Nobody in our family expected Parkinson’s to pull up a chair and take a seat at our kitchen table. My son Dominic was just a toddler when I was diagnosed aged 43 and telling my then 14-year-old daughter Emily without frightening her was one of the hardest things that I’ve ever had to do.
Being a mum with Parkinson’s isn’t easy and sometimes when I’m tired and my body isn’t working properly I get frustrated and think – why me? But this is my life and I’ve got to get on with it.
When I’m on my medication I have about a two-hour window when I can hide my symptoms and nobody would have a clue that I have Parkinson’s unless you are familiar with the condition. It has been really hard accepting that I’ll never again have a day in my life where I won’t be taking medication again, and trying to keep up a constant veneer of normal is exhausting. I take up to eight tablets and use one transdermal skin patch a day.
Parkinson’s gets worse over time and alongside my tremor, rigidity and other non-motor symptoms, over the last year I’ve now started to have ‘freezes’ too. That’s where your brain has trouble telling your legs to move, and you can get rooted to the spot.
I’m wary about going out alone too far away from home - I get anxious about the medication wearing off and being stuck somewhere.
Recently you might have read about man with Parkinson’s who froze in his local Halford’s and was then asked to leave by staff for ‘acting suspiciously’. He was left feeling humiliated.
And according to research from the charity Parkinson’s UK 1 in 4 people like me have had their Parkinson’s symptoms confused for drunkenness when out and about.
That’s why I’m sharing my story to raise awareness of Parkinson’s symptoms, and asking people to back a new campaign from the charity that’s calling for shop staff to undertake awareness training so that this sort of thing doesn’t happen in the future.
Please add your name to Parkinson UK’s online letter to show your support. It’ll only take a minute and could make a huge difference.
Thank goodness I’ve never been asked to leave a shop. I’ve had situations where I’ve had some negative attitudes from people though. Like once when I ‘froze’ in a supermarket and a guy got annoyed with me for getting in the way of the freezer door. Or when I’m in a queue and I have a tremor or I’m moving more slowly I think that some people can assume that I’m drunk.
And when I use a disabled parking space when my symptoms are calmer I get people shooting me funny looks.
To begin with all of this really bothered me, I’d get really self-conscious about people staring at me and the tension would build. But then after a while, I made up my mind that if people don’t want to look at me in a positive light then it’s their problem.
And if you have Parkinson’s please remember that people aren’t always horrible. When I froze in my local Sainsbury’s the staff were wonderful and brought me a chair and offered me a glass of water.
But we need to make sure that everyone with Parkinson’s gets that level of understanding because life can be hard enough without having to deal with other people’s rubbish responses to symptoms that you have absolutely no control over.