Interview Vrouw.nl (De Telegraaf) (English)

 

Vrouw.nl, De Telegraaf

Interview
32,000 people in the Netherlands have Parkinson’s – a progressive disease that causes certain nerve cells to die, resulting in loss of muscle control. The repercussions: tremor, stiffness and slowness. The disease is often associated with ‘old people’, which is hardly surprising when: only 1 out 10 Parkinson’s patients are under fifty. Mariette Robijn (50) happens to be one of them. ‘When the doctor told me, I thought: this can’t be true.’

“When I first went to the doctor, almost five years ago, my diagnosis was the last thing I expected. Because I had virtually no symptoms. It was only that my right and left hand were reacting more slowly than I was accustomed to.” But the doctor was instantly convinced. It had to be Parkinson’s. “I thought: this can’t be true.”

Two scans and two weeks later, the doctor turned out to be right. “At first, I was completely beside myself. I knew nothing about it either. But I quickly began to identify the symptoms and suddenly began imagining I was suffering from all of them: drooling, tremor, slowness”.

The children
“My husband and I immediately said: ‘We’ll get through this’. And we do. For me, throwing in the towel is no option. We have three children, the youngest of whom was ten at the time and the eldest fourteen.”

The children were the first ones we broke the news to. “It was extremely difficult trying to explain to them, as I still didn’t fully understand what I had myself. I said, ‘I’m still mum. Such and such is going to happen, but I’m not going to die from it.’ Fortunately, they reacted well. And, they would ‘of course’ help with anything that I might not be able to do in the future.”

Symptoms
“I presently suffer largely from fatigue. Which, is sometimes rather tricky, as it’s not immediately visible,” she says. “That fatigue is directly caused by Parkinson’s. My body’s messaging system is slower than before and everything therefore demands a lot more energy. With everything I do, I’m consciously thinking: I’m now going to do this or I’m now going to do that.”

Parkinson’s currently only affects Mariette’s right side. “Parkinson’s first impacts one side of your body and then the other. Luckily, my drugs are working well at the moment. We’re now five years down the line and my symptoms haven’t drastically worsened. Fine motoric activities are rather problematic: I can’t write – but, fortunately, these days I rarely need to – and I walk a little more stiffly.”

The future
 “Another troubling aspect of Parkinson’s, is that you’re unsure what the future holds. “I thought: I’ll have to give up work, my entire life will change. My doctor, however, reassured me that I could definitely continue for another ten years.”

“Above all, I try to live in the here and now. At a certain point my focus shifted. I returned from the fear, to more mundane preoccupations, such as the grocery shopping. And I now feel relatively normal again.”

The future outlook for Parkinson’s patients obviously changes. “I sometimes think: I really don’t want to give this up, but I’ll probably have to. Or: I might as well face it, at some point my brain will no longer function as it once did. I’m going to lose my freedom of movement, and ergo my independence. For me, that’s the worst thing about it.”

Doom scenarios
It’s often said that the younger you get Parkinson’s, the better. Mariette doesn’t entirely agree. “You might be better able to adapt; with more exercise, a healthier lifestyle etc. But you’re also confronted with many more years of decline.”

And that’s certainly not a pleasant prospect. As already mentioned, the disease can affect your brain, resulting in loss of freedom of movement. Which means that you can end up in a wheelchair.

And, although Parkinson’s itself might not be fatal, it can certainly lead to death. “You don’t die from but rather with Parkinson’s. The disease often causes complications in the elderly. It can weaken your immune system for example, resulting in frequent coughing. As your swallowing muscles are also affected, it’s possible to choke on your own mucous.”

“Then there’s Parkinson’s dementia. A rather rare form of the disease causes dementia, which can trigger extreme hallucinations,” explains Mariette.

Adjusting
Mariette’s wider world also required some adjusting. “At first I thought: I’m not going to tell anyone. I’m a business woman, I need customers, and prejudices are still associated with the disease, many of them, admittedly, my own.”

When she did finally talk about it, many were visibly startled. “Some come with an encyclopaedic list of symptoms, because they know someone else with Parkinson’s. Or they ask if it’s really possible, given my age. Sometimes they become frightened, and inwardly or outwardly question: “Maybe I’ve got that too!’.”

“If you’ve got cancer or have broken a bone, you can simply come out with it. But I didn’t get that impression with Parkinson’s,” she says. “Unfortunately, I have to divulge it fairly often. I’ll explain to the cashier in the supermarket for example, that it may take me slightly longer to pack my groceries. In fact, it can be quite a to-do.”

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