My journey so far with Parkinson’s has been one of adapting to the unknown, learning about my own body (and what motivates me), and fitting my daily schedule around the times when I need to medicate.
I’ve been on a programme which was all about looking at our journeys with Parkinson’s based on the concept of the Hero’s Journey, as written about by Joseph Campbell.
One session that has had a long term impact on my thoughts and actions was run by Samantha Elandary from The Parkinson Voice Project, which left me with a concept that has changed how I feel, and how I act. The idea seed was about ‘speaking with intent’, that is, imagining, for example, that you are attempting to get your voice over an imaginary volleyball net in front of you.
This is serious, and it’s not just about voice. For a long time, the biggest killer of people with Parkinson’s was aspiration pneumonia, caused by weakened swallowing muscles. And since the swallowing/speaking muscles are all one, it follows that exercising one will help the other.
That led me to wonder — could the concept be widened to a more general ‘act with intent’? I think it can.
It’s all, it seems, to do with finding ways to bypass your autonomic nervous system. I found this out quite early when walking started to become a problem. I would find my right foot cramping up quite quickly, and even a walk to the bus stop would require three or four stops to stretch my foot.
Then, I found that I could walk backwards when I couldn’t walk forwards. I could sometimes run when I couldn’t walk. In the end, I fixed my ‘walking to the shops’ problem, by adopting what I call my ‘Parky stomp’, in which I deliberately pump my arms (one of the things my neurologist noticed that clinched the Parkinson’s diagnosis was that I wasn’t swinging my right arm), and take bigger steps, while upping the pace.
When I run, I have found music that works perfectly for me — Runseek on YouTube. My favourites are the ‘180bpm HIIT’ tracks which allow me to switch from running at 180bpm and walking (the Parky stomp!). You have to give them all a try and see what works for you. Incidentally, I never used to run to music, but I always do now. As an experiment, I bought myself a pair of Aftershokz bone conducting headphones which allow me to have the music when I run but still be conscious of what’s going on around me and find they work really well for me.
Which brings me back to Thursday evenings. So I can ‘Parky stomp’ the 2 miles to choir practice, sing for a couple of hours and run back home again.
And I feel so much better for it.
PS Just a note about choirs. The choir I am a member of is a small community choir. It’s informal, they sing upbeat stuff, you don’t have to audition, and you’re encouraged to move while singing. It’s a different beast to a formal group such as the one I used to belong to (Leeds Festival Chorus) where you have to audition, and while you get to sing some of the great choral works, often in fantastic settings (think, Verdi’s Requiem at the Bridgewater Hall in Manchester, or the Triumphal scene from Aida at the Royal Albert Hall), I don’t think the formality would work with my PD — standing still is sometimes a challenge!