Monday, September 7, 2009

I feel good

I feel good!
After a few months it is time for a update about me, about ALS and about life.
The hardest part of every day is the morning. Getting out of bed, washing, dressing. I am exhausted once I am up and dressed. Also sleeping is getting less relaxing. Turning in bed is difficult, so I try to lay still, but sometimes you just have to turn. Laying on my back is still o.k. but I am very aware of my breathing. Still: my lung activity was recently monitored and is still the same better than everage, so probably it’s just me worrying for nothing.

Every Monday morning I go swimming in the local pool. They have a lift for wheel chairs, so I can get into the water quiet easily. But dressing afterwards is very hard. Still I like it so much that I want to keep doing it as long as possible. Only my legs that are very weak. My arms, hands are perfectly strong, swallowing is still very good. It’s just I can not stand for more than a half minute and walk only one or two steps with support. But as long as I am reading, typing on the computer, sitting at my desk at the office, eating out with my friends and family, I forget my disease. That is nice I think. I forget to worry and just feel “normal”.

Still I made up the balance of my life. And this is what I think:
The length of my life is not so very important for me. I am 54 years old. I never expected that I would not make it to my retirement. I made a big fuss about the question if I had to keep working till my 65 th or maybe could quit before that. This question has become totally unimportant for me. Now I feel It is not important how many years you will live, but important is: have you had a good life, a great life, or maybe a good enough life. I am looking back and I think: I do regret some of the things I did, but still my life was good. And ….. it is not over jet. I can add some more good and great times to my life.

Two songs about regret that I like very much:
Edith Piaff sang: Non, je ne regrette rien (no I have no regrets). As you have read in this blog this does not completely apply to me, but for the most things it is true. If I hear that song, I feel it’s true.

There is also a musician, his artist name is Ace Noface. He has ALS. He composes his music with the help of just one finger and a computer program. He composed the song Regret. See and listen here:
This song is very special. It is different from every other music I know. You can buy his music online, a.o. at

Finally my wish: I feel good now. I really do. I just hope and wish that I can stay as positive as I am feeling now. …………

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