“My life, my fight”

During the contact weekend of the ALS Liga in Middelpunt in September, we also interviewed Rudy Verniers and his wife Annie. His story below.

When and how have you been diagnosed with ALS?

In September 2011, approximately two years ago today. Before that, for over a year the hospital gave me all kinds of different diagnoses and I underwent all sorts of tests. Eventually, I was referred to Leuven and after one test I was diagnosed with ALS. I had a suspicion myself, my wife already browsed the internet, researching symptoms of ALS, and they corresponded with my symptoms.

I had troubles moving my hand and fingers, walking was difficult, occasionally I would trip. Sometimes my leg did not function well. I already had a (CVA) (cerebrovascular accident, a stroke) twice, the first time the corners of my mouth were paralyzed, the second time my left leg was slightly paralyzed.

When you were told you have ALS, how did you respond? Did you know what it was?

It was really hard learning the news, I was shocked. We had only been married for a year. My wife is from Thai origin and left everything behind, her job, her family. She imagined having another life than this. I could not talk about it to anyone, I kept all of it inside. By now I have processed and accepted it. A psychologist has helped me with that.

What limits you the most in living with ALS?

The most annoying to me is that I am dependent on someone for everything. Having to ask everything, even the most little things, for instance opening a can of soda, or moving my leg. I feel helpless and a burden to everyone. I feel guilty towards my young wife and the people I trouble.

What gives you courage?

At the moment I am very happy to being able to move in my electric wheelchair, it gives me the ability to move around freely. At first, I had an ordinary wheelchair but it was very difficult to get in and out of it. No, back then I was stuck at home and hardly went outside. That has changed now, which makes me feel better, I can see more people, even invite them over at home. That improved the quality of my life significantly.

How big was the impact of ALS on your life, your work, your hobbies? Has a lot changed? 

I was responsible for IT infrastructure at Electrabel, which was a very busy job and put a lot of pressure on me; sometimes I worked nights and had little sleep. When I was diagnosed with ALS, I was already declared partly disabled because of my second CVA[1] in 2006. Soccer was my hobby, my passion. I follow it on TV now, I do not go out to watch the games anymore. I know a lot of people there, I went to KV Mechelen since I was twelve years old. Because I am a familiar face to a lot of people there, I cannot go there anymore since I have ALS. I want to avoid the looks and questions of others, it has become difficult for me.

Do you find the contact with fellow patients useful?

It has been interesting because you learn a lot from each other’s experiences. I received many tips, for example about PAB[2] help systems and related paperwork. The ALS Liga convinced me to apply for it to improve my quality of life. All the work they do for scientific research is also fantastic. It may be too late for me, but it is important it happens.

Would you consider going on a short vacation in Middelpunt?

Well, we already stayed here for 10 days last august. We saw a brochure of Middelpunt in the UZ Leuven and quickly booked. I love the seaside, it is located near the docks, which is a plus. It is fantastic here..

How do you see the future?

I am more positive than I used to be because I am more mobile in the electric wheelchair. In the past, I spent all day in bed and only watched TV. Now, friends come over twice a week, we can go shopping, I go outside and even go on holidays. My first trip was in august, here. We spoke to people here who went to Tenerife and we would like to go there sometime. However, I am not particularly looking forward to the flight and everything that comes along with getting on the plane.

How important is family to you?

Very important. I do not have a lot of family left, my father passed away so I only have my mother and sister. My wife is the most important person to me right now.

Are you a religious person? Are you being more aware of it than before?

Yes, I was raised religiously. Now even more than before, I am not practicing, but deep inside I am a believer. For that reason I do not fear death. I am not afraid to die because I believe that after this, in the above, there will be something beautiful.

Do you have a catch phrase or a slogan?

“My life, my fight”

Source : Nieuwsbrief 162 – October, November, December 2013