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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⭐︎ What to say to a person without Parkinson’s. 9 Tips.

Some of my best friends don’t have parkinson’s, but I still respect them. It can be hard though, to know exactly what to say at the right time without putting your foot in it. I mean, if you don’t have parkinson’s, what DO you have? Can’t be anything special, now, can it. But that’s where we are wrong, we, the people with parkinson’s. So to help you in your next encounter with someone who very clearly does not have parkinson’s, taking you quite off guard, I’ve drawn up a little list of things to say or ask.

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The worst parkinson’s prejudices are mine.

The worst prejudices are mine

The great thing about getting a nasty disease is that you start to appreciate the little things in life soooo much more than you used to. Isn’t it just wonderful to watch the sun rise, set, or whatever your sun does? To hear a bird sing, even if this particular little thing does keep you awake at 5 in the morning. (more…)

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Minions in waiting room

That’s what it should say. No entry for those with a nasty, incurable disease. On Twitter, news sites, newspapers and, most importantly, magazines in the waiting room. Even the most widely read women’s magazines can be an absolute minefield. When you least expect it, they might run a special on your specific illness, and just how much you’re inevitably going to suffer. (more…)

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Here to Wherewolf

Parkinson’s manifests in a sort of delayed delivery of messages, from the brain to the hands for example. I go to pick up the toothpaste, but it takes just that little bit longer than normal. You walk down the stairs and your leg is a faltering cogwheel. Your foot lands differently than expected. Not quite so smoothly. You want to walk, but your feet don’t seem to know it yet. (more…)

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Get up and go

cropped-DSC_0303.jpgHe: What’s changed since last week and now? Nothing’s stopping you from going to that business meeting with the Chairman of the Board of Directors at this regional health care organization. He’s your client, isn’t he?
Me: Yes, but I’m probably going to burst into tears, he’ll see what’s wrong and then I won’t be able to continue oooh what I am going to do it’s the end nooooo they say that you can get dementia and everything, and what if I can’t drive a car anymore?
And your husband repeats: What’s changed since last week, when we’d never even heard about this parkinsons business and now, now that we know that you have it? 

Come on. Get up and go. (more…)

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voldemort and parkinson’s. face your demons.

Waiting for the tube in London, years back. Opposite on the wall was this great billboard, promoting lipstick. Which in itself is an alien concept to me, if it wasn’t for the powerful copy. It said something along the lines of: Face the Boss. Face your ex. Face the undertaker (ok, made that one up). Face yourself. (more…)

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⭐︎ Afraid

Afraid. Wim Rozenberg Photography.I thought that I was scared, but it seems that others are every bit as scared as me. Scared of me, my Parkinson’s, my fear, my tears. How you notice exactly, I can’t quite put my finger on, but you do notice. An imperceptible, almost reverent expectation. And then comes the inevitable question, the question that I too would still dearly love to answer: how did you first spot it? There’s always another hidden question within, a sort of self-check. (more…)

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