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Yikes! I didn't know so much time went by since my last update!
On Saturday, May 17, a few of us went to the first Walk to D'Feet ALS in Manhattan. We really lucked out on the weather. especially since I was out the night before in the pouring rain [more on that later]. I didn't really put together a formal team. I wanted to go also because it was a walk along Hudson River Park, and it turned out to be a beautiful walk.
The night before, I and my aide Lynette went as invited guests to "An Evening with the Stars", thrown by ALSTDI [Therapy Development Institute]. I am going to be an Ambassador for them. I had my training in a videoconference call.
Last week, I met with Jim Presbey from Extra Hands for ALS. This is a program that has been running in the mid-West for years. They run it with a local high school, and match a pair of students with a patient. The students do tasks for us, like chores, or helping do a project, or just go out with us. I figure they can do certain things the aides don't do. Maybe I will even have them paint one of my walls, which is a mess.
I'm giving up on lithium. This was experimental. According to an Italian study, low doses of lithium showed promising signs of slowing progression I am being weaned off. I noticed that I felt weaker since I have been taking it. Also, I was having trouble getting in the extra fluid. So since it was probably making me feel worse, and drop off to sleep several times a day, what's the point?
We lost another of our group. Mark Nurse was 36. He had been a surgical technician and wasn't married all that long when he was diagnosed. In fact, his 3-year-old son was born right before he got ALS. His aunt Sheila, mom Molly and wife Laurian used to come to our group. Last month Mark came with the family and we all knew he didn't have much longer.
Awkward moment at the annual shareholders meeting of my co-op. There was some stupid woman complaining about the automatic door downstairs [the one they installed as a result of my 21-month journey with the NYC Commission on Human Rights] Recently the door was out of service for several days, and you do have to make an effort to pull it shut. Well, this woman yells "What do we need that door for anyway?". Ted Scott, our brilliant [not] board president, must have repeated 5 times "that door was not our choice. We have a lady in a wheelchair who brought Human Rights here, and we had to put it in"...gee thanks Ted! and at one point he added "we tried to fight against the door, but we lost the fight".....am I being totally delusional when I think "isn't he embarrassed to say that? why can't he say 'we put that door in to accommodate our disabled residents"' mind you, i see people being pushed in manual chairs in my building. They need that door more than I do. Have you ever tried to push a wheelchair and hold a door at the same time. And I'm sure the mommies with strollers appreciate the door, as well as people using canes and walkers. I wanted to scream out "if it were you or a member of your family, you would want that door". So when the board president, idiot that he is, singled me out, don't you think everybody turned and stared at me? And if you think one of my neighbors said "you know, that could be YOU in a wheelchair some day", think again. Not one neighbor came to my defense or to challenge our ass of a board president. Thereby solidifying my belief that each of us is truly alone. If we don't fight for ourselves, nobody will.
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