Ellis and his daughter Nortje on living with Parkinson’s disease: ‘I’m losing my mother little by little’

Norte sees her father especially change after the diagnosis. “He’s tried to comfort my mother. He wants to arrange everything right and do good for our family, but it’s very difficult for him too. Very sweet, of course, but also exhausting. She has difficulty when her mother receives a euthanasia certificate from the GP, just in case . “It became very serious. Suddenly I realized that this could happen too, and that my mother is getting to a point and saying: ‘This far and no further.’

“Bless Eli”

According to Ellis, there are also positive aspects to Parkinson’s disease. She has private 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: Barki Ellie. If something goes wrong or something happens, we can have a good laugh together. But it’s still a terrible disease for the environment and for the environment.”

By his own will

Her body was no longer working as it should. Sometimes she stands still and can’t move, or Nortey has to help her sleep. “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 might happen. “I’m happy for my sister because she had a baby and that my mother and my niece are doing well. I don’t know what it will be like to have children. I would rather the grandchildren go to grandma’s house and do fun things, but it has to be done in a different way,” says Nortje. “You may never see my children at all.”

The disease is not always visible from the outside in most patients. Nortje: “Someone recently said it’s just Parkinson’s because it doesn’t kill you. That’s true in principle, but you deteriorate and become trapped in your own body. People who have nothing to do with Parkinson’s will be shocked at what that’s really like.”

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Conversations

The family discusses the illness. When Ellis has a hard time, they talk about it. “My mother is moody and can react unreasonably and very explosively. It’s nice to be able to vent to my sister. And I still live at home, so I find support from my parents as well.”

She also has conversations with her friends. Sometimes things go well, and other times things go wrong, which makes it difficult. “A friend was recently shocked because my mother seemed so good, and after a short while she became a pathetic human being. I would like to talk about it, but not everyone understands. You don’t always see it from the outside, but I keep losing my mother little by little.” Ellis: “And this is it.” “The risk of Parkinson’s disease, where people think that if you look good, it’s not bad.”

It was a great loss for Ellis when his cheerful Labrador passed away last year. “She was with me every day, all day long. My wife, my friend. It felt like I was alone from that moment on.” Nortier: “We were all at work, so sometimes the dog was the only person you talked to in the house.”

Every day is different

The impact is significant on all family members. “My father and I decide on Friday evening who will stay at home. If my mother is not feeling well, I help her and it happens sometimes – of course sometimes against my will – that I have to cancel parties or hockey practice.

Many people think that Nortje’s mother shakes violently when they hear that she has Parkinson’s disease. “It’s not so bad, what’s not going well is walking, cycling and daily activities. Her depression symptoms are getting worse. The difficult thing about Parkinson’s is that I can ride my bike today, but half an hour later it’s completely wrong,” Ellis adds. Then I shake like straw and can’t do anything anymore. “Every day is different.”

Disclaimer: This article is based on personal experience. Do you have physical and/or mental complaints yourself? Always consult your doctor.

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