Parkinson’s won’t stop me living my best life raising awareness
Every hour, two people in the UK will learn they have Parkinson’s disease – an incurable progressive neurological illness
Leanne L Owen, 49, was w an operational fire fi fighter before being b diagnosed with Parkinson’s P disease. Leanne L lives with her husband, h 53-year-old Peter, Peter in west Yorkshire. Yor She says:
My life couldn’t have been more perfect. At 40, I was the highest ranked female in the West Yorkshire Fire & Rescue Service, and happily married with two young sons, Alex and Danny.
I loved keeping fit and only had slight health niggles. I’d noticed that the finger I used on the computer mouse was stiff. And I was suffering pain in my right shoulder, which was diagnosed as a trapped nerve. I took ibuprofen and carried on.
After completing a charity cycle ride, the pain didn’t ease. I tried acupuncture and physiotherapy, with no joy. Then in 2010, on holiday in Mexico, I felt something wrong with my foot. I thought it was my flip-flops. They weren’t making the right sound – the noise was flip-drag. It was my right foot dragging. In fact, my whole right leg wasn’t functioning properly.
Back home, I told my acupuncturist that whatever had happened to my arm seemed to be spreading to my leg. She said that as it was all happening on the same side, it was likely to be a neurological problem, and suggested I get my GP to refer me to a consultant.
I had an MRI scan that December, but it came back clear. Then in February I had a DAT brain scan, which is occasionally used to identify Parkinson’s, particularly in younger patients. I looked on the
Parkinson’s UK charity website, and recognised symptoms like a loss of sense of smell and that my voice was sometimes croaky. Parkinson’s can also affect handwriting, and mine had deteriorated.
I was devastated. I felt my world had tipped on its head. I had to tell the kids – it was so hard but they took it really well. That night, I cried and said to Peter,
“My bubble has burst.” But he just said,
“Don’t worry, we’ll blow another bubble.” It was the sweetest thing he ever said to me. And he was right because although we’ve had to change some of our plans, it has allowed us to make new ones.
I retired from the fire service, which was a wrench, but I began planning a charity challenge, and have done one every year
since s my diagnosis, including l di g a coast coast-toto coast c walk and tandem skydiving. This June, J I intend to cycle 977 miles around the t UK, raising awareness and funds.
Not that this can stop the disease progressing. I feel sometimes that every d day something is taken from me but I try t to focus on what I can do – not what I can’t.
Everyone with Parkinson’s has d different symptoms. At the moment, my right side is affected. I was warned I would likely start showing obvious signs on my left side within five years but it’s been seven years and I’m not too bad.
My sleep is affected; I’m usually awake by 5am. And I feel stiff and slow to start. Showering is a problem, as is lifting my hair to wash it or brushing my teeth. I’ve had to learn to use my left hand a lot.
Instead of writing, I use voice-activated software with a computer, but I don’t think it always recognises a Yorkshire accent!
My cognitive function has been impaired too – I’m easily distracted – and my spatial awareness isn’t what it was.
And then there is the stiffness in my limbs and involuntary spasms called dyskinesia, which is embarrassing and exhausting. No two days are the same.
There’s no cure for Parkinson’s and I’m on drugs to help with the symptoms, including levodopa, which turns into dopamine in the body, and Requip XL, which mimics the effect of dopamine. But all the medication gradually becomes less effective. It’s maddening that there are no new treatments in the pipeline.
But I was positive before diagnosis. So every day I remind myself you can either put your Eeyore head on or put a Tigger head on and be lively and positive. For more about Leanne’s fundraising, go to k977.co.uk or Facebook K977 Cycle Challenge. Find out more about Parkinson’s at parkinsons.org.uk