I hereby want to give a reaction on the interview by M. J. Stocquart in the last newsletter.
I am 68 years old and as an ALS patient I may say I am in a rather advanced stage.
I would just like to outline how fast things are changing in my case.
I used to have a Burgondian lifestyle and I regularly had a delicious and extensive dinner in the company of my wife -and a glass of wine! I weighed around 80 kg. All my life I did a lot of sports, such as football. Or walking for 20 to 25 km, which I did until recently.
In the spring of 2011 I experienced a variety of symptoms and problems, first a bad left leg and later on it was my left hand.
In the meantime I was getting thinner every day.
I went to see Dr. Madou at the Sint-Augustinus hospital in Wilrijk and at first he diagnosed me as having a form of Parkinson's desease.
Months went by and I got to experience even more problems. Therefore my doctor sent me to the Middelheim hospital where they gave me a full EEG examination. After three days I got the verdict: ALS, a desease for which there is still no cure.
Now it is March 2013 and only two years have passed. Still, my condition has deteriorated considerably and now I can do increasingly less.
In fact I can't manage anything anymore, not even walking. In my apartment I can only get from my couch to my bed if I use a walking stick. Leaving the apartment is only possible in a wheelchair. This is not so evident as I want to go easy on my wife: she shouldn't push my wheelchair too much as she's already had back surgery three times.
I'm not drinking wine anymore: it doesn't taste as good as it did before. My main problem is that all the time I choke on food or drinks. That's why now my lungs are very much infected. Because of all these problems my present weight is hardly 45 kg. Also, speaking clearly has become impossible.
As of the end of January I go to a day care centre once a week. That gives me the opportunity to meet other people. There I happened to meet someone else with ALS.
She can't use her arms and legs anymore and sits in a wheelchair, but she can still manage rather well to eat and speak.
From all this it appears that each patient's pattern is different and that looking for solutions is a very laborious process.
In the night of Friday 22 to Saturday 23 March Willy passed away. It was his family's wish to see to it that this article be published.
Source : Nieuwsbrief 160 – April, May, june 2013