Today it's up to ALS patient Timmy Putzeys to bring his story, together with his wife Rosita and as always assisted by his little daughter Myrthe. You will certainly know the three of them from some ALS League campaigns, among others the Music for Life clip last Christmas. Timmy has the desease in an advanced stage and is only able to communicate thanks to his intelligent computer that reacts to the movements of his eyes. That way he can speak through his speech computer and communicate through internet.
How and when was ALS diagnosed?
In the hospital in Sint-Truiden there was a period from March to August 2011 during which a huge number of examinations and tests were performed, followed by the diagnosis of ALS in August 2011. We wanted a second opinion and went to the UZ Leuven (University Hospital) where the diagnosis was confirmed and where we continued to follow all treatments.
Did you know the desease? Were you informed sufficiently? Did the information you received fit the experience you had? Are there any matters you were not informed about?
We didn't know the desease. When we asked the professor to explain everything in an understandable language we really had to take a seat: what an awful desease it turned out to be!
When you get your diagnosis they give you a lot of explanation on the desease but it's not exactly getting through at that moment. In fact you don't really want to believe things are like that. “Timmy is yet so young,” his wife Rosita says.
When the weeks following the diagnosis had passed by and we saw the desease and how my situation got worse at a steady pace, that's when you realize that it's true and how terrible ALS can be. Every time we were at the hospital my situation had changed and time and again I received some bad news.
Of course, ther are always matters you don't get any information about, like how do you cope with it when you have a young child and a family? Or how to cope with it in my particular case, when things get worse so suddenly. You get so much information in such a short time, and then you have to handle everything and adapt continually to your situation.
Being ill changes your life. What is the influence on your tasks in the household, your work if any, your hobbies? What's giving you the courage you need?
The desease has completely altered both our professional and our private life. We both had a full-time job and had recently built our house. All our money was in that. I had to quit my job and Rosita had to work only half-time because of the care she had to give to me.
Rosita explains what kind of impact Timmy's desease has had on her life. My life has completely changed, there is hardly any time left for myself. Most of my attention is going to Timmy now and there is but little time left for Myrthe. It's also a problem to find people who can help you: indeed, it's a big problem, especially during the nights. As Timmy needs the help of a nurse for each treatment and for that no service is available, we have to see to it all by ourselves. And pay for it! All that takes bags of money and as a matter of fact we are already in a difficult financial situation. But Timmy is more important than that. I draw a lot of courage from the fact that I've been able to keep Timmy with me that long…
How do you fill up your time? How important is family to you?
Time has both its difficult and its easy days, Rosita tells us. Most of the time I'm busy with everyday matters, such as taking care of Timmy, the household, the paperwork. And sometimes we go campaigning against ALS, which is something we find important as well.
Family is very important in life, but everybody's got his or her own life, a job, a home. In that sense it's a bit everyone on his or her own, but the time they can spend beside that everybody makes the best he or she can to help.
How did you contact the ALS League? How do you experience the offer, the activities, …? Any suggestions for improvement?
Through a client at my job we got to know the 13 AAN ’T WOORD League. Once we went to visit them and we found them very nice, they all lended their ears to our story. Also, I had some problems as to ressources. They managed to give us the ressources we needed and put them at the ALS patients' disposal.
I have to say, they're doing so well at the ALS League.
Do you think about booking a short vacation in Middelpunt? Or have you already done so?
We've been to the holiday-residence in Middelkerke a couple of times. It's been quite an experience and everything's feasible with Jimmy. They have all the necessary equipment for ALS patients, even for someone like Timmy who needs a lot of care. Here you can go on vacation peacefully without too many practical worries.
Is the contact with people who share the same conditions worthwhile?
It's always fun to share your experiences with them. Only, we sometimes think that we frighten other patients because Timmy has already reached an advanced stage and others may see that as something they will go through as well in the future, which is of course something they won't like to see.
Do you have a positive message for other patients?
Our message is: keep on fighting and never give up!
Helping and collaborating in the ALS League campaigns in order to try to get rid of ALS is a positive attitude, as doing so is to the benefit of those who come after you: maybe that way you can prevent that they should endure what we are facing now.
Translation : André De Laet
Source : ALS Liga-magazine 165 – July, August, September 2014