It will be a tough job, but a group of friends from Aalsmeer is determined to climb the Tour de France classic Mont Ventoux on June 9. They do this together with ALS patient Marieke Bakker during the ‘Tour du ALS.’
Marieke is participating for the ninth time this year. “That is very special, because normally someone with symptoms of ALS does not live longer than four years,” says Aalsmeerder Wim Engel, who lost his father to the disease. He himself has been a ‘motard’ during the tour for eight years. That is someone who monitors safety and takes care of participants en route.
“My father has done so much for us. This is the only thing I can do in return”
Wim once started this to honor his father. “That man has done so much for us. This is the only thing I can do in return,” he tells NH Nieuws. Every year a lot of emotions come up with Wim during the trip. “You experience it on that mountain,” he describes. This is mainly due to the dozen ALS patients who are taking on the arduous climb with their team. “I see a lot of recognition among those people from when my father was ill,” explains Wim. “It’s awful to watch.”
“Of course it touches you when you know that someone is terminally ill and that it is finite”
That is why Wim thinks it is so important to raise money and, in his own words, ‘to get rid of that damn disease’. And so he immediately arranged for his friends from Aalsmeer last year when it turned out that Team Marieke still needed riders. This year they are participating in the Tour du ALS for the second time.
One of the team members is Richard Heemskerk. “Last year I said, ‘once and never again.’ Well, here I am again,” he laughs. The fanatic has even had a van printed, which he will use on his way to France on Friday. Last year’s trip was also ‘a rollercoaster of emotions’ for Richard.
“I don’t know the people,” he says of the participating ALS patients. “But then I see someone my age with his children around it, for example. Of course it touches you when you know that someone is terminally ill and that it is finite.”
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Marieke’s story
Marieke Bakker (35) was told in 2013 that she has ALS. Against all odds, the disease still hasn’t defeated her. The young GP had to give up her big dream to make people better, but she is participating in the Tour du ALS for the ninth time this year. Marieke wants to raise money for research into the disease as long as she can. “My speech is already diminished, but don’t let my voice and message be lost,” she says combatively in a video on the website of the ALS Foundation.
Richard does not like to shift the focus to himself, but he also lives with an incurable disease, namely MS. This year’s trip is extra special for him, because on Monday 6 June the team will climb the Mont Ventoux once to raise money for research into MS. They also participate in ‘Climbing against MS.’
Richard expects this to be quite confrontational. “It is stable for me and I actually try not to think about it,” he describes his own illness. “But I know it can turn and you can just walk one day and not the next. MS isn’t a fatal disease anymore, but when you have it, it’s worthless.”
What is ALS and MS?
ALS is a deadly muscle disease, where your muscles fail one by one. This is because the nerves that run from the brain to the muscles are affected. On average, patients die three to five years after they develop the first symptoms. This is often the result of a failure of the respiratory muscles. The Netherlands has 1500 people with ALS and the related diseases PSMA and PLS. Every year, 500 patients are added and 500 die. Scientists do not yet know what causes ALS and there is no cure yet. That is why money for research is very important.
In MS, there is something wrong with the immune system of the central nervous system. This damages the layer around the nerves and exposes the nerves. This ensures that signals from the muscles to the brain and vice versa do not arrive properly or not at all. Most MS patients develop symptoms of paralysis and paralysis over time. You can grow old with MS, but you will eventually become disabled. There are medicines to slow down the disease, but not yet to cure it. Therefore, money for research is still needed.
The men have already collected thousands of euros in sponsorship money for research into the two diseases, but hope to be able to make a final sprint. You can donate via Tour du ALS and Climbing for MS†