Musings

A lot has happened to me. First of all I feel very lucky to have a wheelchair van. I honestly think I would go bonkers if I didn't have it. To make it even better, my wife likes to drive it, and she and I like to go to the same places.(honestly, I will go wherever she wants to take me, I have suggestions, she has the steering wheel.)
I realize also, when I read about ALS, that the articles always say, if not always emphasized, that the survival rate after diagnosis is 3-5 years. I have had doctors tell me that. I do not say anything...except I think horseshit. I will prove them wrong. I know I have progressed quicker than usual in my disease. But I plan to live and enjoy life for a long time.

I do not want people to feel sorry for me, or anything like that. I want to live and do things to the best of my ability. I did that in my career in the Navy. I hope I taught my sons that. Do not say, Chuck is going to die, say what can we do to live.
Lets go to the movies, the park, the store. Or lets sit around and shoot the shit. I like that.
I know I am going to die, but not today...or anytime soon. So lets do something.

Scared and Embarassed.

Atring and I went to the Casino to have some fun. While we were there, I needed to go to the restroom. Normally that is not such a big deal, but I have had problems standing, and even getting up from a sitting position. Anyway, I went to the head and found the stall for disabled people, of which I am sadly a member. I parked my wheelchair and turned it off. I stood with much effort and prepared to do my business, Suddenly my legs buckled, and I am down on the floor and wondering how to get up. I suddenly feel so helpless, In a bathroom alone and needing help..and I cannot talk. I sat bewildered trying to get up. But the restroom floor is very slick and there s nothing I can grab to help me up. I had my dynavox speech maker.I typed in "Help Me Please."
After about 20 minutes someone opened the door to the stall. It was a big guy. He said
"Do you need help?" He came over and got me up by the arms, but I kept slipping down. He finally lifted me by putting his arms around me and putting me in my chair.
I breathed a sigh of relief. I thanked him so many times, gave him my card.. and I left. I have never felt so useless and helpless. Thank God I got help.

May Showers

It has been over a month since I posted. But my hands are getting weaker and it is getting harder to type.
I have been to several doctors this month. The first was at the UCSD clinic. They see my progression and asked if i needed anything. I met a VA doctor there, He was a good guy, just trying to find ways to help me. We went to the VA hospital, and they gave me a manual wheelchair. We went back a few days later to make sure I was enrolled. They recommended a home care nurse come by weekly. Atring liked that.

We went to the Children's Hospital in La Jolla. They have a great Muscular Dystrophy program, and as a part of that a great ALS chapter. A doc came in to examine me. He was a nice guy and did tests. We got a detailed analysis from him in the mail. He said I have less than a year to live. When I read that I said "horseshit." I do not think he took into account my will to live. I know that I have a lot to live for. And I enjoy life. Problems and triumphs are all a part of life. Problems are not a big deal to me, I see them and figure a way out, if I can. If I cannot solve it, I just forget about it.

I can still walk, although it takes a lot of assistance. I cannot talk, eat or swallow. I cannot get dressed alone. And my wonderful wife gives me my showers.

I will post more. I have but one life and I am going to live it the fullest.