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 […]

woman with red hair and plum shawl looking directly into the camera over red spectacles.

Money is Everything

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

I had written a great piece about people with Parkinson’s (pwp) and how the media portrays them, however, I’m also worried it is a potential political nightmare. For now, I’m keeping it under wraps. Instead I’m going to talk about the struggle to know what the right thing is when you’re stumbling through the dark looking for a clear way forward. There are many sidelines. So many things I could choose to do. Yet the thing that appeals the most and I keep returning to are my people skills. I know I am great at getting people on board, behind ideas, convincing them to run along with me. In the current climate of rising unemployment, even getting anyone to consider giving me an interview without recent paid work by an institution is difficult.   Why is it people put so much weight behind paid employment by companies? I’ve dealt with very difficult customers (have you looked after four children?), project managed large ambitious ideas (nobody believed that Waikanae Air Scouts could ever exist) and managed large scale events. (Wings Over Wairarapa.) Yet people place no value on any of the outstanding things I achieved through Scouts NZ because it’s free. […]

image of tablets in a bottle and a blister pack

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 […]