Anne-Marie Demoucelle spoke with Willem Delrue, who was diagnosed with Parkinson’s disease two years ago at the age of 54.
As a bicycle repairman and father of three sons, he went through a process of discovery and acceptance which provides universal life lessons about daring to acknowledge change, redefining priorities, and the power of honest communication.
Although Parkinson’s disease affects everyone differently, Willem’s story will likely resonate with all those that have been diagnosed with this neurodegenerative condition, their loved ones, and indeed anyone who knows a patient.
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Willem, you were diagnosed with Parkinson’s two years ago. Did you suspect something was wrong at the time?
“I had actually been trying to diagnose myself for months. Things are different than they used to be. You slow down. Your movements aren’t the same. Thanks to my medical background (as an intensive care nurse), I was able to filter what I found on the internet. Based on my symptoms, I quickly came to the conclusion that I had a movement disorder. And then Parkinson’s. I thought: that can’t be true, can it? But many of the symptoms matched. For example, I don’t have tremors, except when I have to exert myself. That matches what I read – it’s different for everyone.”
Then came confirmation from outside. A customer of Willem’s, a neurologist, took him aside after a bicycle repair.
“Willem, I think you’re slower than before. Have you noticed that too? I think you should consult a neurologist.” That was quite direct, of course, but also so important. It wasn’t just me who noticed it. There was someone else – and a neurologist at that – who clearly saw that something was wrong. That was the key factor: okay, there really is something wrong. When I received the official diagnosis afterwards, it was actually a confirmation. A kind of reassurance, even. Now I know. Now it’s clear. Something is wrong, I’m not imagining it.”
What do you want from people who are close to you?
“That they dare to say something if they think something is wrong. That neurologist did just that. She said that she thought I was working more slowly. You expect that (kind of frankness) from people who are close to you. People who don’t know me don’t see that something is wrong. But people who do know me see changes. In my face. In the way I walk. I want them to say something – not as a comment, but out of concern. Tell me if something is wrong. It’s actually doing someone a favour. If I noticed something wrong with someone else, I would say something too.”
How did your loved ones react to the diagnosis?
“My three sons each reacted in their own wonderful way. The eldest, very practical, used his 3D printer to make a pill box that I can always carry with me. The middle one just gave me a hug – sometimes gestures say more than words. And the youngest, a real chatterbox, immediately started talking about CBD and cannabis because he had heard that it would help.
It was more difficult with my parents. My father was ill himself at the time, with symptoms of Parkinson’s but not the disease itself. He didn’t react much. My mother, on the other hand, reacted strongly. “Gosh, where did that come from? How did you get that?” I had hoped she would give me a big hug. Her initial reaction wasn’t easy, but in the end it worked out fine.”
And your friends?
Some people suddenly stopped contacting me for two years after I told them about my diagnosis. That hurts, but it also shows who your real friends are. They stay, no matter what happens. I know my family (is there). I have other friends I can turn to. Those real friends – you notice that they’re there.”
What would you like to say to people who stay away?
“That this is something I can’t help. And that I’m not going to change as a person. I’ll remain the same person you knew. Yes, certain things are more difficult, but that’s no reason to end a friendship. If you don’t know how to deal with it, get in touch. Let me tell you my story. Ask what Parkinson’s actually is, what it does to me. Let’s talk about it.
Parkinson’s patients often have little facial expression. But that doesn’t mean I’m not listening when you tell me something or that I’m not interested. Keep that in mind. Otherwise, people may think, “He doesn’t care what I’m saying,” and then they’ll go talk to someone else.”
How do you deal with daily challenges?
“Getting ready in the bathroom in the morning takes longer than it used to. But hey, so be it. The same goes for other things, such as in the kitchen. At first, my wife said, “Let me cut the vegetables, it’ll be quicker”. Now she accepts that I take my time, but that we’ll get there in the end. My wife likes to be active. She suddenly say, “Let’s tidy up the attic today”. Again, I join in, but it takes longer. We are learning to deal with this difference in pace together.”
What surprised you most about Parkinson’s?
“I lost ten kilos without having to do anything! My metabolism is higher because of the tense muscles. It’s the best diet I’ve ever had! But initially, the disease also made me more apathetic and less interested in what was happening at home. Thanks to the medication, that has completely changed. I now experience family life much more intensely. I used to participate in the rat race – getting up at six o’clock, working hard. Now I’m taking it easy. I think: if it doesn’t work out today, it will tomorrow.
I now realise what is really important. My family. My children, who may later become carers without wanting to – I need to pay attention to that. Facebook and Instagram no longer interest me. All those messages you have to respond to immediately – no, that’s not necessary. I now have both feet firmly on the ground. I know what I want, who is important in my life, who I can turn to when there are problems.”
What do you find the most difficult mental challenge?
“Learning to live with the fact that it won’t get better. At the moment, everything is fairly stable, but you know it can only get worse. That makes me think about things you wouldn’t normally think about: how far do you let it go? When is enough enough? I may be thinking about this early, but I’ve already filled in my documents. I’m not someone who wants to be incredibly dependent on someone else.
I think of my sons and my wife. They have become carers against their will. It’s fine for now – they don’t really have to help me yet. But at some point, they will. They didn’t ask for this. Neither did I. Sometimes you feel guilty about it. And yes, one shouldn’t – it’s not your fault. But those feelings are there.”
What is the most important thing you want to tell people who are diagnosed with Parkinson’s?
“A very practical piece of advice is to keep moving and start physiotherapy as early as possible. Even if you don’t think it’s necessary yet. I really notice a difference after I’ve been to the physiotherapist – in terms of strength, balance and fine motor skills. With the same idea in mind, we also got a dog. Because whether you want to or not, you have to walk – in the morning and in the evening. Just a short walk in the neighbourhood, but you’re outside for a while.
But above all, think carefully about what is important to you. Regardless of what illness you get – Parkinson’s, cancer or something else – many people only realise then what is really important. That rat race, that hard work… it can be over in an instant. What will you have gained from your life? Did you live happily? Whether it’s reading a good book, sitting somewhere in nature, or even checking your Instagram – if something is important to you, take the time for it. Enjoy what you have now and focus on what really matters: the people who love you and are there for you.”
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We are grateful to Willem for his willingness to talk to us and for his candour. His story shows that a Parkinson’s diagnosis not only brings challenges, but can also lead to a more conscious, richer life in which real priorities become clear. Open communication, understanding and, above all, love appear to be the key to a dignified life with this disease, both for the patient and those around them.