Monday, September 14, 2009

No fun

Till now I always tried to ignore the fact that I have a disease. You may think that's impossible but no. I don't know how it is with you, reader of this blog: When I sit in front of TV, read a book, talk to friends, make music, I forget the world around me and I forget my disease. No problem. Moments like that are very often every day.

But yesterday I just coud not use my legs. Getting from one chair into an other: O help I was afraid to fall on the floor. Going to the bahtroom: first I am afraid to fall on the floor. Then I have to stand up again to pull my pants up, again I almost fall. I have to balance on my right foot. My left leg just does nog want to support me. I can't pull up my pant. Husband has to come and help me. But he is not quick enough: help! I almost fall. O.k. I did not fall. Now I must step from toilet into wheelchair. Difficult. Be careful not to fall. I am afraid again.

After a few of those moments it just hits me: I want to stop with this disease, it's no fun anymore. And than all of a sudden I realise: there is no exit in this disease except the one exit I don't want to take. There is no escape. So now you all know, why I had a difficult day yesterday.

But then: one HAS to go one whith life. So just like someone running the marathon: if you're in pain and think you can't go on running, just clench your teeth, ignore the pain and keep on running. You have to if you want to be in the game. So today I just took myself up. I went to my work, I went shopping and to physical therapy. I am in the race again. Please run a bit together with me.

If you want to help find a cure for ALS please look on this link:

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. …………