Because research makes me miserable
I don’t often read much about Parkinson’s and research. Perhaps I ought to do it, running a blog about the very subject, but the truth is it scares me. The first time I realised that was shortly after my initial diagnosis. I read about some people with Parkinson’s, some more affected than others, and I read some websites.
The websites offering information were what scared me most. They felt so clinical, so removed from reality.
I attended a seminar (my first speaking engagement) and was told I could watch the other presenters. I listened to five minutes of a very well esteemed doctor in Wellington. They terrified me. I had to leave the room. When asked why I replied that I couldn’t listen to it. I couldn’t relate to it. They kept saying things like “the patient is…” and “the patient will” that. This made no sense to me. I couldn’t relate to it. I am a Mum, I have four children, I like walking, cycling and just hanging about with my friends. I have so much life left to live, I feel that I’ve barely got going.
Yet here were people talking about “the patient with Parkinson’s” with detachment and no emotion. I understand that doctors cannot and should not enter into emotional feelings with patients, but this was a seminar for and about people with Parkinson’s and their families, carers, or anyone that may be interested. As someone newly-ish diagnosed at 41 it felt quite terrifying to hear all those anecdotes about people who couldn’t toilet themselves or look after themselves.
My own speech was a personal story about my own journey. My diagnosis, the issues surrounding it, and how I was trying to come to terms with the knowledge this thing was with me for life. My constant unwelcome companion. It was met with a standing ovation, and people have been coming to me ever since saying it helped them. By encouraging them to seek out help, feeling that they weren’t alone. One person said “thank you for speaking for us.” Lots of people talk about us. We’re still capable of talking for ourselves.
And that’s the thing really. I was on an online group for people with Parkinson’s recently and there was someone who was advocating giving up medication due to awful side-effects. There was another who complained that they wish they hadn’t been told to ‘fight’ the disease, as it’s not a battle that you’ll win. I couldn’t stop myself. I added my own tuppence-ha’penny-worth (sorry, my northern roots are showing) and waded into the fray explaining that I loved my medication, and I fought as hard as I can. I may not win the eventual war, I’m not so daft to think I can STOP or cure this, but I can stay as active as I can, as long as I can.
There was some to-ing and fro-ing. We eventually decided to agree to disagree. What I couldn’t get them to see is that there’s no point in offering advice on how to deal with your Parkinson’s unless you understand the type you’re dealing with. My Parkinson’s nurse told me that some people have more ‘gnarly’ conditions than others. Everyone is different. We have what’s labelled as the same disease, with wildly different experiences. This makes it a very tricky thing to offer advice and support with.
Yet we need support. Of professionals and each other. There’s nothing quite like a good old complain about the unfairness of life with another person with Parkinson’s. It begins as a bit of a pill-taking competition (how do you take yours?). It usually ends up in gales of laughter. Laughter is a great medicine, everyone feels better after a great big laughing session. Keep laughing.
Until next time, Kitty.
Kitty Fitton is a motivational speaker, MC and comedian. She is also a full-time blogger and writer. She is mother to four small people and was very cross to discover she had Parkinson’s Disease.
Find out more at her personal site below.
Emma Kyriacou is a real-life ninja. Taking up Karate to help fight her Parkinson’s Disease, she’s co-founder of Good Moves and is passionate about promoting exercise to improve mobility and neuroplasticity. (Is that a word? It should be.)
Find out more at her personal site below.