“I was diagnosed with the disease two or three years ago, I never know.”comments Raphael. “Three”smiles his wife, Stéphanie, who was present with him at the Alzheimer café.At first, I noticed that he forgot a lot of things. Hairdresser’s appointments, doctor’s appointments… really everything.”continues Stephanie. “I also received a lot of comments at work,” Raphael continues. “So we did the tests to find out what he hadcontinues his wife. We didn’t think about Alzheimer’s. Because he was young. And then, it couldn’t happen to us. But in fact, it could.”
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Needless to say, it was a real blow. “Given the early nature of the disease, I had to stop working. And then, once the neurologist makes the diagnosis, you’re all alone.” He was still entitled to sessions with a neuropsychologist. “But the mutual insurance company only reimburses them for two years.”
“We feel that things are changing inside”
Fortunately, he can count on the help of Stéphanie and her son, Kylian. “Their presence is really important. Without them, I think I would have let the disease take over much more easily.” His wife and son of course help him from a practical point of view. “She’s kind of like my post-it note. She reminds me of what I need to do.” As for Kylian, it’s a bit the same.”When he asks me something when I go shopping, he sends me a message to remind me.” But despite everything, “I sometimes forget to look at my cell phone”. But at least he can still go shopping. “I’m still very independent. I drive, I still do everything by myself.” But here it is, “We tell ourselves that we can prevent the disease from taking over, that we will continue to manage. But there is nothing to be done, we feel that things are changing inside. That is the most difficult thing.”
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But Raphaël did not let himself be defeated and joined “Le Groupe des Battants”, a place of mutual aid and listening, set up by the Alzheimer League, for people suffering from early dementia. It was there that this great athlete decided to embark on this slightly crazy adventure, which he called the Alzheimer Tour. “The goal is above all to promote the Alzheimer’s League and everything it does for people with dementia. And for me too, it’s a challenge.”
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Once he had set himself this challenge, he put everything in place to succeed. “Since July, I have been following a very strict diet. During my preparation, I ran between 25 and 35 kilometers per day.” Because to run the equivalent of a marathon, or almost, every day for nine days, you better be well prepared. “And he even drew his route all by himself,” comments Sabine Henry, the prolific president of the Alzheimer’s League. And now, a little over halfway through his journey, how does he feel? “I’m okay. I’m starting to have a little trouble getting up in the morning, but I’m managing.” And then, it’s worth it. “It’s a great opportunity to shed light on the Alzheimer’s League and the disease.”
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