{"id":2031,"date":"2025-09-09T14:52:34","date_gmt":"2025-09-09T12:52:34","guid":{"rendered":"https:\/\/demoucelle.sites-stag.agency\/uncategorized\/living-with-parkinsons-dont-wait-for-later-live-life-now\/"},"modified":"2026-06-18T12:39:18","modified_gmt":"2026-06-18T10:39:18","slug":"living-with-parkinsons-dont-wait-for-later-live-life-now","status":"publish","type":"post","link":"https:\/\/demoucelle.sites-stag.agency\/nl\/parkinsons\/personal-testimonies\/living-with-parkinsons-dont-wait-for-later-live-life-now\/","title":{"rendered":"Leven met de ziekte van Parkinson: wacht niet tot \u2018later\u2019. Geniet nu van het leven"},"content":{"rendered":"
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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. <\/em><\/p>\n\n\n\n

Anne-Marie Demoucelle recently had a candid conversation with her about setting goals, finding acceptance, and the power of connection.<\/em><\/p>\n\n\n\n

How did you let others know that you have Parkinson’s?\n<\/strong>\u201cAt first, I just couldn’t say it,\u201d Kathleen explains. \u201cSometimes I would say to my friend, \u201cMaybe you should tell them? Then I can take it from there and we can talk about it.\u201d Many people recognise that feeling \u2013 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. \u201cCompostela rings a bell with people,\u201d she says. \u201cThey know that people do that out of grief or illness. That gave me a natural reason to talk about it.\u201d<\/p>\n\n\n\n

How do others react when you share your diagnosis?\n<\/strong>\u201cPeople are often shocked because it’s not visible,\u201d says Kathleen. \u201cIt’s not like you’re wearing a bandage or in a cast.\u201d Not everyone knows how to respond. During her walk to Compostela, she told a German woman with whom she had felt a good connection. \u201cShe couldn’t handle it. She immediately started talking about something else, and I understand that reaction.\u201d But more often than not, the reactions were warm and caring. \u201cA lot of people respond with comfort. And the concern they show afterwards \u2013 such as pilgrims who kept asking \u201cHow are you doing now?\u201d \u2013 really helped me.”<\/p>\n\n\n\n

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<\/a>Are the reactions always positive?\n<\/strong>\u201cUsually, yes. People tend to react positively at first, but sometimes their understanding stops there. Many people think that Parkinson’s is just about shaking,\u201d says Kathleen. The reality is broader and often invisible: fatigue, concentration problems, difficulty making decisions, reduced self-confidence. The fatigue is particularly hard: \u201cDuring 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 \u2013 I can’t process many stimuli at once anymore.\u201d<\/p>\n\n\n\n

How do you continue to live a good life despite the symptoms?\n<\/strong>\u201cI 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.\u201d Goals give Kathleen direction and zest for life, and even small victories give her strength. \u201cMy goals don’t always have to be big. It could also be: I’m tired, but I’m still going to mow the lawn,\u201d she laughs.<\/p>\n\n\n\n

What helps in difficult moments?\n<\/strong>\u201cSometimes it’s mentally tough, not just physically,\u201d says Kathleen. \u201cWhen 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.\u201d The power of simplicity helps her enormously. \u201cFor example, during the Camino, preparing your backpack every morning, walking in silence, nature, the rhythm. That cadence brings peace to my mind.\u201d<\/p>\n\n\n\n

What is your advice for people who have just been diagnosed?\n<\/strong>\u201cTry to live in the moment, and above all, keep doing what you enjoy,\u201d says Kathleen without hesitation. \u201cFrom the moment you hear \u201cyou have Parkinson’s\u201d, your life changes \u2013 simply by knowing it. But that doesn’t mean you can’t live a good life anymore.\u201d Her most important message: \u201cFocus 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.”<\/p>\n\n\n\n

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<\/a>What can loved ones and friends do?\n<\/strong>\u201cIt 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.\u201d 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. \u201cPeople I hardly knew donated 75 euros or 100 euros. That motivated me so much. It wasn’t just about the money \u2013 it was the faith they showed in what I was doing.\u201d And, yet she adds a nuance: \u201cIt’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.\u201d<\/p>\n\n\n\n

What gives you hope?\n<\/strong>\u201cI 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?\u201d Kathleen’s view of her own future is simple: \u201cKeep 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.”<\/p>\n\n\n\n

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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!<\/em><\/p>\n\n\n\n

With the support of:<\/p>\n\n\n\n

\"Solidaris<\/figure>\n\n\n\n

<\/a><\/p>","protected":false},"excerpt":{"rendered":"

Kathleen recently completed the \u2018Camino\u2019 raising funds for Parkinson\u2019s research. Discover how she approaches life with Parkinson\u2019s disease and her advice for those that are newly diagnosed.<\/p>","protected":false},"author":1,"featured_media":2032,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[24],"tags":[],"class_list":["post-2031","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-personal-testimonies"],"_links":{"self":[{"href":"https:\/\/demoucelle.sites-stag.agency\/nl\/wp-json\/wp\/v2\/posts\/2031","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/demoucelle.sites-stag.agency\/nl\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/demoucelle.sites-stag.agency\/nl\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/demoucelle.sites-stag.agency\/nl\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/demoucelle.sites-stag.agency\/nl\/wp-json\/wp\/v2\/comments?post=2031"}],"version-history":[{"count":1,"href":"https:\/\/demoucelle.sites-stag.agency\/nl\/wp-json\/wp\/v2\/posts\/2031\/revisions"}],"predecessor-version":[{"id":2036,"href":"https:\/\/demoucelle.sites-stag.agency\/nl\/wp-json\/wp\/v2\/posts\/2031\/revisions\/2036"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/demoucelle.sites-stag.agency\/nl\/wp-json\/wp\/v2\/media\/2032"}],"wp:attachment":[{"href":"https:\/\/demoucelle.sites-stag.agency\/nl\/wp-json\/wp\/v2\/media?parent=2031"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/demoucelle.sites-stag.agency\/nl\/wp-json\/wp\/v2\/categories?post=2031"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/demoucelle.sites-stag.agency\/nl\/wp-json\/wp\/v2\/tags?post=2031"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}