Kris, how and when ALS was diagnosed?

Het begon op 29 november 2009 toen ik plots en zonder reden een fles La Chouffe uit mijn handen liet vallen. Ik had ineens een onverklaarbaar krachtverlies. Op dat moment wist ik wel dat ik twee discushernia’s in mijn nek had, dus ik dacht dat die waarschijnlijk op een zenuw duwden of iets dergelijks. Ik hechtte er toen niet zo veel belang aan. Het ging maar niet over en een scan wees uit dat de hernia’s de oorzaak niet konden zijn. Pas later in april 2010 kwam de diagnose ALS.

Did you know about the desease ALS at that point? Could you get enough information?

When the term ALS was dropped, my first thought was: swell, finally they know what’s wrong with me, now we can take matters in hand. But then the doctor told me the quite sobering fact that in 80% of all cases ALS patients only have 3 to 5 years to live after their diagnosis. I was 35 at the time. A second opinion at the UZ Leuven confirmed this diagnosis. It is my experience that even though you get information you will still have to look for most of the papers or information yourself, at every possible authority: medicare, government and not to forget the ALS Liga itself. I have a Personal Assistance Budget. If I hadn’t requested it from the ALS Liga I never would have received it…

Deseases can change your life. What’s the influence on your domestic tasks, your work if any, your hobbies…? What’s giving you the courage to go on?

I did sport 9 times a week and a week is only 7 days! Sportaholic, no? Who knows that was one of the things that caused ALS… Little by little I was forced to abandon sports. Football, squash and running. The last one at a later stage. I had to look for other outlets. Immediately after the diagnosis I cried one night long, as a small child, but the morning after I thought: come on, man! Today is the beginning of the rest of your life! Don’t get bothered by such futilities, do only what you like to do and above all enjoy life!! A piece of advice in gold for all patients: focus on the things you still can and don’t lose too much sleep over those you can’t (any longer). You may find this weird but I can say I’m happier now than I used to be…

How are you filling up your time? How important is your family for you?

I’m doing now what I like to do. That is, more specifically, watch a movie now and then, play games in company, but above all social contact. Friends and family are important, but only as far as they can mention your desease openly and honestly. Don’t hide behind it, never!If your friends don’t know what to say, you will certainly lose them. My friends know that they can talk to me about whichever subject they want and without ever being ashamed. And that includes my desease. People should be able to be themselves with you and if not, you can lose them.

How did you come in touch with the ALS Liga?

By getting information myself. One day I just drove there to have a little chat. It turned out to be quite useful and instructive and they gave me a lot of information on requests, support through ressources, etc.

Each Liga activity has an added value of its own. It’ s up to everybody to do with it as he or she pleases. Take me for instance: today I don’t feel the need to have much contact with other patients. I have my story and so have they. They’re never nice stories and so I don’t need to hear them. On the other hand every patient can always contact me to ask questions, to give tips and information. And gladly so!

Are you considering now to book a short vacation at Middelpunt? Or have you already done so?

I’ll leave for Tenerife tonight. Warmth is good for your muscles. I am still strong enough to see a piece of the world and I sure am not going to let that go. Vacation is very important to me. For the time being I can still manage to do all kinds of things myself, albeit with assistance. When this will become too difficult one day then Middelpunt will be a nice solution. I won’t hesitate then to make them a visit so as to take my mind off all this. But let’s just postpone that, ok?

Is contact with other ALS patients meaningful?

Every contact has its value. You know you’re not alone out there…

Do you have a positive message for other patients?

I can’t repeat it enough: focus on the things you have, don’t lose sleep over those you haven’t. You can do a lot, you just have to want to!!

At times you have to dare to be selfish. Only do what you like. Don’t overdo it either: family and friends are very important, so don’t antagonize them by being too insistent. I’ve already clashed with them, so better be careful in your approach. Anyway, if something is of no particular interest to you, then don’t do it out of politeness. It won’t bring you anywhere. Make good use of your time!

Is there anything special you want to tell me?

When we say ‘end of December’, we usually think of Christmas markets. For this year we are organizing three plus a fire ceremony/event, together with some people that have been confronted with ALS. The benefits will go entirely to the ALS Liga. I am proud to tell you that these events raised about € 6000. As I have a slow type of ALS, I hope to be the poster boy in these actions for many years to come. People who want more information or are eager to talk to me can reach me via kvanreusel74@gmail.com.

Kris Van Reusel in Tenerife

I wanted to make this report as an ALS patient. We (my parents, my girlfriend Katerina and our little son Jasper) wanted to get away from the winter cold here in Belgium. The warmth did me good, effectively. Walking got easier and my muscles gave me a better feeling. The discomforts caused by the cold here, such as trembling legs or painful muscles, disappeared for a while. We had rented a house in which everything we needed was downstairs: as stairs are too difficult for me, I didn’t have any worries in that department. When I heard about Tenerife for the first time I was kind of afraid as you can’t really call the area flat. In just a few kilometers you go from sea level up to 3700 meters, the Teide being thus the highest mountain in Spain. And yet it was all far from bad for me. The first thing I noticed: many, many people in a wheelchair. Indeed, facilities made for disabled people are perfect. You can get everywhere without so much as a step. Practically every restaurant business disposes of a wheelchair accessible toilet and you will find enough parking lots reserved for disabled people. We resided in Costa Adeje, close to Playa de las Americas en Los Cristianos. Speaking of weather conditions it is the best of regions. We did quite a few excursions: I may say I visited the entire island. Often it was not that hot in other places (especially the north). In short, don’t let your condition as an ALS patient keep you from making such a journey. It is a beautiful island, the weather is nice, in other words good for your muscles.  And above all: life there is not expensive. For 15 euros you can have a delightful meal!

Off to the next trip!

Kris

Source: Nieuwsbrief 163 – January, February, March 2014