Noortje sees her father in particular change after the diagnosis. “He tried to relieve my mother. He wants to arrange everything correctly and do good for our family, but it is also quite difficult for him. Very sweet, of course, but also exhausting.” She has difficulty when her mother receives a euthanasia certificate from the GP, just in case. “It all became very serious. Suddenly I realized that this can happen too, that my mother reaches a point and says: ‘This far and no further’.”
‘Parki Elli’
According to Ellis, there are also positive aspects to Parkinson’s. She has special conversations with her husband and children and appreciates things much more. They also don’t have to work on it all day. “We actually joke around, too. I came up with a crazy name for myself: Parki Elli. If something goes wrong or something happens, we can have a good laugh about it together. But it remains a terrible disease to have and for the environment.”
Own will
Her body no longer works as it should. Sometimes she stands still and cannot move or Noortje has to help her get into bed. “If I’m late for the toilet, I pee my pants. I can’t control it, my body has created a mind of its own.”
Ellis doesn’t dare to be alone with her granddaughter because something could happen. “I am happy for my sister that she has a child and that my mother and my niece are experiencing this well. I don’t know what that will be like when I might have children. I would prefer the grandchildren to go to grandma’s and do fun things, but that has to be done in a different way. She may never see my children at all,” says Noortje.
The disease is not always visible on the outside in most patients. Noortje: “Someone recently said that it was ‘just’ Parkinson’s because it doesn’t kill you. In principle that is true, but you deteriorate and become trapped in your own body. People who have nothing to do with Parkinson’s would be shocked by what it is really like.”
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Conversations
The family discusses the disease. When Ellis is having a hard time, they talk about it. “My mother has moods and can react unreasonably and very explosively. It’s nice that I can vent to my sister. And I still live at home, so I also find support from my father.”
She also has conversations with her friends. Sometimes things go well and sometimes things go badly, which makes it difficult. “A friend was recently shocked because my mother looked good, and shortly afterwards she was a pitiful human being. I’d like to talk about it, but not everyone understands. You don’t always see it on the outside, but I am still losing my mother little by little.” Ellis: “And that is the danger of Parkinson’s, that people think that if you look good, it won’t be that bad.”
It is a great loss for Ellis when their cheerful Labrador passes away last year. “She was with me every day and all day. My wife, my buddy. I felt like I was on my own from that moment on.” Noortje: “We were all at work, so the dog was sometimes the only one she talked to at home.”
Every day is different
The impact is great on the entire family. “My father and I decide on a Friday evening who will stay home. If my mother is not doing well, I help her and it sometimes happens that – of course sometimes against my will – I have to cancel parties or hockey training.”
Many people think that Noortje’s mother shakes very much when they hear that she has Parkinson’s. “That’s not too bad, what doesn’t go well is walking and cycling, the daily activities. And her depressive symptoms worsen.” Ellis adds: “The difficult thing about Parkinson’s is that I can get on my bike today, but half an hour later it’s completely wrong. Then I’m shaking like a straw and I can’t do anything anymore. Every day is different.”
Disclaimer: This article is about a personal experience. Do you have physical and/or mental complaints yourself? Always consult your doctor.
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2023-10-29 07:07:42
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