Jan Du Bin
During the contact weekend organized by the ALS Liga at Middelpunt in September we had also an interview with Jan Du Bin from Mechelen and his wife Christiane. The word is now to them!
When and how did you get the ALS diagnosis?
Some two years ago. It all started with paralysis in my arms and hands: they didn't function well anymore, I was very clumsy all the time. I went to see a neurologist in Bonheiden, twice, but afterwards I went to Louvain where they immediately diagnosed me as having ALS.
Did it all start with tinglings in your hands?
They were not exactly tinglings: all of a sudden I couldn't put on my jacket anymore. I used to be rather handy and little by little my hands became incapable of doing anything and more often than not I began to drop things. In the end I even couldn't put my clothes on. But I didn't have any other complaint.
When they told you you had ALS, how did you receive that news? Did you know about the desease at that moment?
Well, I was a bit upset then, I mean it is rather scary at that very moment, isn't it? We didn't quite know what ALS was, but our doctor had said that it was either arthritis or some muscular desease. He told me that in case of a muscular desease the spine would be the cause and then it could be fatal. So, in fact I knew what the diagnosis meant. Which doesn't mean it can't scare you! Anyway, I tend to relativise quite easily: if matters are like that, then so be it.
Having ALS means you have to adapt continually, you and your partner, which is quite difficult at times, one day harder than the next. When you fall from a ladder and break your back, then things don't change much afterwards, whereas ALS is a continually deteriorating desease. Four months ago I could still stand up and take a few steps. They weren't real steps, actually, but for instance, I could still go to the toilet by myself.
About the information we received on ALS I'll be brief: we didn't receive a thing!
They just give you the diagnosis. OK, they said something about a league called the ALS Liga but at that moment you don't want to listen. At that moment you're left alone to yourself… You find yourself in a desert and you have to find things out all by yourself.
What in your experience is the most cumbersome aspect of ALS as a desease?
The fact that you can't do anyhing yourself any longer, that you become dependent on others for everything, even for the most common acts. That sometimes gives you a sense of helplessness. For instance my electric wheelchair: after a certain time it shuts down when I don't use it. Then someone else has to turn it back on. So, if I forget to activate it from time to time, it will shut down and I will be left on that spot, not being able to move.
What is bothering me a lot as well is the fact that I can't use the phone, so when my wife leaves on an errand, I get worried very quickly when it takes her rather long. Because I can't pick up or use a phone, she can't let me know when she's too late either and so I get worried in no time. We hope to get soon a system that makes it possible to make a call by steering with my chin or through speech control as this is something that is really bothering me now.
What's giving you the courage to go on?
In a way I have been lucky: I can see that when I'm in Louvain or here at Middelpunt, all those young people with ALS. I am 66 now and I was lucky to have been normal and in good health a great deal of my life. I can relativise things rather easily and we still laugh a lot but anyway, one day isn't quite the same as the next.
Did ALS change your life? Your work, your hobbies?
Everything has changed, everything comes to a halt. I used to read the newspaper three times in a row. These days I have to improvise with my chair and the enhanced kitchen table in order to read the paper and turn the pages with my tongue. At weekends I had two papers and read them sitting comfortably in my seat. Of course all this is long gone as it's impossible for me now to sit in my seat and read the paper.
I am retired now for 6 years, so speaking about work I must say that the desease didn't affect my life very much. And I haven't got the feeling that my desease prevents me from enjoying my retirement. The thing I do miss, is my bike. We travelled a lot by bike, for instance when we stayed in Diksmuide or Poperinge. Then we always took the bike with us and made trips through West-Vlaanderen. When I see retired people cycling by, yes, it hurts. The fact that I can't drive a car anymore, doesn't bother me at all. In the beginning I had this tribike and before that a lady's bike, but then I fell somewhere in the city and after that incident I switched to a tribike.
Do you value the contact with other patients?
Our children kind of “pushed” us to come here. Now we think that things are not that bad.
I'm not really into talking about these things. It's more something for my wife: she likes to talk, she's the one who talks about it in my place, who maintains contacts with others. Yes, a little chat from time to time, that'll do, but I'll never really go into it.
On the other hand I am happy to come across of patients here who have had the desease for a long time: indeed, most of the time you hear from other people that they know of someone who had ALS, but their stories are always in the past tense. I gives me hope in a sense when I meet someone here like Danny who's had the desease for about 20 years now.
Would you consider to book a short vacation at Middelpunt?
Oh yes, I would, we are certainly coming back here. We are satisfied here, I think that something like this is worthwhile for people like us. In Mechelen they have this taxi for disabled people, “Rivierenland (River Land)”, and for 100 euros we can come to this place, so it's very well feasible. They work with volunteers.
We like to go away and will surely continue to do so, that is of course as long as possible.
How are you looking at the future yourself?
In a positive way! Que sera, sera! We have eleven grandchildren and they all visit us. Of course, don't go whining too much: in that case nobody will be coming in the end.
How do you fill up your time and avoid getting bored?
By watching television as days can take long. Before I used to laugh with people who watched television all day long. But especially when the weather gets worse, I can hardly leave the house and then watching television becomes quite a pastime.
How important is family to you?
Family plays a very big role. Our children often ask their father for advice. Our two boys are active in the field of education and can get extra holidays to assist me. And my grandchildren too are very important to me.
Would you like to add something?
I would like to add that the present system maintained by the government and by medicare institutions for the request and acquisition of a wheelchair is not exactly made for ALS patients. Especially when it comes to these long questionnaires, the huge amount of paperwork and the endless waiting times, then I must say it often disturbs me -and they do know I have ALS, don't they? It's not like we are going to change all of a sudden and start walking again, is it? I made this request for an electric wheelchair and it was denied: my situation was not bad enough…
I can understand there must be some kind of control in order to prevent abuse, but when you have received your diagnosis -ALS- then they should know what that means and take it into account. I went to the Liga and in just one day I got my electric wheelchair, so it is really possible to get help quickly. Why can't this become a standard government procedure, something like an umbrella that you can open and that gives you all you need?
Do you have a motto?
I'm sitting right here, see? But there are worse matters. So “Think positive!”
Around this time last year our little niece was about to be 6 and in November she got sick: she proved to have a braintumor at the worst place possible. After only one month she died. Those are more severe conditions than mine and anyway I have had a life of 66 years.
“So now I'm stuck,” Jan says at the end of the interview, “and this is where my wife has to put on and off my wheelchair so as to be able to move again.”
Source : Nieuwsbrief 162 – October, November, December 2013