Tuesday, May 27, 2008

No more lithium, thank you Ted Scott F*** You Too

please go to my content producer page at Associated Content, read, or at least click on, my articles.....I need clicks!!

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.

Thursday, May 15, 2008

more on Feb 0७, १९६४

Apparently I didn't know the extent of the mania at JFK airport that day. The Beatles arrived on PanAm at 1:00 that afternoon....It is still freaky that my class was on a field trip that day, unsuspecting that there was such pandemonium!

Anyway, I found a great video of the Fab Four when they arrived at JFK
check it out here
Saturday, I did half of the last day of the Ride For Life. It was so nice to be out and around the city. Lately, I have only seen the city from the inside of an Access-a-Ride bus. We met the group at Columbia University and rode to Columbia Presbyterian Hospital. At the University, there was a moving ecumenical service. Then we walked or rolled to Columbia Presbyterian, where there were sandwiches and salads for dinner. It was so nice!

My UTI still won't go away. I am on my third round of drugs. I feel wiped out, and very depressed, like a black cloud following me. I just wish I could hire a companion to go to a museum, a park, or a neighborhood to explore. I am grateful for Judy who comes to take me to Starbucks once a week. I wish there were field trips for ALS patients. Anyway, I am grateful to be able to stay in my own apartment, and not have to go to a nursing home.be But I wish I could make it nicer. Little things like hanging pictures would make it more attractive.

Monday my aide Cheryl [Ellita's mom] called Verizon for me to take features off my landline telephone, and put me on a per-call basis, because I hardly use it and I don't use long-distance except to fax my bills to the NYSARC Trust. I am trying to get some of my other bills trimmed, so that the $725.00 I am allowed to keep can go a little further.

Saturday May 17 is the NYC Walk to D'Feet ALS. This is the first one in the city so, even though I always do the Long Island Walk in September, I am going to this one it's a good excuse to spend part of a day along the Manhattan waterfront. I wish I didn't have to depend on events and friends to get out. I have always been able to make things happen on my own. The worst thing about ALS is loss of independence, and having to wait to be invited somewhere.

I am disgusted by the way I look. Because I can't get in front of the bathroom mirror anymore, I don't often get to see myself. I caught a glimpse of my reflection in a store window yesterday and I can't believe what I have turned into. Suddenly I understood why relatives and friends are staying away. I have lowered my food intake so much, but the pounds are just not coming off. There are exercise classes for disabled women, but they are pricey. I just can't figure out how to burn off the calories. Of course it's hard for me to apply eye makeup, and my skin color looks unhealthy from too much time inside. And I didn't think that hugely obese blob in the store window was really me, but it was! I am just ashamed I let it get this far, and lost such pride in myself. And I can't figure out how it can ever change.

My kitchen is not my own. I got to take my first shower on Tuesday in several months. It took two aides, but we did it. I can make the situation better by replacing my sink and vanity with a wall hung sink, and by removing the wall hamper, but the cost would be prohibitive. The aides don't want to get me in the shower again. The "no rinse" solution is drying out my skin, and I am reading that showers are essential to slough away dead skin, and prevent pressure sores. We took the bathroom door off, so I can get the wheelchair right up to the doorway, but once inside, it's a cooperative effort of two aides working together, and they are afraid of dropping me. I'm sure my new elephant-sized body is doing nothing to ease that fear!

Tuesday, May 6, 2008

Wheelchair Woes

Wheelchair Woes:
So my wheelchair has been at Rehabco for more than 3 weeks already.
Yes, I got a loaner from ALSA, but of course it had no mount for my Mercury communication device, so that meant that everywhere I went, we had to load the Mercury in the carrying case and put it on the back of the wheelchair, then take it out and set it up everywhere. Poor Judy. On our weekly trips to Starbucks, she had that duty. AND it was so slow, if you were walking beside me you had to move in slo-mo!! To go take blood and have my hair done on Austin Street, it took one hour to get there! Good thing it was a nice day! BUT then, on the way back, one of the footrests fell off in the street. So I emailed ALSA and they just brought me another loaner and took the slow one back!!

BUT, I just heard that my own wheelchair is coming back Thursday!! yay!!

Ride For Life is up in the air. RFL doesn't have loaner chairs this year, so I have to make sure my wheelchair is right and if all is okay, I will join the ride on Friday afternoon in Queens, and up to Yankee Stadium. It all depends on my wheelchair battery. I may only do half-days because I don't if my battery will hold up, and there are no back-up wheelchairs if I get stuck. Then on Saturday I hope to ride over the Brooklyn Bridge and up to Columbia for the closing ceremony, or at least to the end of ride party at Columbia Presbyterian..But this is all very ambitious, so I have to play it by ear. Since I haven't really done the fund-raising I did last year, I might scratch the whole deal. I am becoming very casual about plans and goals, because when you are in my position, things rarely go as planned.

I am into my second week with the lithium. This is an experimental treatment for ALS. It is the same lithium that they give patients with bi-polar disorder, but it is a smaller dosage than for bi-polar disorder. But nevertheless, lithium can be toxic so I have to be carefully monitored. It can affect the liver, kidneys, or thyroid, so it wouldn't be worth the risk if it damaged any of those organs. Also, I have to make sure that I am taking in enough fluid, and you know what that means.....

I am going into the "Ambassador" program for ALSTDI [ALS Therapy Development Institute]. I am invited to a big fundraiser at the Museum of Natural Hitory on May 16 [$200 a ticket], which is going to be very nice. For information on ALSTDI, click here