My story: Erwin Coppejans

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I was born in Sint-Truiden on March 7 1975. Sint-Truiden is still my hometown. I live with my family in Brustem, a sub-municipality of Sint-Truiden. I have been living here since 2003, together with my incredible wife Heidi Stippelmans and my 2 superprincesses Luka and Arwen. We were married on January 7 2000 in Sint-Truiden. Luka was born on March 25 2004 and Arwen on May 5 2007. We live here in our little house which was all built up by ourselves, something that could only be achieved thanks to a lot of assistance and support by our family. Moreover our house is next to my in-laws, in part because of my situation, but anyway that has often been quite a help for us in certain circumstances. As a matter of fact Heidi's dad is a carpenter and we have always taken advantage of his assistance whenever there were chores to be done or small problems to be dealt with. My parents lived in Wilderen, another sub-municipality of Sint-Truiden, and there I attended primary school. I have 2 younger brothers, one by 2 years and the other by 16 years.

My mum has been a housewife for most of the time and my dad had 3 different jobs at the NMBS in Hasselt. Mum is 65 years old and is regularly taking care of our children or supporting us in any other way. And that is not always easy for her, but still to her as a mother I will always be a son having that disease! Unfortunately enough my dad chose in January 2011 to end his life -yet another fierce blow on top of my diagnosis of ALS in April 2007. Indeed, it was my dad who was regularly dropping by to cut the grass or deal with some other little chore in the garden. That way he was often of great assistance to us around the house. Both my parents were born in 1950. My youngest brother, Geert, is helping us from time to time: still a student he is living with our mum. My other brother, Luc, lives with his family in Zonhoven and that's why it's not always simple to drop by but anyway, if need be, I can surely count on him. He has 2 kids as well, a boy and a girl. I am the girl's godfather and my wife is his son's godmother.

As a matter of fact, if necessary, we can always count on our family and even on friends! My best friend Sven is visiting us regularly and helps us with all kinds of things or attends to the garden. Heidi also has brothers and sisters and even adult nieces and nephews (Heidi is the youngest member of her family and is 16 years younger than her oldest sister) and they too are always at the ready to assist or help if necessary. Or uncles and aunts for that matter.

As a kid I kind of flew through life, studying was never an issue, that is up until the third grade. After that things got more complicated but not without a reason. I had to do my year all over again, twice even: the 6th grade and my 1st regentaat (course to become a teacher in the lower grades of secondary education). The reason was simple: I studied insufficiently and I thought it would all come by itself. On the other hand I was much more interested in football! I succeeded rather well in this matter and so, at the age of 15, I went from Duras to STVV (the big team in Sint-Truiden).

After my secondary studies I went to the KHLim in Hasselt to attend to regentaat physical education and I finished these studies in 1998. In the meantime, at the age of 20, I had reached 4th class in football. At that level I played 10 years but in 2006 I switched to the 2nd regional division, more precisely VK Zepperen. Here it was that during my training the first symptoms appeared.

I've always been very sporty and my greatest hobby was and is still football. During my football career I had no serious injuries except a couple of head wounds and some muscle problems. I've never been ill, I've always lived healthily (no smoking and no drinking).

The 1st symptoms go as far back as November 2006 when during a match my fingers often began to cramp. I thought that was rather strange, so at first I went to see the physician who at the time often treated my injuries and other things. As a matter of fact this physician is still coming at our place every day to give the necessary flexibility to my muscles and articulations. In the meantime my physician has become a friend as well. If something goes wrong, I can always ask Geert -that's his name- to help me out.

After 2 treatments of my arm there was still no improvement. From that moment on we started to look at that problem with my fingers and where it could come from. Gradually my left arm and fingers lost their strength. It was Dr Soors in Hasselt who examined me frequently and didn't hesitate then to refer me to Leuven as the diagnosis made in Hasselt pointed in the direction of ALS. The blow I got there was terrible, so more so because things hadn't been formulated very tactfully in Hasselt. Of course, how does one say something like that to one's patients? Because my wife was about to get our 2nd daughter we insisted to go to Leuven to have that diagnosis confirmed as soon as possible. Childbirth was anticipated for early May 2007 and anyway we wanted the necessary certainty. Unfortunately enough we got the same diagnosis in Leuven. In short, I have this confirmation of the ALS diagnosis since April 2007. Naturally that was an awful lot to take in but in the end you don't have much choice: you just have to carry on. Of course you get to think "why me, how can this be?” and you need to be supported first by your family and then also by the rest of the family and your friends in order to deal with it and handle the first blows. Of course this needs time but you can succeed if you stay busy and don't quit! Nonetheless my greatest and first worry upon the reception of the diagnosis was: how about my children, will they get it too, what will happen to them as a result of all this? Honestly, I had never heard of this disease even though I had played football for 2 years with the son of the ALS league president, Danny Reviers. You just don't realize things (when you're healthy) even if you see someone in a wheelchair. Both mentally and physically that is the biggest change you go through as a person, the moment you become terminally ill yourself. That's when you become very much aware of how fragile and worthwhile life can be and that every second, every minute, every hour and every day you have to try to enjoy it all! That's when you see that the understanding and respect of those people who don't really know you is not always what it is supposed to be! Because of your ignorance about the disease you don't know at first how to react to it. That's why we are very much satisfied with the people of the neuromuscular centre in Leuven who have always informed, received and motivated us in the best possible manner. Furthermore we have sought more information about the disease -especially my wife. I myself never made much effort because I didn't feel at all the need to do all I possibly could to know what the future would bring me. Both the diagnosis and the knowledge of the possible outcomes of the disease were enough information for me at that moment. Those nearest to me were even more in the dark as far as this disease was concerned, what it could bring along and what its outcome would be. More often than not the first reaction you hear is something like “everything will be all right”, “ hopefully it isn't that bad” or “is there a cure?” That's when you realize how little people know about this disease and how they have nonetheless this tendency to minimize the facts. Most of the time they mean well and want to comfort you, but alas... As a matter of fact it's not that unlogical that you will only grasp the true meaning of ALS when you are being confronted with it day in day out. That's why it's a very positive thing that these last few years quite a few initiatives have been taken to make this disease known better. Also, getting some famous people involved brings about more support and understanding for this disease.

In the meantime my first medication was given after the diagnosis in Hasselt: the so-called Rilutek, of which is said that it can slow down the disease for 6 months. At that time my left arm was already clearly subject to the disease. And yet I went to playing football again and even went through the whole 2007-2008 season, albeit with a severely weakened left arm at the end. Anyway, I wanted to hang on as long as possible and to do what I liked to do. It was worth the risk. Because of the slower form of this disease your life doesn't change that dramatically from one day to the next. For this I'm grateful as things could be much different, which I realize but all too well. Indeed, now you can make more easily adjustments to your everyday life by spreading them in time. Of course, during the evolution of your disease you will always have some peak moments when adjustments/restrictions coincide more than usually. All this is definitely very hard to take in when you have to constantly adjust yourself and your living conditions. At certain moments you will just come across both yourself and your limitations when you realize that you have to abandon more and more things in your everyday life. It's really difficult, in terms of adjustments and limitations, to have your whole family involved whether you like it or not. That's my biggest issue: a whole bunch of things need to be adjusted or limitated and these adjustments, these limitations have an impact on the daily life of your wife and children. So I have to constantly be at the look-out of the best solution on the one hand and of the less radical adjustment for the rest of the family on the other.

My profession as a physical education teacher was very diverse during the first years, both in teaching forms as in the variety of courses I had to give. I've learnt a lot of this, as a teacher but as a person as well. Eventually I could land a job as physical education teacher in the school of my choice, the elementary school in Wilderen, the school I had attended myself as a boy. Here I could take over my former physical teacher's job and so everything turned out to be nice for me. Things got even nicer still when my oldest daughter went to school there as a toddler. Because I was a teacher of kindergartners too, I could as a proud dad teach my own daughter! Of course at that time I had been working several years in that school. All in all I taught my daughter until she was in her 3rd kindergarten, late 2009, up to the moment I was forced to stop due to my disease. Unfortunately enough I wasn't able to teach my youngest daughter, something she will regularly talk about! “I don't like it that you could never teach me," she says at such occasions!

Another thing I very much liked to do was giving football training to youngsters. My favorite target group consisted of 7-8-year-old players. A very rewarding age as it gives so much satisfaction to a trainer. Between my 18th and my 25th and between my 28th and my 38th I was occupied at youth football -most of the time as youth trainer at STVV. So, initially I was a trainer but afterwards, when my physical situation deteriorated, I acted several years as coordinator for the youngest players at STVV. In June 2014, now 2 years ago, I had to stop completely because it became too difficult for me, both mentally and physically. It really broke my heart as it was my true passion and indeed my number one pastime all day long.

Other nice hobbies of mine still include my PC, creating all kinds of things regarding music, presentations and photobooks, or just watching films and series: these are the things I've always kept myself occupied with as much as possible and that I really want to keep that way. At this moment everything is beginning to become quite difficult even though I have already a couple of resources -among others speech technology software and mouse control right off my electric wheelchair. As I am a person who doesn't give up easily I will try as good and as long as possible to work with everyday things instead of making immediately any big adjustments. But eventually you will feel the need to adjust certain things in order to keep your life on the tracks -and above all when on occasion you get bored and days get (too) long. Maybe it's because of this stubbornness -or should I say determination- that I've only recently contacted the ALS League for the first time. I've always postponed this as long as possible as indeed I wanted to live a normal life as long as possible, without being confronted with the possible outcomes and limitations of my disease in the long run. As a matter of fact this is a big step to make for me and I'm sure it would be the same for many others. I've had but very few contacts with people in the same situation, just one other task I've never been up to until today. I've had a few contacts with Danny -and only with him- via media. Only just now I'm reaching the point where I can feel a certain need for information, through the League and possibly some other people having this disease, information about more support and additional resources or tips that may be of help to handle more easily all the changes and restrictions.

My greatest support, which encourages me the most, certainly remains my family, my children and my wife: every day they are just there for me. We continue to look out for things to do in the near future such as holidays, parties, excursions, dates with friends but also being together with my family when we have a day off. As a family we are still doing things together, as much as possible, even though it gets very difficult these last years for instance to travel around due to my ever increasing restrictions. Since a year I need ventilation to sleep at night. I can't walk any longer, I just manage to stand up and even support myself for a few seconds (for instance to go to the toilet). Eating is rather easy but the last few months I find it difficult to swallow and even talking is causing me problems lately. And yet I'm satisfied I can still do these things rather well. The brooding and the anxieties that have come with it regularly these last months are quite a burden to me. Through the finest of receptions in Leuven and my additional medication that problem could be solved. As of March last year I have my electric wheelchair, which has restored my mobility and freedom. The 2 years before that I used (for longer distances anyway) an ordinary wheelchair. Of course, in the end that was all but comfortable. In this respect I should add that the adjustment of my car didn't bring me the comfort I had expected. We have a Volkswagen Caddy Maxi with a lowering mechanism for our transfers and excursions with the family. The car and the adjustment are of good quality but sitting in the back and in a wheelchair, you will see that comfort is not at all what was expected. Because of the weakened strength of my muscles all over my body, meaning also in my neck, every little pothole, every bump and even the most subtle of irregularities in the road may become a true nightmare. Without a solid collar this is absolutely not feasible. Moreover the view you have in a car is very limited when you are sitting in a wheelchair. That way I see almost nothing of the surroundings. Too bad people are never notified or informed in advance. Now we just can't repeat the acquisition of such a combination car-adjustment. Fortunately I can still sit up front, with the necessary assistance, when I want to travel great distances.

Anyway travelling is certainly one of the most important items on our bucketlist. Last summer (2015) we drove to France. The years before that we were in Italy a couple of times and of course we went to Liverpool on three occasions to have a firsthand look at Simon's matches. You see, Simon Mignolet, the Liverpool goalie, is the son of my wife's eldest sister: he's always received us very well and then he made sure we had some unforgettable moments. Me being such a football fan and supporter these were incredible experiences. That's why I appreciate a lot he's accepted the function of ALS ambassador.

And there you are, one of the very things on my bucketlist: be a spectator once more at Anfield and then preferably in the renewed stadium. It's just that we don't know how to realize this under the given circumstances. First it's rather expensive (flight, hotel,…) and then again, it will be very difficult to overcome all obstacles and problems, such as flying with an electric wheelchair, finding hotel rooms adapted to my specific needs (all adjusted hotel rooms apparently are adjusted to 2 persons, children don't seem to be accounted for), the specific needs of my ventilation device or transport once we're there? Making such trips is becoming more and more a real enterprise which you have to think over and over again: you really have to do quite a bit of research and preparation.

Another of my favorite excursion places is the sea as Wenduine is like a second home for the kids: it's been some ten years now we've been going there. Our week at the sea, in Wenduine, has already been booked for this summer -once again after a lot of research (inquiring, watching photos). You have to look at things from all angles to see if everything is accessible or even feasible. In the end you will only have certainty on the spot. This uncertainty when you book something and the very limited offer for people with disabilities will regularly bring forth frustration. But up until now we've always been able to find a solution.

The situation at home is such that all during the working week I have people with me, both family assistance (in the morning) and my personal assistant. Family assistance, in the person of Christel, offers us support as early as 2010 and since 2015 Carmin has been acting as my personal assistant in my activities during the day. My wife has still a full time job and I prefer it that way as she has the right to have a life of her own. After all she's there for me every evening, after work. All of this is financially and practically only possible for us through our personal assistance budget (PAB). Fortunately we can benefit from this financial provision some years now: without it our situation here would be quite different.

As I said before, I find my happiness in my children whom I see enjoying life every day, do sports, dance, quarrel, grow up and go to school in good spirits as children should do. It's still my greatest satisfaction to raise my children in due respect of the most important values in life. In simple terms I can say I'm trying to be the best and the most normal of dads for them. In this my wife is really irreplaceable, her love and care every day are just fantastic. I've told her many times that I don't get how she can love me that much. You do change as a person but for me personally that's not so different from what it used to be. You become somehow more critical towards people who are complaining about the smallest things. You get to strengthen those ideas and standards you had in the past and so you become even more conscious of what and how to tell people. On the other hand you are relativising a great deal in daily life. In spite of the fact you have a bunch of friends and family who care about you, you feel more and more a 'misfit' of society. Above all when you realize that everyday life around you is generally not enough adapted to people with a disability or a serious disease!

There's another thing I want to talk about: in spite of the provisions to reimburse many resources you still have to pay yourself for things in advance, and far too often so, to obtain the necessary comfort. More often than not even healthcare and the firms dealing in resources haven't got the expertise or the feeling of the patient's exact needs and desires. Sometimes the mere fact of listening to a patient can mean a big step towards a proper solution. Fortunately I know my way around ICT and I am rather inventive: when it comes to my smartphone and PC for instance I have found out quite a few things -things for sure that might come in handy for people in my situation! And so it seems to me important to exchange tips and ideas in the future.

I conclude with the words of our family doctor to my wife once: “(I'm not sure if) your husband will reach 40?" And here I am, turning 41 next month! So I'm glad I've already covered this distance in spite of my disease. I'm conscious about the fact that for many of those men in my situation such is not the case! Every day is a day I've won for myself! Looking forward to the day next is my motto!


Translation: André De Laet