Thursday, February 21, 2008

blood pressure, movies, blinds

I have been taking my blood pressure faithfully every day. Despite the 25mg of toprol daily, it still stays at 155-177 over 90-120, which is a potential stroke-in-the-making. I have been trying not to eat junk, and we even cut down on my tube feeding formula. I went with my aide to the grocery yesterday and bought low-fat yogurts to snack on. It’s so tough to get the weight down when you can’t exercise.

This weekend was a long one for the working people out there. So on Sunday Louise was able to take some time, due to the extra day to do errands, and we went to the movies to see “Definitely, Maybe”. It wasn’t my first choice, but I limited myself to the two theaters within “walking” distance [i.e. not needing Access-a-Ride]. Anyway, I’m not a fan of romantic comedy, but this film takes place in the Clinton years, particularly 1992, 1994, and 1997. I know exactly where I was in those years, so it all brought back memories for me. And it means so much when anyone takes time out to get me to Starbucks or a movie, or anyplace outside my four walls. I am never alone, because my aides are always here, but companions to go with me to the mall, to lunch or dinner, coffee shop, the movies, are special. Without that, I can certainly keep myself occupied and even amused, but I am limited to my apartment, which needs improvements [see last paragraph].

I had a triumph this week. For months now, I have not been able to shower or wash my hair. I have been using dry shampoo, and doing sponge-baths with a product called “No Rinse” which I now come to find out is not for long-term use due to the fact that it doesn’t slough away dead skin cells. Therefore if I were bedbound, I would be more prone to bed sores. Anyway, that dry shampoo could never take the place of water and shampoo, and my scalp was always itchy. A couple of weeks ago, I convinced one of the aides to let me get into the kitchen with my wheelchair, which just makes it but if I’m not careful it scrapes the walls [ the walls are a mess, by the way]. And we managed to get my head close enough to the sink that she could use a pitcher to shampoo my hair. But it was a mess, because I couldn’t get my head over the sink, so there was lots of water on the floor, and my clothes got wet. Well, yesterday, after 10 days of no hair-cleaning [I really hate that dry shampoo], I found a better method. I found that I was able to stand while holding on to the sink long enough for the aide to shampoo my hair while my head was totally over the sink. It was fast, it was easy, and now I have clean, shiny hair for a while. Now if only I could get my body into the shower I would be very happy!

I heard that my fellow patient, Mark Nurse, was in the hospital with pneumonia, but he is recovering at home. His wife, mom, and aunt took turns staying with him at the hospital. An ALS patient should never be left alone in a hospital, especially if he can’t speak. I learned this when I was in the hospital having my feeding-tube put in. Nobody knows about ALS, and I had nurses yelling at me, and talking around me as if I couldn’t hear or understand. Even though I had a sign over my bed that said that I could communicate with my writing board, my board had been moved out of my reach, and it was horrible. So an ALS patient must have someone there at all times that knows the disease. Next time I land in a hospital, I will make sure there is someone there with mr always, even if I have to pay my aides out of my pocker!

On Friday, I had my reassessment interview for Access-a-Ride. I was interviewed by a psychologist. Did they think ALS is a psychological illness? Anyway he kept asking me how far I am to the nearest subway station. I said “it is not accessible, so why are you asking me?” He said “just tell me where it is, and what the name of the stop is”. Then he kept asking me for the names of my medications. I pointed to the part of the application where I listed all my drugs. He said “Just tell me the names of your medications. I want to see if you know what medications you take”. Maybe I should have played dumb.

Oh.I forgot something very important. My neighbor Lisa and her new husband Barry treated me to new venetian blinds, and Barry put them up for me. Thank goodness! There are so many other small improvements to make, like moving things around, hanging pictures, and new area rugs, and it frustrates me because I can't do it. So I am at least very appreciative of the blinds!!! The other stuff, well, I'm sure I can figure it all out...

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