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

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!

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

Five Reasons ALS Patients Should Get Outside

ferncohen.com

Mandy Patinkin to appear on 'Three Rivers': We want�more!

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

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

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!!

"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