During the contact weekend in care hotel Middelpunt we talk to Danny Cappittel, age 57, born and raised in Overijse. Danny has come to Middelkerke without partner or attendant.
Can you describe yourself, Danny?
I grew up surrounded by grapes. I've always thought that our family consisted of poor, hard-working people. But as an afterthought I should add that we were self-employed and so I did have a good childhood for a while. That is, until the day my mother died at the age of 46 of a yet unknown desease -I was 15 then. She probably had ALS too, but at the time the diagnosis was “brain desiccation”.
My mother's death had a great impact on me, but it was worse still for my brother who is 6 years older than I and who's already died of ALS. He did his military service at the time and I was an adolescent. Later, at the age of 24, when I was already married, I had a depression for two years. That was probably to do with my mother's death, as I had suppressed my feelings all those years.
When did you find out that it was ALS?
It was thanks to my brother. When he got ill we didn't know yet what was going on. He went to prof. Robberecht in Louvain rather late in his life. He was the one to make the link between my brother and my mother. He probably searched my mother's file at the psychiatric clinic at Kortenberg. She had been placed there for one year because my father was self-employed and didn't have the time to care for her. In those days taylor-made care as it exists nowadays wasn't known yet.
Prof. Robberecht noted that we had the hereditary ALS type. My brother passed away in May 2013 and didn't have the desease that long, probably because he had been diagnosed rather late. He then took to himself and didn't want to see anybody. And he didn't take any action either.
My first symptom was the collapsing of the ball of my left thumb. My doctor told me that I shouldn't immediately think that I had the same desease as my brother and my mother. Next thing I did: I had me examined to exclude ALS. Contrary to my brother I don't try to shut myself down from the world. This is not because I want to get attention, but because I'd like to organize the IceBucketChallenge in our grape region. I am glad and proud that I can do so, for my descendants.
I worked on a study in Louvain. There everybody stayed in his cozy little corner and there was but little contact between the patients. The IceBucketChallenge brought us together as patients. In fact the IceBucketChallenge is something that comes from the patients as a group. Also, I think that other muscle deseases can be helped here directly and indirectly.
I was diagnosed about two years ago now, but the desease started earlier on. I had my job but otherwise I was keen on cycling. I climbed Mont Ventoux some 35 times! And when it comes to sports I can say I loved skiing. I was one of the “Ardennenrijders”, the long-distance cyclists. I remember that day in 2005 when I climbed Mont Ventoux three times in a row. At the time I was one of the better riders in the club when it came to endurance. Slowly that got worse and I thought, well, I'm getting older, I don't ride enough anymore. I couldn't see the harm in it. Up to a few years ago. I started to be the first one to drop out of the group. It was only afterwards, when I got the ALS diagnosis, that I made the link with this desease.
I used to go cutting down trees in the Sonian Forest (Zoniënwoud). I had a heavy chainsaw you had to pull into action. One day I couldn't do that any longer.
I went on with my work until October last year. I did the follow-up somewhere in the energy market -gaz and electricity. When the market was liberalised, we helped people who wanted to make a change of provider to choose a new one. We also went to see people with tax problems and helped them. I enjoyed doing so. When I knew that I wasn't allowed to work again I had trouble to admit that. You lack the regularity and the social contact. I am someone who really loves to be among people.
What keeps you busy?
Paper work is very time-consuming. When you are one of the pALS you have to prove so repeatedly, in front of the FOD (Federal Government Service), in care, correspondance, for certificates, etc… I stood alone in all that, my wife out of my second marriage speaks French and I was always the one who did all the paper work and was in charge of everything.
Have you found a new hobby in replacement of playing sports fanatically?
Last year in November I went ski-testing in an indoor piste in Komen. The moment I had my ski boots on I could walk again in a normal fashion as these boots are completely rigid. On the other hand I couldn't manage to turn my skis. My brother-in-law was with me then and I saw it really startled him. I saw it in his eyes. So I thought that, as I had to give up entirely on cycling, the same would happen with skiing.
Somebody talked me about www.anvasport.be.
I called those people to make a test and that way I learned snowbiking: some sort of small bike with a handle-bar mounted on skis.
Is it what we often see on TV, the type of skiing where you sit on just one ski?
No, that's sit-ski, as was shown in "Wauters vs Waes" as one of the challenges.
In about fifteen minutes I managed to snowbike. The only problem was getting back on my feet, but all the time I was assisted by a professional. I felt again one of the best skiers.
My hands are getting worse these days and it is my greatest fear, with the arrival of winter, not to be able anymore to hold the handle-bar. Once I have to abandon that too only zitski will be left for me…
In fact I was like thrown into that world as a result of my ambition not to have to remain seated. I need courage to mingle with unknown people. I'm glad I did, despite the fear and the stress. But I knew that I would enjoy the company of new people because I tend to adapt well to new situations. I got to know new friends in the process. Yesterday some of the volunteers at Anvasport who live here on the coast came to visit me during the contact moment.
Would you advise it to other patients as well?
For those sportsmen and women tied to a wheelchair I have this message: try being an Anvasport member. Even als a non-skier you can start doing it. As a matter of fact, I recommend it!
For sit-ski you even don't need the hand function: you can steer with your body as a whole, so you can go on with it without problems.
Playing sports also gives me hope. As an ALS patient the future and your plans cease to exist. Now the fact of going along with this organization has become a target. That is important, I kind of yearn for it, it gives me hope and keeps my thoughts busy in a positive manner.
When I'll arrive at that stage in my desease that I cannot eat or drink anymore, it may end then and there. One of the first things I did was going to the municipality and take care of my self-determination. That is not the same as euthanasia: when it gets too much for me I'll be able to say “good riddance, here it ends, it's been enough”. In my opinion it's some kind of luxury -or call it relieve- that I can say to the one I love that “I don't need any of this anymore”. (Ed.: at this Danny gets a frog in his throat.)
I have a lot of respect for the patients I see here: they still believe in life, even with less and less comfort. For me it may end when drinking and eating becomes out of the question, when I get confined to my bed. The movie Until Always (Tot Altijd) has helped many people, I guess, and it certainly has helped me.
When you can take your leave and tell the ones you love “I love you”, then that is much better than, for instance, a deadly road accident. Not being able to say goodbye is one of the worst things. It's better to leave gracefully. I don't want to be a burden to society.
Are you afraid of dying?
Afraid? No! I rather see it as a solution to my mental suffering. For sure, I'm not running away from things. Trying to survive is something of an instinct, of course, but I'd say it's something you have to handle yourself: you should be possible to decide on when you want to go.
How important are your beloved ones and your family to you?
I'm going to tell you something very difficult. (Ed.: here Danny is almost moved to tears.) Family and beloved ones are important, of course. I had a relationship for 8 years and then we were married in April. But between me and my wife and her daughter there wasn't any real chemistry and last Thursday things exploded in my face. She packed her bags and went away. I choose my children from my first marriage: they were not welcome anymore in my own house. I've made that choice so as to be able to say my last goodbye in their company.
Has ALS played a role in all this?
Yes, it probably has. ALS puts pressure on all the people present. We had a good relationship and we were married because I didn't want to leave my girlfriend without financial ressources. Now this won't succeed anymore as she has abandoned all efforts. I'm sure that without ALS all that wouldn't have happened. The desease also takes its toll on a psychological level, both for me and for my wife and children. Here at the contact moment I meet partners who don't give up, but I think that my wife wasn't as strong. It's a pity. I do hope this situation is only temporary and all problems will be solved.
Translation: André De Laet
Source: ALS Liga-magazine 165 – juli, augustus, september 2014