Janet says that once the doctor finally told her she had Parkinson’s, she was given a box of tissues. “It was so weird, because the crying didn’t really come. I received a book about illness, 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’ve learned a lot more to accept that.”
Everyday life
Although Parkinson’s disease is a progressive disease, Janet does a lot better since a DBS procedure (where electrodes are placed in the brain, liberated) than before. “I did not realize how bad my condition was until after the operation,” she says. “I had difficulty walking and a lot of panic attacks because of all the medications.” Meanwhile, walking improves and Janet is feeling better about herself. However, it is not the case that the process all of a sudden makes me better. The symptoms have now diminished somewhat. “
Janet still struggled with pain and was well aware that her health was failing. “There are days when I cry,” Why do I have this? Why can’t I do more? So I try very hard to see what I can still do. ” Janet tries to live as “naturally” as possible with her fourteen-year-old daughter. However, this does not change the fact that the disease has an effect on family life. “This is of course difficult for both of us.”
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the future
Janet hopes that a day like World Parkinson’s Day will raise additional funds for research into the disease. “Until more research can be done. Of course I hope that at some point there will come a point where Parkinson’s disease can be cured. And if I don’t try that, I hope it will happen to others.”
“It is a rotten disease and will remain so,” she concludes. “I was recently in the hospital in Groningen and saw many elderly people with Parkinson’s disease who couldn’t do more. Then you realize: This is how I became. This is so intense.”
