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!

My Compassionate Neighbors, Again!

ferncohen.com
Just when I thought things were looking a little clearer, I opened my mail yesterday to find a letter from my co-op board informing me that if I don't come up with a few hundred dollars, they will start "legal proceedings", which I assume means eviction. Another reminder that I am living among neighbors who are not -- well -- very neighborly. Eviction will take a long time, and I will probably be able to get back on track long before they put me out on the street, but this is something I never thought could happen to me. Then again, I never thought ALS could ever happen to me either. Judging by the news of the millions of people losing their homes out there, I am in good company. Suddenly, $7,000 to renovate my bathroom to enable me to take a shower, or even $1800 for a portable "Fawsitt" shower, seem as far out of my reach as any other dream. Of course, neither of these would be an issue if I lost my apartment anyway. Are there wheelchair-accessible homeless shelters?

I had my quarterly appointment at the ALS clinic. I am still stable. The neuro even said he rated me higher in some strength tests. When we both figured it was probably due to the physical therapy I had, he gave me a prescription for some out-patient PT for range-of-motion work. And a couple of angels gave me funds for in-home massage and stretching therapy with Michelle. Courtesy of another angel, I was able to get a haircut and color last week, just in time to attend the Lou Gehrig Awards ALSA Fundraising dinner. It will honor John McEnroe and Sandy Koufax, so I'm pretty excited at being invited to this $1,000-a-plate dinner!

Today on Oprah's show, they featured the Amazon Kindle, a machine that allows you to store and read books online -- very portable. What a great thing for people with ALS who can't hold books and turn pages. At $349.00, it's absolutely prohibitive for me. But on Oprah's site they are offering a $50-off coupon code for the next 7 days. A wonderful item for anyone who can afford it [the books to download are much cheaper than a paper book, and you can also download music and audiobooks]. When I get the co-op off my tail, I can start saving for a Kindle, which is much cheaper than a portable shower!