Olivette Mikolajczak has been living with Parkinson’s disease for almost nine years. For the past four years, she has been organised golf tournaments to raise funds for research. She recently shared with Anne-Marie Demoucelle why she has chosen to turn her diagnosis into a force for action.
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Olivette, organising golf tournaments – was that something you imagined you might do when you were initially diagnosed?
“Absolutely not. When you are diagnosed, you are overcome with sadness. But after a while, I chose to see this disease as a challenge rather than a death sentence. It is a struggle, of course, but like climbing Kilimanjaro, it is also a challenge! Living with Parkinson’s as it progresses is quite an adventure in itself.”
How did the idea of a (golf) tournament come about?
“It all started when (my cousin) Isabelle suggested I become a volunteer. When I discovered your story and Patrick’s on the website, I was moved and said yes immediately. That’s when I asked myself: how can I contribute more? Why not organise a golf tournament? The idea was born.”
Bringing people together around your own illness – how did you feel about that initially?
“I admit that at first I was a little embarrassed to organise something that would indirectly benefit me too. But I got over that embarrassment because I realised it strengthened my commitment. Seeing players immediately respond “Yes, we’ll take part!” gave me tremendous hope. No one thought the idea was stupid – on the contrary, everyone thought it was an excellent initiative.”
How did those around you react to your project?
“The reactions have been unanimously positive! A childhood friend even offered to help me last year. He thinks what I’m doing is wonderful and that golf keeps me fit. Thanks to him, we have new participants.”
“My husband Yves takes care of all the logistics – shopping, organising the buffet. My children make the sandwiches. It’s a real family team effort! Even the ladies at my club who can’t participate ask me how they can make a donation equivalent to what they would have spent. Their generosity touches me deeply.”
How do you feel about all this support?
“I am deeply moved by such kindness. Sometimes I feel almost embarrassed by how generous people are. But it’s a positive embarrassment – one of gratitude. People’s reactions are wonderful.”
Why do you think your initiative has had such an impact?
“People aren’t just signing up to make me happy. They are genuinely touched by our efforts to support research. We all know that Parkinson’s is a degenerative disease – that’s the hardest reality to accept. To think that you’ll never be able to walk normally again… But if we could just find a treatment that slows down the disease, that would be amazing!”
Nine years after your diagnosis, how do you broach the subject with new acquaintances?
“When I play with someone I don’t know, I tell them I have Parkinson’s. The way I walk is different, people notice it, so I might as well be transparent. Their reaction is always encouraging: they find it remarkable that I continue to play golf. Ultimately, it doesn’t affect our conversations – we just talk a little about the disease, then life goes on.”
What have you learned about yourself through this experience?
“I’ve discovered that even if you become weak in some areas, you can remain strong in others. Parkinson’s doesn’t mean you can’t do anything anymore! Organising a tournament requires being in contact with lots of people, coordinating teams, managing a thousand details… Even if I walk differently, even if I sometimes have trouble staying still, that doesn’t stop me from organising, meeting people and creating connections. A social life remains essential.”
Why is this social aspect so important to you?
“I’ve always loved meeting people – at our age, everyone has their health problems! Seeing people, talking, sharing – that’s just who I am, and Parkinson’s hasn’t changed that. The disease doesn’t stop me from maintaining my relationships as I did before. Of course, I don’t go to cocktail parties anymore because standing for long periods of time is painful, but when I play golf, I move, I walk, I live!”
How do you manage your symptoms on these special days?
“I’m lucky enough to be able to take an extra dose of medication on those days – my doctor says it’s fine to do so occasionally. I refuse to use a golf buggy because walking is one of the benefits of golf. I’ve invested in a new trolley with a small seat for when I have to wait, but I prefer to walk – it helps me prepare my shots better!”
What advice would you give to someone who has just been diagnosed?
“Above all, don’t give up! Don’t withdraw into yourself. Talk about your illness – you have the right to do so, and it’s even necessary. Definitely continue doing the activities you enjoy. And move, move, move! Even if it’s just walking. As long as you can move, you have to make the most of it. That’s the most important advice I can give.”