Ah I know some with Parkinson's too...

Hairdresser

I’d been needing to go for two weeks. I’d tried salvaging it with a little mousse, gel and wax, but without much success. At the kitchen table the kids suggested: short isn’t necessarily the answer, mama. True, but neither is long. So, off I went to the hairdresser. She’s young, meticulous and doesn’t sport a trendy new hairstyle and colour every time I see her. She’s also polite. She knows exactly how to handle my oddly positioned crown and precisely where I’m going silver, or almost silver grey. And she instantly senses whether I’m in the mood for a chat or not. Yesterday, and not before time, I plonked myself back down in her chair. She immediately went to work with her scissors and every now and then, checked to ensure it was symmetrical. She cut a bit more and gave a careful blast of the hairdryer. Then I asked…

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The best doctor doesn’t know how I feel

Maatwerk ouderdomspakThank goodness! My neurologist doesn’t know what my sluggish hand feels like. He has no idea how it feels to crawl out of bed, stiff as a board. Neither does my occupational therapist. Yet, despite not knowing what it feels like to have parkinson’s, my neurologist does know how to help me. That’s why he’s a doctor. (more…)

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Interview Health Care Magazine

parkinsons real life storiesThank you, Zorgvisie Magazine, for the interview
(Dutch Health Care Management Magazine)

Mariette Robijn: ‘healthcare providers, be careful what you say’
Three years ago, Mariette Robijn (now 49) received her Parkinson’s diagnosis. In hindsight, and like so many other Parkinson patients, she realised that she’d probably been suffering from the disease for a number of years. ‘I felt that something wasn’t quite right with my right hand and foot movements’. “Nothing to worry about”, said the GP. (more…)

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Gimme Hope

I was the undercover patient at the ParkinsonNet Jubileum Conference in the Netherlands, browsing the respective exhibition stands from the various providers of tools, applications, therapies, medicines and medical know-how. I spoke to health care professionals, listened attentively to Bas Bloem and other scientists, watched videos of patient testimonials, and read about the latest promising research and innovations. All the time looking for that one particular exhibition stand. As little/much/long/short as possible The conference focused on remaining as healthy as possible, for as long as possible, with as little help as possible. All to soften the inevitable. For parkinson's is a destructive disease - your suffering increases, your need for care increases over the years, decades even. It’s a costly affair, parkinson’s. Costly for the care provider and taxing on the patient. The day’s theme was: The Future of Health Care. "And they keep telling me to live in the…

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