"Do what you are still able to do."
At our weekend get-together, we also met Antonio, a man from Limburg with Italian roots, whom, together with his wife Nathalia, we interviewed.
When and how were you diagnosed with ALS?
The diagnosis hasn’t officially been made yet, but since July – now two months ago – they believe it’s either PLS or ALS. It all started in 2007 when I started to fall more often during skiing, and regularly started to stumble. At first, I thought I was experiencing some balance problems. Since 2011, I’ve been going to the University Hospital Leuven. For a long time, they thought it might be HSP (hereditary spastic paraplegia), which meant the paralysis would be limited to my lower legs. I’m currently also experiencing loss of strength in my arms and problems with swallowing, so they’re going to take a PET scan and soon I’ll know the diagnosis.
What was your reaction when you were told you might have ALS. Did you know the disease?
I had never heard of ALS. I immediately got in contact with the ALS League, and quickly learned a lot about it. I think I will have a hard time accepting an ALS diagnosis, if I ever do. Especially because it’s so life-threatening. I still hope it might be PLS or some other nerve disease. I hope the doctors are wrong...
What troubles you the most about your situation now?
I’ve always been self-employed, as a general contractor, and I was independent and active in sports. It bothers me that I’m now dependent on my wife for so many small things. It also pains me that I had to sell my business. I also used to be amateur cook, but I can no longer chop things finely or boil water. I used to play badminton and went skiing, now I go handcycling. I try to do the things I’m still able to do.
Where do you find the courage to deal with this situation?
My wife and children give me the most courage, they really do... We have a 25-year old son and a 23-year old daughter, who both still live at home and who have been very supportive. Our son has taken over my chores at home, like mowing the lawn, and our daughter often helps my wife in the kitchen.
Have there been many changes in your life, your work or your hobbies since you fell ill?
Everything has changed completely. I had a successful construction firm for most of my life, at the end I even had a couple of employees, but I was forced to sell it. It was my life, and it pains me to leave it behind. Sports as well... I still try to do what I can. For example, I’m going to participate in the marathon of Hasselt with a handcycle. I hold on to the fact I’m still able to do that.
Do you find contact with other patients useful?
You meet all sorts of patients here, from A to Z, which is pretty interesting, because you’ll quickly find out everything about this disease. Talking to another patient is very different from talking to a normal person. Normal persons don’t understand what it’s really like, while other patients know what it is like to live with this disease and are therefore more understanding.
How did you get in touch with the ALS League? Tell us about your experiences.
I first heard about the ALS League at the University Hospital Leuven. I immediately got in touch, and quickly learned a lot about ALS. I admire what they’re doing here, it’s indescribable really, both this weekend get-together and Middelpunt itself. The information about scientific research provided at this event really interests me as well.
Would you consider booking a short holiday at Middelpunt?
Yes, definitely. Now that I’ve seen what’s possible here, the accommodation, the aids,... You can also bring family and friends. Yes, lovely. You won’t find this anywhere else.
How do you see the future?
Coming here does provide you with some inspiration. You come in contact with people who’ve had this disease for years and are still able to do quite a lot of things. My biggest fear is losing control of my hands, and not being able to use the toilet on my own. I can still take a few steps, but not that many. But I have noticed a loss of hand function these past months.
How do you fill the time?
I get up, go to the OT in the morning and then watch a lot of television. And annoying my wife from time to time (laughs), but then I call my brother to come pick me up. My wife now is also at home the whole day to take care of me. I wish she’d think of herself a bit more. I am looking for new things to do though, like handcycling, so I can keep busy and have an outlet. I really need that. I also read a lot now, which I never used to do, and use the computer, go online, off course. I’m also still coordinating things for a house my son has bought and is currently renovating. I would also like to do some volunteer work, for example for the ALS League, or somewhere else. I’m rather good at accounting and other administrative work, or arranging things over the phone.
How important is family for you?
My wife and children are everything to me. It’s my wife’s birthday today and the children and I are organising a big surprise party at home. It’s my way of thanking her for her support. I used to work day in, day out and never had time for anything. Now I have time to spent with my wife and children, we can go out to dinner and do things we never got around to. I sometimes wonder whether it’s a punishment or...?
Were you religious before? Have you been more preoccupied with it now?
Well, I have already arranged everything for my funeral. I have also already decided on euthanasia when my disease becomes too bad. It’s important for me that it is my own choice. I do often think about it now, whilst it had never crossed my mind in the past.
Do you have a motto or some personal words to live by?
Enjoy life. Do what you are still able to do.
When writing this article, we were informed that Antonio has received his test results and has been diagnosed with ALS. The marathon of Hasselt has finished as well, and Antonio was able to finish it successfully with his handcycle.
Translation: Katia Ombelets
Source: Nieuwsbrief 162 – October, November, December 2013