Once the doctor finally told her she had Parkinson’s, she was given a box of tissues, Janet says. “It was very bizarre, because the crying didn’t really come. I received a book about the disease, but I immediately put it away. ” Janet still finds it difficult to read and hear about Parkinson’s disease. “At first I really put my head in the sand, but now I have learned more to accept it.”
Daily life
Although Parkinson’s disease is a progressive disease, Janet is doing a lot better since a DBS operation (where electrodes are placed in the brain, ed.) Than before. “It wasn’t until after the operation that I realized how badly I was,” she says. “I had trouble walking and a lot of panic attacks because of all the medication.” In the meantime, walking is getting better and Janet feels better about herself. “Yet it is not the case that the operation suddenly makes me better. The symptoms have now just diminished somewhat. ”
Janet is still struggling with pain and realizes all too well that her health is deteriorating. “There are days when I scream, ‘Why do I have this? Why can’t I do more? ‘ So I try very hard to look at what I can still do. ” Janet tries to live as ‘normal’ as possible with her fourteen-year-old daughter. Nevertheless, this does not alter the fact that the disease has an impact on family life. “That is of course tough for both of us.”
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The future
Janet hopes that a day like World Parkinson’s Day will raise extra money for research into the disease. “So that more research can be done. And of course I hope that at some point there will come a point that Parkinson’s can be cured. And if I don’t experience that, I hope it will for others. ”
“It is and will remain a rotten disease”, she ends her story. “Most recently I was in the hospital in Groningen and I saw many older people with Parkinson’s who could do little more. Then you realize: that’s how I become. That is very intense. ”
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