friend that my long road of diagnosis had finally come up with an answer: "Okay, so now that you know what you have, you'll deal with it" and then she followed this up with "you know, they make canes with little stools. I've seen some old people in the neighborhood using them, and they're very cute". I was 48 years old, facing a prognosis of 2-5 years and the last thing I wanted to look like, was a "cute" old lady. It went downhill from there. She followed that act with a set of emails giving me links to wheelchairs and walkers on eBay. Then, when I was dealing with the loss of my teaching career, she dropped off a 16-page article she was required to read for her Education Masters at Queens College. When I looked baffled she said "Here, read the article for me and summarize it. I'm too busy and you have nothing but time on your hands. Besides, it will lift you out of your depression and make you feel useful". I was stunned. The straw that broke the camel's back was when she came waltzing into my apartment one evening through an unlocked apartment door. It had been about five months since I last saw her. She just said "hi" and sat her ass down. My aide was horrified. "Don't you knock?" she asked. My soon-to-be ex-friend replied, "Why? Am I interrupting anything important?" She moved out of the neighborhood to a fancier part of Queens and I never saw her again. But about a year ago, I accidentally sent a blast message to all my Facebook friends, of which she is one. She inboxed me: "It's good to see you're still around. My teaching job is so tiring. I bought a condo in the Bay Club and had the realtor from hell. Bye". I would do anything to have a job to be exhausted by.
There is an ALS patient who publishes a blog. To protect the author's privacy, let's call her Beth. Well, in the course of any disease, you will get desperate enough to do anything sometimes. Although I am following a healthy diet which I blog about in "Meat's No Treat", this is not to cure or improve my ALS. Rather it is to prevent or help other conditions [eg. cancer, hypertension], and to take off excess weight and keep up my immunity. The last is because ALS patients often die of infections they cannot fight off. But Beth started blogging about a Far Eastern "practitioner" who claimed to be able to cure her with some sort of Eastern medicine. So Beth drove halfway across the country with her husband, blogging that when she returned, she would be back to her "former life" before ALS. I kept thinking, "does she really believe that? If it was some miracle cure, wouldn't we all be doing it?" There is a group of people out there who believe the medical profession is "conspiring" to keep us all sick, because they are "in cahoots" with "Big Pharma". I subscribe to the lists of some of these people because they are believers in nutrition and natural medicine, but I don't buy a lot of their philosophies, such as anti-vaccination and avoiding cancer treatments. And I am able to sift out the extremists, like the nut who was emailing me constantly saying he "solved ALS" , until his emails got so weird I told him I would turn the emails over to the police if they didn't stop [they stopped]. Anyway, Beth didn't get cured; instead she ended up in the hospital with some infection [probably from a weakened immune system from the car travel and/or distress at having her dream of a cure shattered]. Moral: there is no cure -- yet, and won't be for a long time. I am keeping myself as stress-free and nutritionally as strong as possible to prevent additional diseases, preserve what I have, and not flirt with any more danger than necessary. Most of all, I want to stay out of any hospital !! There are always charlatans who prey on the desperate and vulnerable. Physicians get no nutrition training in medical school, but they have come up with cures for major diseases, with the cooperation of "Big Pharma". It's big business and profits come before people and compassion, but that's the way it is. There are many diseases that can be prevented by nutrition and avoiding obesity-- eg. type II diabetes and heart disease. But once you get these diseases, the medical profession is the only hope in most cases.
Sunday, April 21, 2013
Wednesday, April 3, 2013
Physical and Occupational Therapy [PT and OT]
With ALS there is a fine line between benefit and fatigue when it comes to exercise. So for a few weeks now, I had been having PT from VNSNY [Visiting Nurse Service of NY]. Now everyone knows I had a terrible problem with VNS' home care and that is why I switched in early 2007 to Concepts of Independence, which is part of the [CD-PAP] Consumer Directed Personal Assistant Plan, which enables consumers to hire, fire and schedule our own aides. I had a lot of trouble because VNS refused to allow my aides to fill in for each other, so every time one of my regular [trusted, trained] aides had to call out, VNS would send an aide from their pool of "fill-ins". This usually meant I would get an aide whom I didn't know and who had no investment in me or my needs. It's very hard to keep training aides when you cannot speak.
Anyway, VNS has good physical therapists, and this time they sent a man who worked with me about five years ago, and a woman whom I hadn't met. The thing with Medicare and PT, is that Medicare will not approve simple stretching and range of motion. The PT is supposed to make the patient stronger and able to be independent -- think recovery from a stroke, orthopedic surgery or accident. Since ALS doesn't get better, it's hard to show recovery or improvement. So just range of motion [ROM] and stretching doesn't fit the bill. There has to be exercise. So the PT worked me out with light weights and pushed me until I felt I was going to drop. Every time after she left, I fell asleep for at least two hours. I was thinking this is a good thing, because in my healthy days, I always felt tired after a good workout. The PT said I needed to build muscle again, and she assured me she knew all about ALS.
I should have known better from this agency's nurse experience many years ago. When I had my home care from them, I had a visiting nurse who kept calling me "lazy" and said I was "playing helpless" because I "didn't want to be independent again". When I asked her if she knew about ALS and that it was degenerative, she said I just wanted to use that as an excuse to have the aide do everything for me. I had said "How much do you about my disease?", she replied "I know all I need to know". What followed was a letter from my dear friend [and fellow ALS sufferer] Norma Steck, to the head of the agency in complaint of that nurse, who came back with a major apology and an attitude change. We had done the paperwork already to switch to self-directed care, so we felt empowered by all that.
I do not feel at all empowered by my new challenge with pain management. Even though the physical therapy supervisor admitted that this new condition was due to the PT working me too hard, my neurologist is suggesting it is all a big coincidence, and tells me to take pain pills. I want to find out what it is exactly, and am considering asking my primary doctor to refer me for an MRI. In the meantime, all PT and OT has been suspended until my June botox treatment [because the most recent botox of last Friday is too soon to ask for PT again. On to see who gives the best deal on glucosamine/chondroitin -- Vitacost, Swanson or Puritan's Pride.
Now onto researching my father's dementia and how we can slow it down. My sister reports that his behavior grows odder and odder and more and more paranoid. I have been putting off getting his cheek swabbed for DNA for my geneology family research. He's so paranoid that he will think I have evil motives for collecting his DNA. I hope we can collect it.
Anyway, VNS has good physical therapists, and this time they sent a man who worked with me about five years ago, and a woman whom I hadn't met. The thing with Medicare and PT, is that Medicare will not approve simple stretching and range of motion. The PT is supposed to make the patient stronger and able to be independent -- think recovery from a stroke, orthopedic surgery or accident. Since ALS doesn't get better, it's hard to show recovery or improvement. So just range of motion [ROM] and stretching doesn't fit the bill. There has to be exercise. So the PT worked me out with light weights and pushed me until I felt I was going to drop. Every time after she left, I fell asleep for at least two hours. I was thinking this is a good thing, because in my healthy days, I always felt tired after a good workout. The PT said I needed to build muscle again, and she assured me she knew all about ALS.
I should have known better from this agency's nurse experience many years ago. When I had my home care from them, I had a visiting nurse who kept calling me "lazy" and said I was "playing helpless" because I "didn't want to be independent again". When I asked her if she knew about ALS and that it was degenerative, she said I just wanted to use that as an excuse to have the aide do everything for me. I had said "How much do you about my disease?", she replied "I know all I need to know". What followed was a letter from my dear friend [and fellow ALS sufferer] Norma Steck, to the head of the agency in complaint of that nurse, who came back with a major apology and an attitude change. We had done the paperwork already to switch to self-directed care, so we felt empowered by all that.
I do not feel at all empowered by my new challenge with pain management. Even though the physical therapy supervisor admitted that this new condition was due to the PT working me too hard, my neurologist is suggesting it is all a big coincidence, and tells me to take pain pills. I want to find out what it is exactly, and am considering asking my primary doctor to refer me for an MRI. In the meantime, all PT and OT has been suspended until my June botox treatment [because the most recent botox of last Friday is too soon to ask for PT again. On to see who gives the best deal on glucosamine/chondroitin -- Vitacost, Swanson or Puritan's Pride.
Now onto researching my father's dementia and how we can slow it down. My sister reports that his behavior grows odder and odder and more and more paranoid. I have been putting off getting his cheek swabbed for DNA for my geneology family research. He's so paranoid that he will think I have evil motives for collecting his DNA. I hope we can collect it.
Thursday, February 14, 2013
Lifetime Disability vs. Acquired Disability
I had a colleague, during my teaching career, who was an African-American lady about ten years younger than I. We went to lunch one day and she stressed the importance of teaching her son -- then two -- about the civil rights movement, which even she was too young to have lived through, much less remember. She said her mom -- who was also an educator -- made it her business to teach Oni and her sister about "the struggles" so she would always appreciate that the opportunities she enjoyed, were not easily come by. As a child, I learned about the Holocaust, which was still fresh in everybody's minds, especially since I was born only ten years after the end of World War II and the liberation of the Nazi concentration camps. There were people in my neighborhood, many of whom were classmates' parents, who had numbers on their forearms from the "camps".
What does this have to do with disabilities? A lot. When I just hung out in groups of ALS patients, we all had one thing in common: the same disease. There are different forms of ALS, sure. Some of us lost our speech, while some of us can speak; I still have use of my hands while some patients don't, and have to use eye-gaze machines to talk, and different switches to operate their wheelchairs - like head controls or even eye controls. I am blessed with a slow progression, while other patients' symptoms progress at a faster rate. But we all have one fundamental thing in common: we had a life before ALS. Although we were diagnosed at different ages, and an increasing number of young people as young as 18-30 are being diagnosed, we all had able-bodied "normal" childhoods, and most of us had several years of adulthood as well. Most of us dated, attended our proms, got married and had children, and had relationships with our families without thinking about how or why.
But as I mix in the larger disabled community -- most often as a consumer board member of Concepts of Independence -- I become acquainted with people who are disabled in a hundred different ways. The one difference that stands out is the dichotomy between those of us with acquired disabilities [like Multiple Sclerosis, ALS or SCI -- spinal chord injuries], and those with disabilities that appeared at birth [like Cerebral Palsy] or in very early childhood [various forms of Muscular Dystrophy and Polio aka Infantile Paralysis]. Some polio survivors were in iron lungs before portable ventilators were invented, and many child polio victims were abandoned by their families and left in institutions.
I met a very remarkable woman at a fundraiser last September. She came with her son who is now in his mid-30s and was diagnosed with a form of Muscular Dystrophy at age three, when his pediatrician noticed he was clumsy and not coordinated the way he should have been at his age. Today, this man is an attorney who works for city government, but not without a mom who fought for his rights every step of the way in a pre-ADA [Americans with Disabilities Act] world. She would not let his elementary school "dump" him in a special education class full of students with mental disabilities and mental retardation. He became the first student in New York City to be "mainstreamed". He graduated college and law school. This mother says "I only did what any mother would have done". Newsflash: I don't think my own mother would have had the strength to be the trailblazer this mother was. And even today, my dad says all the time to me "You can't [do that]".
Anyway, as I said before, this woman is remarkable. But she commented to me at one point in our conversation: "You will never know what it's like to be a disabled child. You are lucky to have had a life before disability". I agree. I will never know what it's like to be bussed to a school over an hour away from home, in a minibus full of kids in wheelchairs who have to be dropped off in different neighborhoods, because there is only one handicap-accessible school in a whole borough. Then again, disabled children today will never know that, either. The post-ADA world is much better in the way of education. Therein lies the comparison to my African-American colleague's son. Children today with disabilities haven't lived through "the struggles" of their predecessors. Neither have I. I never had to deal with as many businesses and buildings that I couldn't enter because of inaccessibility; nor have I had the experience of being stuck on my block because there were no "curb cuts" or even forcibly homebound because I could not get out of my building.
Nor will I ever know what it's like to be shunned by other children, whose mommies pull them away in the playground, as if disabilities were contagious. Not to mention that able-bodied kids are bullied every minute if they are "different" in other ways. Able-bodied children have troubles too, just different ones. And at the last meeting I attended at Concepts, some of my fellow board members were commenting about the new director of the Mayor's Office for People with Disabilities, saying that he wouldn't be as effective as his predecessor, because the predecessor had been blind from birth and the new man in the job, has not been disabled his whole life. The man sitting next to me [who is disabled from birth] then said "There's a big difference between someone who has been disabled his whole life, and someone who hasn't" and the woman sitting next to him [also disabled all her life] nodded her head.
Is it fair to compare situations like this? Sometimes. Like when I watch those infomercials from St. Jude's Children's Hospital where Marlo Thomas introduces us to babies and little children going through cancer treatments, I think "There's nothing worse than this, especially if they die. There is no loss worse than watching a child suffering and then burying a child". And yes, having a disabled child is the toughest, especially before ADA. It doesn't mean I can't be effective as a spokesperson. And should it have been a criterion when choosing the MOPD director, that the successful candidate be disabled from birth or childhood, in order to empathize?
What does this have to do with disabilities? A lot. When I just hung out in groups of ALS patients, we all had one thing in common: the same disease. There are different forms of ALS, sure. Some of us lost our speech, while some of us can speak; I still have use of my hands while some patients don't, and have to use eye-gaze machines to talk, and different switches to operate their wheelchairs - like head controls or even eye controls. I am blessed with a slow progression, while other patients' symptoms progress at a faster rate. But we all have one fundamental thing in common: we had a life before ALS. Although we were diagnosed at different ages, and an increasing number of young people as young as 18-30 are being diagnosed, we all had able-bodied "normal" childhoods, and most of us had several years of adulthood as well. Most of us dated, attended our proms, got married and had children, and had relationships with our families without thinking about how or why.
But as I mix in the larger disabled community -- most often as a consumer board member of Concepts of Independence -- I become acquainted with people who are disabled in a hundred different ways. The one difference that stands out is the dichotomy between those of us with acquired disabilities [like Multiple Sclerosis, ALS or SCI -- spinal chord injuries], and those with disabilities that appeared at birth [like Cerebral Palsy] or in very early childhood [various forms of Muscular Dystrophy and Polio aka Infantile Paralysis]. Some polio survivors were in iron lungs before portable ventilators were invented, and many child polio victims were abandoned by their families and left in institutions.
I met a very remarkable woman at a fundraiser last September. She came with her son who is now in his mid-30s and was diagnosed with a form of Muscular Dystrophy at age three, when his pediatrician noticed he was clumsy and not coordinated the way he should have been at his age. Today, this man is an attorney who works for city government, but not without a mom who fought for his rights every step of the way in a pre-ADA [Americans with Disabilities Act] world. She would not let his elementary school "dump" him in a special education class full of students with mental disabilities and mental retardation. He became the first student in New York City to be "mainstreamed". He graduated college and law school. This mother says "I only did what any mother would have done". Newsflash: I don't think my own mother would have had the strength to be the trailblazer this mother was. And even today, my dad says all the time to me "You can't [do that]".
Anyway, as I said before, this woman is remarkable. But she commented to me at one point in our conversation: "You will never know what it's like to be a disabled child. You are lucky to have had a life before disability". I agree. I will never know what it's like to be bussed to a school over an hour away from home, in a minibus full of kids in wheelchairs who have to be dropped off in different neighborhoods, because there is only one handicap-accessible school in a whole borough. Then again, disabled children today will never know that, either. The post-ADA world is much better in the way of education. Therein lies the comparison to my African-American colleague's son. Children today with disabilities haven't lived through "the struggles" of their predecessors. Neither have I. I never had to deal with as many businesses and buildings that I couldn't enter because of inaccessibility; nor have I had the experience of being stuck on my block because there were no "curb cuts" or even forcibly homebound because I could not get out of my building.
Nor will I ever know what it's like to be shunned by other children, whose mommies pull them away in the playground, as if disabilities were contagious. Not to mention that able-bodied kids are bullied every minute if they are "different" in other ways. Able-bodied children have troubles too, just different ones. And at the last meeting I attended at Concepts, some of my fellow board members were commenting about the new director of the Mayor's Office for People with Disabilities, saying that he wouldn't be as effective as his predecessor, because the predecessor had been blind from birth and the new man in the job, has not been disabled his whole life. The man sitting next to me [who is disabled from birth] then said "There's a big difference between someone who has been disabled his whole life, and someone who hasn't" and the woman sitting next to him [also disabled all her life] nodded her head.
Is it fair to compare situations like this? Sometimes. Like when I watch those infomercials from St. Jude's Children's Hospital where Marlo Thomas introduces us to babies and little children going through cancer treatments, I think "There's nothing worse than this, especially if they die. There is no loss worse than watching a child suffering and then burying a child". And yes, having a disabled child is the toughest, especially before ADA. It doesn't mean I can't be effective as a spokesperson. And should it have been a criterion when choosing the MOPD director, that the successful candidate be disabled from birth or childhood, in order to empathize?
Friday, February 1, 2013
This is why I don't like to make New Year's resolutions: there are so many distractions to keep me from fulfilling said resolutions. I know I should update more often, but then I have to manage my bills, my emails, and frequent naps. Then there are the phone calls for doctor's appointments and prescription refills. Not to mention the doctors' appointments themselves, especially if I have to take Access-a-Ride. If I have an appointment in Manhattan which takes a couple of hours, I am literally out of the house for at least six hours, between the cushion I allow to arrive early at my destination in the event of delays, waiting time for my return trip, and the return trip itself -- especially during rush hour traffic, and including other pickups and dropoffs. In theory, you would think I could use my ipad to field emails and write articles, but in reality, the wheelchair tie-downs don't keep me steady enough, and the ride is so bumpy and jumpy that I can't even read. The only thing that works is listening to an audiobook. I am often too tired to concentrate on even that. When I finally get home, I am pretty wiped out and often starved and need to eat something.
New Years Eve I went to the annual get-together at my friend Nancy's house. She has a bunny rescue out of her home in Great Neck. Most of the people who attend are rabbit-rescue people I only see once a year, which is more often than I see most people anyway. Nancy caters in Italian food from a great restaurant in the area, and it's a low-key evening with some really nice people. Louise drives and she used to drop me off and pick me up, but a couple of years ago, she just started staying with me. Now she looks forward to going because the food and company are so nice. It takes two to transfer me into the car however, and Diane was luckily up for the task. So she worked that night and came with us.
The weakness on my left side has become more pronounced and my latest wheelchair modification addressed this, providing guides on either side, to force me to sit straight. And on Thanksgiving, I rode in a car for the first time in almost 11 months. I typically ride in a car to the Walk to Defeat ALS in late September, the Rabbit Care Conference in late October, Thanksgiving, Christmas and New Year's Eve. In 2012, my team didn't do the Walk to Defeat, we didn't go to the Rabbit Care Conference, and I didn't go anywhere for Christmas. I feel badly about not going to my family for Christmas for the last two years, it looks like the Rabbit Care Conference is a thing of the past for me, and I don't know how much longer we will be doing the ALS Walk to Defeat. In the best of times, people move on. The problem with a disease like ALS [especially when there are speech issues] is the opportunities to bring new people into my life, are slim to none. I noticed when I rode in the car Thanksgiving and New Years Eve, that I lean to the left, without the benefit of the guides I have in my wheelchair. So I have to sit against the left end of the back seat, or devise some kind of stiff pillow or wedge to hold up my left side.
New Years Eve I went to the annual get-together at my friend Nancy's house. She has a bunny rescue out of her home in Great Neck. Most of the people who attend are rabbit-rescue people I only see once a year, which is more often than I see most people anyway. Nancy caters in Italian food from a great restaurant in the area, and it's a low-key evening with some really nice people. Louise drives and she used to drop me off and pick me up, but a couple of years ago, she just started staying with me. Now she looks forward to going because the food and company are so nice. It takes two to transfer me into the car however, and Diane was luckily up for the task. So she worked that night and came with us.
The weakness on my left side has become more pronounced and my latest wheelchair modification addressed this, providing guides on either side, to force me to sit straight. And on Thanksgiving, I rode in a car for the first time in almost 11 months. I typically ride in a car to the Walk to Defeat ALS in late September, the Rabbit Care Conference in late October, Thanksgiving, Christmas and New Year's Eve. In 2012, my team didn't do the Walk to Defeat, we didn't go to the Rabbit Care Conference, and I didn't go anywhere for Christmas. I feel badly about not going to my family for Christmas for the last two years, it looks like the Rabbit Care Conference is a thing of the past for me, and I don't know how much longer we will be doing the ALS Walk to Defeat. In the best of times, people move on. The problem with a disease like ALS [especially when there are speech issues] is the opportunities to bring new people into my life, are slim to none. I noticed when I rode in the car Thanksgiving and New Years Eve, that I lean to the left, without the benefit of the guides I have in my wheelchair. So I have to sit against the left end of the back seat, or devise some kind of stiff pillow or wedge to hold up my left side.
Tuesday, December 4, 2012
Thanksgiving, Manual Broken Transfer Chair
Went to my first endocrinologist appointment the day before Thanksgiving. He is a cold, Russian local doctor in Rego Park, but he seems to know what he's doing. My thyroid sonogram revealed a small nodule and I needed to see an endocrinologist. I saw online that Weill-Cornell has a wonderful endocrinology department so I emailed my neurologist, Dr. Shtilbans and asked him if I should get myself in there. He said it wasn't worth traveling over the river; he suggested I see the local doctor and if it turned out to be something complicated, then we could see. And there was a side benefit: my aide and I walked [well I rolled], and I got to be out in the neighborhood and pick up a bottle of wine to bring to Thanksgiving. I don't get to roll around the neighborhood too much, because the aides who work during the day don't like to take me out for some reason. They will do what errands I need, but they prefer to do them alone. So, visits to local doctors are great excuses to get me out locally and I can see what's doing in the 'hood, aside from my lunches with Judy and Louise. So, getting back to my thyroid, the doctor feels a slight goiter, which he is trying to shrink with medication [25mcg of Levothyroxine]. It's kind of a pain in the butt how I have to take it -- first thing in the morning with water and then I have to wait 30 minutes before I eat breakfast. This is a pain with my aides' schedules, because the night aide gets me up at 6:00 am and can't give me breakfast until she has to leave and then the day aide has to clean the breakfast dish. But oh well -- change is good. Later on in December, I have an appointment with a local nephrologist [kidney specialist] because there could be a connection between low potassium and kidney failure -- either low potassium can mean kidney failure or low potassium can be because of kidney failure....ugh, I don't want to make myself crazy. Dialysis is something I don't want in my future.
Thanksgiving was nice. I went to my sister's house and my aide agreed to come along. The food was great and the company was fun. There was one glitch, however, that caused me a lot of anguish later and I didn't see it coming. I have had a manual transfer wheelchair on loan from the ALS Association for about 6 years and both footrests are broken at the point where they attach onto the chair. So I went to Thanksgiving with no footrests. This meant that my feet were hanging down for about eight hours, and when I reached home, my legs were weak. I also didn't sleep all night because my feet were hurting all night and they were freezing cold. And, as usual, when I have to sit in the manual transfer chair for so many hours, my whole body hurts from not having a headrest and the wheelchair being so uncomfortable. It is only for short transfers and not for sitting for long hours. But, since my sister's home is not the least bit accessible and I have to ride in my brother-in-law's car to get there, my custom-fitted motorized wheelchair is not an option.
And now there is the question of the loaner manual chair's repair. The loan agreement from ALSA states that I have to keep it in good working order and return the equipment when I am done in good condition. That means I am responsible for the repair. There is a place nearby called Gem Surgical Supplies but I have to see about pick up and delivery. Otherwise, I have to wait until Louise rents her zipcar at the end of the month to drop it off, and then wait until she takes a zipcar again several weeks later to pick it up. In the meantime, I pray that my motorized wheelchair doesn't break down, because then I would have no backup manual wheelchair. As a matter of fact, I have been looking at manual transfer chairs for me to purchase and I can get a simple one for about $600, or a much better one with a headrest, and that tilts back, for about $1400. Then I think: hmmm, I go to the family maybe once [at most twice] a year-- in fact, for 2011, I didn't go at all. We need the manual chair when I do the Long Island Walk for ALS [which I didn't even do this year due to lack of team interest] and for New Years Eve when I go to Nancy's house in Great Neck [provided Louise can go and I have an aide who cooperates with transfers], so is this a smart investment?
I'll tell you what a smart investment is: new shoes. At my sister's house, everyone was teasing me about my "Frankenstein shoes", but Medicare now only pays for custom shoes for diabetics [which I don't have -- yet] and they will cost $800-1000 out-of-pocket. I still have to calculate my NYSARC trust account to see if I can submit the bill, and hope the NYSARC trustees approve the expense. Anyway, not only are my Frankenstein shoes falling apart, but they were made for the old braces and don't really fit these new braces. I had to stop myself from saying to everyone at Thanksgiving "Would you people like to donate to my shoe fund?" Ironically, I think it's items like my funky shoes that embarrass people from being seen with me.
Thanksgiving was nice. I went to my sister's house and my aide agreed to come along. The food was great and the company was fun. There was one glitch, however, that caused me a lot of anguish later and I didn't see it coming. I have had a manual transfer wheelchair on loan from the ALS Association for about 6 years and both footrests are broken at the point where they attach onto the chair. So I went to Thanksgiving with no footrests. This meant that my feet were hanging down for about eight hours, and when I reached home, my legs were weak. I also didn't sleep all night because my feet were hurting all night and they were freezing cold. And, as usual, when I have to sit in the manual transfer chair for so many hours, my whole body hurts from not having a headrest and the wheelchair being so uncomfortable. It is only for short transfers and not for sitting for long hours. But, since my sister's home is not the least bit accessible and I have to ride in my brother-in-law's car to get there, my custom-fitted motorized wheelchair is not an option.
And now there is the question of the loaner manual chair's repair. The loan agreement from ALSA states that I have to keep it in good working order and return the equipment when I am done in good condition. That means I am responsible for the repair. There is a place nearby called Gem Surgical Supplies but I have to see about pick up and delivery. Otherwise, I have to wait until Louise rents her zipcar at the end of the month to drop it off, and then wait until she takes a zipcar again several weeks later to pick it up. In the meantime, I pray that my motorized wheelchair doesn't break down, because then I would have no backup manual wheelchair. As a matter of fact, I have been looking at manual transfer chairs for me to purchase and I can get a simple one for about $600, or a much better one with a headrest, and that tilts back, for about $1400. Then I think: hmmm, I go to the family maybe once [at most twice] a year-- in fact, for 2011, I didn't go at all. We need the manual chair when I do the Long Island Walk for ALS [which I didn't even do this year due to lack of team interest] and for New Years Eve when I go to Nancy's house in Great Neck [provided Louise can go and I have an aide who cooperates with transfers], so is this a smart investment?
I'll tell you what a smart investment is: new shoes. At my sister's house, everyone was teasing me about my "Frankenstein shoes", but Medicare now only pays for custom shoes for diabetics [which I don't have -- yet] and they will cost $800-1000 out-of-pocket. I still have to calculate my NYSARC trust account to see if I can submit the bill, and hope the NYSARC trustees approve the expense. Anyway, not only are my Frankenstein shoes falling apart, but they were made for the old braces and don't really fit these new braces. I had to stop myself from saying to everyone at Thanksgiving "Would you people like to donate to my shoe fund?" Ironically, I think it's items like my funky shoes that embarrass people from being seen with me.
Monday, November 12, 2012
Post Hurricane Sandy -- Reflections on the "American Dream" and Post-War Building Boom
Well, I have to say [blushingly] that I have been incredibly fortunate through these two atorms -- Hurricane Sandy and the Nor'easter. Not only did I never lose power or heat, but once again I am reminded of the awesome group of aides I have, who managed to work out logistics among themselves to get to me and never leave me without an aide. It helps that two of my aides are a mother and a daughter who live in the same house, but the third lives in Brooklyn, and has a husband who was able to drive her over. My fourth aide is spending a month in her home country of India. She left a few days before the storm, and is coming back a couple of days before Thanksgiving. I'm sure she is watching the news from India and thankful she managed to get away at the right time.
But, as someone who always volunteered for causes like AIDS, cancer, MS and a lot of other charities, it's very tough for me to sit and watch what is happening and feel so helpless that I can't do more to help. Compounding this feeling is the fact that my family and friends in Long Island have not had power or heat for almost two weeks, and might not get it back until Thanksgiving. My sister and her family have a generator, but even people with generators have a hardship getting the gasoline needed to run them. I am hearing that my 84-year-old father is in his home five minutes away from my sister, also with no power or heat. I am told [I can't get in touch with him by email or telephone] that he prefers to stay in his own home [which I totally understand].[update: my dad emailed me the afternoon of Sunday, November 11 to say that the power came back on, and that he spent whole days under the covers in bed] And my good friends and their almost-three-year-old twins are also suffering. I really feel for my hometown of Long Beach, which is destroyed, the Jersey Shore and the Rockaways. As I write this, there are still homes without heat or power almost two weeks after the storm. Some homes have generators but there is a shortage of gasoline to run the generators, and gas rationing is in effect in New York State.
A lot of Long Island communities -- especially those near the coastline -- were built on landfill or marshland, and I think the weak foundations just gave way in combination with the low elevation. This includes a lot of NYCHA housing projects, one of which I spent my childhood in. They were built to house World War II veterans like my dad, and their young families. This storm and the destruction it wrought, had me thinking a lot about this "American Dream" we have all been chasing since after the second world war, the dream of marriage, family, and eventually home ownership. The communities which sprung up on Long Island were in response to that dream and the supply couldn't keep up with the demand, and so the older established communities had to give way to communities built on landfill and marshland and -- in some cases -- on top of dangerous chemical waste, leading to the epidemic of cancer cases in places like Nassau County. This all makes me want to read more about the history of Long Island and Staten Island. I remember when we used to come out from Brooklyn to go to Nathan's in Oceanside when I was a child, and there was a woodsy forest behind Nathan's. And where I am living in Rego Park, apartment houses were built on farmland, although Flushing Meadows Corona Park was built on a big garbage dump, which you can see in the movie "The Great Gatsby". Kind of creepy the way that Robert Moses oversaw the construction of all the highways around my neighborhood just to bring people to the 1939-40 New York Worlds Fair, which took place on a garbage dump.
Anyway, I have to go see an endocrinologist about the nodule on my thyroid. And now, I am scared shitless because Brooke Burke Charvet, the hostess of "Dancing with the Stars" also had a nodule on her thyroid and was diagnosed with thyroid cancer and has to have a thyroidectomy. I am keeping my fingers crossed and will call the doctor I was referred to, first thing tomorrow.....ugh.
But, as someone who always volunteered for causes like AIDS, cancer, MS and a lot of other charities, it's very tough for me to sit and watch what is happening and feel so helpless that I can't do more to help. Compounding this feeling is the fact that my family and friends in Long Island have not had power or heat for almost two weeks, and might not get it back until Thanksgiving. My sister and her family have a generator, but even people with generators have a hardship getting the gasoline needed to run them. I am hearing that my 84-year-old father is in his home five minutes away from my sister, also with no power or heat. I am told [I can't get in touch with him by email or telephone] that he prefers to stay in his own home [which I totally understand].[update: my dad emailed me the afternoon of Sunday, November 11 to say that the power came back on, and that he spent whole days under the covers in bed] And my good friends and their almost-three-year-old twins are also suffering. I really feel for my hometown of Long Beach, which is destroyed, the Jersey Shore and the Rockaways. As I write this, there are still homes without heat or power almost two weeks after the storm. Some homes have generators but there is a shortage of gasoline to run the generators, and gas rationing is in effect in New York State.
A lot of Long Island communities -- especially those near the coastline -- were built on landfill or marshland, and I think the weak foundations just gave way in combination with the low elevation. This includes a lot of NYCHA housing projects, one of which I spent my childhood in. They were built to house World War II veterans like my dad, and their young families. This storm and the destruction it wrought, had me thinking a lot about this "American Dream" we have all been chasing since after the second world war, the dream of marriage, family, and eventually home ownership. The communities which sprung up on Long Island were in response to that dream and the supply couldn't keep up with the demand, and so the older established communities had to give way to communities built on landfill and marshland and -- in some cases -- on top of dangerous chemical waste, leading to the epidemic of cancer cases in places like Nassau County. This all makes me want to read more about the history of Long Island and Staten Island. I remember when we used to come out from Brooklyn to go to Nathan's in Oceanside when I was a child, and there was a woodsy forest behind Nathan's. And where I am living in Rego Park, apartment houses were built on farmland, although Flushing Meadows Corona Park was built on a big garbage dump, which you can see in the movie "The Great Gatsby". Kind of creepy the way that Robert Moses oversaw the construction of all the highways around my neighborhood just to bring people to the 1939-40 New York Worlds Fair, which took place on a garbage dump.
Anyway, I have to go see an endocrinologist about the nodule on my thyroid. And now, I am scared shitless because Brooke Burke Charvet, the hostess of "Dancing with the Stars" also had a nodule on her thyroid and was diagnosed with thyroid cancer and has to have a thyroidectomy. I am keeping my fingers crossed and will call the doctor I was referred to, first thing tomorrow.....ugh.
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