John MacPhee was diagnosed with Parkinson’s disease in his forties. Recognising the benefits of exercise in the management of his condition, John made the decision to join his wife at Perth parkrun after being discharged from hospital.
Three months on, John has set himself some lofty ambitions for the next 18 months. This is his story…
Parkinson’s disease is a neurological degenerative disorder which currently has no cure. I was diagnosed in my mid 40s, which is considered Young Onset Parkinson’s Disease (YOPD). About two percent or Parkinson’s is diagnosed in people under 50 years old.
I first noticed a shake in my right arm when I was using a spoon to eat soup. When it went from occurring rarely to often, I took myself along to the GP. Four months and a fair bit of testing later I was diagnosed with YOPD.
The symptoms vary from person to person and often involve slowness of movement, tremor and stiff joints, amongst plenty of other symptoms. I am affected on my right side with both my arm and leg shaking and overall my movements are slow and awkward. This impacts nearly all aspects of day to day life. For instance, I am no longer able to write legibly or use a knife at meal times.
The symptoms are not always the same and because of the nature of the medication I suffer quite a range of ‘on’ and ‘off’ periods. Some days I am a lot more mobile than others – without medications I would find it difficult to move around at all. The single biggest change for me was having to give up work.
At present there are no disease modifying treatments available, all treatments are symptom controlling only. The deterioration in the brain continues unchecked. Although every person with Parkinson’s tracks differently, ultimately there is a stage we will all reach the same end point where basically your body is not your own and your mobility is severely damaged.
There are significant benefits of exercising in the management of my Parkinson’s and when my body allows me I walk to keep fit. There are days when my leg suffers severely from dystonia, a painful twisting and cramping of my leg and foot. When I run it would appear that my dystonia symptoms are better controlled. The overall strengthening of the body helps to reduce and fight some of the other mobility effects of Parkinson’s.
When I was discharged from hospital I made a decision to join my wife at Perth parkrun. Before my diagnosis I was always involved with sport, playing rugby, cricket, football and anything else I could find, but I ran purely as a means to be able to play sport and I viewed it as a necessary evil.
On my first parkrun I ran a bit and walked a bit and managed to get around in about 37 minutes. I was extremely nervous as I hadn’t actually had a run outside for many years and certainly not since my diagnosis. What was apparent throughout that first experience though, was that no-one was judging me – in fact I was encouraged the whole way around. There is a fantastic community spirit amongst parkrunners and this is this aspect that I enjoy most.
After clumping my way around the first time, I set my next target which was to run without stopping. I achieved that goal on my third run, so my next goal was to break half an hour, and my PB is now 29:37. I have since reset my target to one I will really have to work for and I am now working to achieve a goal of 25 minutes. To call what I do running is a misnomer, it is more a form of controlled falling!
I am also currently preparing for a cycling event for a team of Parkinson’s folk to cycle around Route 1 in Iceland during the summer of 2019. The aim is to get the whole distance of 832 miles covered within 20 days, with every mile being cycled by at least one person with Parkinson’s.
My advice to anyone with Parkinson’s is to focus on what you can do, not what you can’t. If you haven’t tried something try it, you just never know what your brain will allow you to do. For family members the advice is always to give leeway as things do happen at a slower pace and also encouragement is so helpful, and please try not to judge what the limits are. There’s nothing like trying!
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