The Living With Parkinson's Blog
Why do people think that because I’m living with Parkinson’s my life is done? It’s a common theme and something that really drives me up the wall. It’s not much fun when I wake up and recall that I need to reach for a packet of pills before I do anything, that I’ll admit. But you get used to it and better to take the stuff and work then try to push through and have that annoying limp / tremor / insert symptom of your own as appropriate.
Yet for some reason people seem to think that people living with Parkinson’s disease want to hear more about the medical side of it. There are conferences and hui that we keep being made aware of. Now don’t get me wrong, I love a good conference. I sure know that I like hearing from motivational people and being inspired. But anything to do with Parkinson’s Disease appears to be about nursing, patients, the five stages of Parkinson’s, advanced care techniques and sundry other things like mobility aides and medication.
Kill Me Now
Where is the focus on living well? Where are the young people (it’s great to be called young when you’re in your forties)? Some people with Parkinson’s have had it for years already, those with juvenile Parkinson’s may have had this since they were in their 20’s or even earlier.
We don’t want to hear about the five stages of Parkinson’s. We don’t want walkers and mobility scooters. Sure, some of this stuff has its place, but every seminar I’ve been to so far (or read the agenda of) has been bleak, looked full of misery and dull as dishwater.
Look at that chap below. I call him ‘the shuffling man.’ It’s the single most depressing image I think I’ve ever seen. Because people think that’s what I will look like because I’ve got Parkinson’s. I’d never wear a jumper like that. Pfft.
Good Move to a Great Life
Emma and I started Good Moves because we’re passionate about a better way for people living with Parkinson’s Disease. It’s NOT all doom and gloom. It’s not all about medication and misery. Well. There is a lot of medication, but it’s very useful, so pass the pill please. But after that, what next?
Get out there. Have fun. LIVE YOUR LIFE. Take up a new sport, play an instrument. Sing. I read a tweet on Twitter where a lady with Parkinson’s remarked that she could no longer sing well and was out of tune. I commented she should continue to sing loud and proud regardless. Enjoy your life, because this is it. We only get one shot and we cannot allow this thing to drive us into the ground before we’re ready.
We want to build a community of people that can help to motivate and inspire each other. We don’t have to just sit around bemoaning our lot, we can still do amazing things. Sure there are issues that cause us irritations, stumbling blocks and we suffer with a very real, very scary medical condition. But do we look at people with asthma or diabetes with the same terror and speak about them in the same hushed tones?
Snow Time Like the Present
(Do you see what I did there?!) This weekend I’m taking my children for a weekend away to New Zealand’s playground, Mount Ruapehu. We’re going to play in the snow and I intend to build snowmen (and women!), go sledging and roll around like a complete idiot. Grab life by the scruff of the neck and enjoy it. Make a Good Move and have fun out there.
Until next time, Kitty.