I was going to write about how great it is to be five years on and still appearing to the outside world as though I’m fine. Parkinson’s is a strange thing. Every day you think “this is the healthiest my brain will ever be” as you know that tomorrow and the next and the next there is something inside you working to bring you down. The days turn into months, then years. We don’t know where we’re going, what our future is like, or how many more days we have left to run, jump and think fast.
Then I was asked to contact someone who had been newly diagnosed and had reached out for help. They were younger than me, with a family and were clearly distressed and worried about the diagnosis. It got me thinking about those first few days of knowledge, and the fear – no – the genuine terror of the unknown.
So perhaps my original idea isn’t actually that bad. Because here I am, five years on, and I am doing well. Paradoxically, I’m fitter and healthier because I have Parkinson’s. I sometimes catch myself. I feel stiff and unwieldy on a morning. But is that because I’m 46 or because I’m dopamine deficient?
I work very hard at staying mobile and strong. If I’m honest, I don’t work nearly as hard as Emma, (pfft – show off) but I do give it everything I’ve got. I was at a Pilates class this morning. I can tell it’s doing what it should and I’m starting to feel less like a fat whale at the back. Yet a couple of times, whilst working on my left side, (the side affected) it felt difficult. More difficult. My morale began to drop. I felt worried. I felt a little scared. Words from people ran through my head,
“they were like you, pretended it wasn’t happening,”
“They were so fit and healthy, but oh, it really took hold hard in their fifties.”
“They went to the gym every day but they are in a home now.”
I don’t mind admitting I felt a tear in my eye. I felt that utter desolation and helplessness begin to wash over me.
Why bother? I can’t stop this. It’s said it can be slowed, but does that mean I will decline faster if I stop exercising? What if I want a holiday? What if I’m just too damn lazy to exercise?
What if I get hit by a bus tomorrow?
Truth is, none of us know what’s around the corner. Nobody has any clue about their future. I suppose if we knew, we’d go stark staring mad. One year ago I was a married woman, living in a huge house in a highly desirable suburb. I had no need of paid employment, and my days were to be filled with baking, gardening and tending to the needs of my husband and children.
One year later I’m living in a small house in a less desirable suburb and I share custody of my children. Yet my ex-husband and I are much happier. Our children are doing well and I’m scraping a meagre living doing what I love.
Parkinson’s is my constant unwelcome companion, yet even that gave me a focus that I had somehow lacked. I often joke that everyone needs an incurable degenerative condition. What I mean is everyone says things like ‘life’s too short’ or ‘live every day to the full,’ but they don’t.
Which kind of brings me back to where I began and the fact that this awful thing has, in fact, made me focus on what really counts in my life. I don’t know anything about how this may or may not affect me in the coming years. I don’t know if my life is limited or it will go on for many years and I’ll become the little old lady I dream of in the little cottage with lots of grandchildren. I don’t know if I’ll be independent, or need assistance.
What I do know is I will not apologise for not fitting the stereotypical image of a person with Parkinson’s. Perhaps one day I will look visibly affected, but I hope that day is either a very, very long way off, or will never happen at all. In the interim, I will continue to exercise, fight, enjoy the odd glass of wine, chase every dream and live my life to the max.
To those of you newly diagnosed, seek help, take your meds and exercise. We know you don’t like it, neither do we, but it’s so important. Keep smiling. This is not the end.
Until next time, Kitty.
If you feel similar, if you need help or feel unhappy:
Reach out to your health professional, doctor, friend or family member. Please don’t allow yourself to feel alone and unhappy. There are people out there to help you.
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.