Kathleen Uyttenhove was diagnosed with Parkinson’s disease four years ago, when she was 57 years old. For years she had been an avid runner, but that had become more difficult because she was feeling increasingly stiff. Looking back, she thinks that was already a symptom of her illness. Today, Kathleen has a remarkably down-to-earth outlook on life and is determined to enjoy every day as much as possible.
Anne-Marie Demoucelle recently had a candid conversation with her about setting goals, finding acceptance, and the power of connection.
How did you let others know that you have Parkinson’s?
“At first, I just couldn’t say it,” Kathleen explains. “Sometimes I would say to my friend, “Maybe you should tell them? Then I can take it from there and we can talk about it.” Many people recognise that feeling – the words seem too big, too loaded. Kathleen eventually found an unexpected way to share it with everyone: by announcing her plan to walk to Santiago de Compostela, the so-called Camino. “Compostela rings a bell with people,” she says. “They know that people do that out of grief or illness. That gave me a natural reason to talk about it.”
How do others react when you share your diagnosis?
“People are often shocked because it’s not visible,” says Kathleen. “It’s not like you’re wearing a bandage or in a cast.” Not everyone knows how to respond. During her walk to Compostela, she told a German woman with whom she had felt a good connection. “She couldn’t handle it. She immediately started talking about something else, and I understand that reaction.” But more often than not, the reactions were warm and caring. “A lot of people respond with comfort. And the concern they show afterwards – such as pilgrims who kept asking “How are you doing now?” – really helped me.”
Are the reactions always positive?
“Usually, yes. People tend to react positively at first, but sometimes their understanding stops there. Many people think that Parkinson’s is just about shaking,” says Kathleen. The reality is broader and often invisible: fatigue, concentration problems, difficulty making decisions, reduced self-confidence. The fatigue is particularly hard: “During my Camino, I went to bed by eight o’clock. At home, I can make it to 10 o’clock, but not later. I have nights when it’s difficult to fall asleep. And I get overstimulated quickly – I can’t process many stimuli at once anymore.”
How do you continue to live a good life despite the symptoms?
“I have always been someone who sets themselves activity-related goals. And even now, I feel that I need to keep challenging myself. I need to keep feeling alive. It is necessary to push my body to its limits every now and then.” Goals give Kathleen direction and zest for life, and even small victories give her strength. “My goals don’t always have to be big. It could also be: I’m tired, but I’m still going to mow the lawn,” she laughs.
What helps in difficult moments?
“Sometimes it’s mentally tough, not just physically,” says Kathleen. “When you can’t sleep at night and start worrying… then it gets difficult. You can have a positive outlook on life, but every now and then fear creeps in. And then you have to allow that fear to be there. Being able to share a difficult moment or a fear with my partner always helps.” The power of simplicity helps her enormously. “For example, during the Camino, preparing your backpack every morning, walking in silence, nature, the rhythm. That cadence brings peace to my mind.”
What is your advice for people who have just been diagnosed?
“Try to live in the moment, and above all, keep doing what you enjoy,” says Kathleen without hesitation. “From the moment you hear “you have Parkinson’s”, your life changes – simply by knowing it. But that doesn’t mean you can’t live a good life anymore.” Her most important message: “Focus on what you can still do. There is so much you can still do. It is crucial to exercise as much as possible. And to continue living as you were accustomed to as much as possible. The changes come little by little. Try not to get ahead of yourself. I am planning a nice trip for next year, but I don’t need to know what I will still be able to do in five years’ time.”
What can loved ones and friends do?
“It helps if others understand a little more about the disease. That it’s more than just the tremors, but also has effects that aren’t immediately visible.” Kathleen has received a lot of support, but also noticed that people react very differently. On the way to Compostela, people regularly asked how she was doing, and that was comforting. Practical support also makes a difference. During her fundraising for Parkinson’s research, she felt enormously supported. “People I hardly knew donated 75 euros or 100 euros. That motivated me so much. It wasn’t just about the money – it was the faith they showed in what I was doing.” And, yet she adds a nuance: “It’s good to be able to talk about it, but it shouldn’t be the only thing we talk about. Every now and then is enough.”
What gives you hope?
“I believe that Parkinson’s research is making good progress and that it may all be about to happen. Stabilisation would already be great. A cure would be even better. Maybe as early as next year, but in any case as soon as possible. That’s what we’re all hoping for, isn’t it?” Kathleen’s view of her own future is simple: “Keep working, walking, travelling and meeting people. We have a lot of control over our own lives. I want to do as well as I can and enjoy myself, because life is now.”
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Kathleen completed her walk to Santiago de Compostela in two stages. During the second stage, she linked it to a fundraising campaign that raised more than 5,000 euros in support of Parkinson’s research. Many thanks to Kathleen and her sponsors!
With the support of:
