red haired woman in grey hoodie and glasses looking crossly into the camera with folded arms.

Still Fighting

Posted Leave a commentPosted in blog, Parkinson's disease, public speaker

Remember I’d said that I’d written a piece about the way people with Parkinson’s (pwp) were depicted? I was worried about possible implications if I posted it, yet once again I found myself cut adrift, alone, and wondering what more could possibly come along to cause me strife. (Actually, there’s always more, you have to keep smiling!) It made me realise that there really is only you. You depend on you. Because when it gets right down to it, nobody will ever have your back quite like yourself. Cynical? Sure. But after the last few weeks I’ve had, it’s the position I find most realistic. To hell with repercussions, I’m angry. I’m really angry. I won’t be told to pipe down and keep quiet, and here is the piece I wrote. I’ve been thinking a lot recently about the way people with Parkinson’s (pwp) are often portrayed in the media. It’s a subject clearly close to my heart. When I first heard that I myself had Parkinson’s Disease the very first words out of my mouth were “isn’t that like, really bad?” I thought I was going to die. Well. We’re all going to die, but I certainly imagined my […]

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Economic Downturn

Posted Leave a commentPosted in blog, job seeking, Parkinson's disease

And so. I have become another victim of the Covid-19 economic downturn. I received a phone call about the job I had been told I was successful for. The one that they needed filling immediately. The one that was still needed, but slightly delayed due to level 4. Perhaps Mid May. Yes. All being well around there. But no. Ah. The dangers of working (potentially) for a charity or non-profit. Lack of resources. Full restructure. Employment freeze. And I get it. Of course I do. But I wanted that role so badly. For so many reasons, both selfish (I need a job – I need the money badly) and also altruistically. (It was a position where I could have helped others very much.) But it is not to be. Possibly. In a few months. After the restructure. They may call. They may not. I have to rethink. There has been much to rethink recently.   And so. Back to the drawing board and trawling employment sites and looking for suitable roles. The issue here is of course gaining attention. I’m told I’m over qualified for some, but under qualified for others. Usually this is recruiter-speak for ‘not currently employed’ or […]

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I Forgot

Posted Leave a commentPosted in blog, Parkinson's disease

At times like this I detest Parkinson’s. I’ve been remiss. I forgot to take my tablets. I’m lucky, my tablets work well, but I took the last lot at 11.30am as scheduled and I forgot until now, 07.00pm to take the next lot. I was distracted, I was eating dinner with my family. It’s Easter, we made chocolate cupcakes with buttercream and tiny chocolate eggs for dessert. God knows how difficult it’s been to find Easter Eggs this year. And I just forgot. Bitter Little Pill And now my arm is heavy, as is my neck and head. I hate that. I mean, movement is coming back to me, even as I type this I’m feeling better. However, it’s that awful realisation that despite all the smiling, all the laughter, all the “hey, let’s be positive!” I can’t actually cope without taking my pills. Without my medication, my limbs feel strange, like I’m excessively tired. I feel that my body is failing. I’m working out every day. I’ve recently got into yoga, and it’s helping, I can feel it. Despite this, None of it means anything without my pills. I’m a woman of science. I believe in medication. I know […]

image of kitty in a red hat in a field of sunflowers.

Just Another Person With Parkinson’s

Posted 3 CommentsPosted in blog, motivational, Parkinson's disease, public speaker

This week I completed a set of questions for Parkinson’s Life magazine. It got me thinking about how people perceive those with Parkinson’s Disease.   My talks cover that off too of course, and it’s something I’ve pondered myself. I sometimes wonder what my friends truly think of this, and my efforts to continue life as normally as possible. I know some of them think I’m crazy. Some of them think I’m deluded and I’ll drop dead early, and some of them think it’s great and I’m going to be just fine regardless of my affliction. In the end it doesn’t really matter what any of them think. This is ultimately my fight, my battle. Not only physically, but mentally. It would be oh so easy to simply give in. Instead I’m at the gym most days, and despite my fear of falling over my own feet, today I have vowed to get out and go running again. Stealth Fighter I hate running. But I hate Parkinson’s more. I despise this thing that’s taken me by surprise. Stealthily trying to hold me back, contain my body and with it, my spirit and drive to succeed. I hate going to the gym, […]