When my meds start to wear off, I start to slump forwards. But we are all different, and for other people with Parkinson’s the slump may be sideways. Find out what happened when Mrs Overall met the Leaning Tower of Pisa.
Six months before my Parkinson’s diagnosis, Robin and I travelled to New Zealand (when we still could!) My one disappointment at the time was failing to complete the Tongariro Alpine Crossing. Knowing what I know now, I’m amazed that I got as far as I did.
Photos of me on that holiday show me starting to slump forward.
It worsened before my diagnosis. People started to notice. Then I took control of my posture and gait, and now I only slump when I’m tired (don’t we all?) and my meds are wearing off.
My brand of lean is forward – think Julie Walters as Mrs Overall or her unforgettable ‘Two Soups’ waitress. For other people it is definitely sideways.
Listing to port
In September I met the force of nature that is Bill Bucklew. Robin and I were on holiday travelling north through Scotland. Bill, from Chicago, was southbound on Day 4 of The Long Walk for Parkinson’s – walking 670 miles from John O’Groats to London, averaging 40 miles a day, in 17 days, to raise awareness and gazillions of cash for Parkinson’s charities. And then, just to cool down, he ran the London Marathon. In under five hours.
When I met Bill just south of Inverness, he was listing very noticeably to port. I met him on a bend, and as I didn’t know him, I thought this was just his regular gait. But his team* had only really noticed it the previous day. He was in a lot of pain and had to take breaks to lie down and stretch it out. In rare moments between walking, eating and sleeping he researched his symptoms.
Adjusting posture
In his blog, Bill talked about Pisa syndrome, and referred to this article Posture and Parkinson’s – ask the expert.
Professor Bettina Debu, a movement expert at the University of Grenoble Alpes, says:
“We’re unaware of it but we are constantly making tiny, unconscious adjustments to our posture to keep ourselves balanced and our centre of gravity in the right place. This control of our posture significantly depends upon the brainstem, a part of the brain that can be affected in the later stages of Parkinson’s. When the brainstem is no longer able to do this automatically, people have to start to control their posture and balance consciously. So often people with Parkinson’s may find they actually need to concentrate on these things.”
The leany-forward thing, at its very worst, is called Camptocormia or (exactly what it says on the tin) ‘bent forward syndrome’. Bill’s side-to-side structural reference was more like the Leaning Tower of Pisa. For him, the lean was temporary but painful and he gradually straightened up as he moved south. His journey took him through Chesterfield, where the church spire has a twist all of its own. By the time he passed my nephew Ben, who was spectating at mile 7 in the London Marathon, Bill looked, according to Ben, “way better than he did in the blog – more like the Shard than the Leaning Tower of Pisa.”
I thought the London Marathon was his big finish, but Bill flew home to run the Chicago and Detroit marathons in consecutive weeks, a schedule that would tax many runners, with or without Parkinson’s. The man is a lean (but not leaning!), mean running machine who works hard to raise awareness and funds for Parkinson’s. I’m so glad I had the chance to meet him.
Coming up
What I want to know is – when PwPs start to lean (in whichever direction) is that preventable? What exercises work best? Time to call in the expert. Next time I’ll be talking to Vicky Knight, neurophysiotherapist at LV Rehab based in Chichester. An accredited PD Warrior practitioner, Vicky often sees people with Parkinson’s who have started to stray from the vertical. She’ll be showing us how to “be proactive about your posture!”
Play > Every which way but loose > Eddie Rabbitt
The one where Clint Eastwood is completely upstaged by an orang-utan called Clyde.
*Shout out to Bill’s trusty support team John and Yvonne MacPhee, Kevin Murray and Jim Kroeger
4 Comments
Di · 5 November 2021 at 7:20 pm
Another great read Ali. As always beautifully written. The spirit with which you deal with your diagnosis in nothing short of inspirational. Wish you had been around when my Dad was aPWP
Walk tall - ParkyTracks · 17 November 2021 at 7:16 am
[…] I blogged last time about the problem of leaning (Every which way but loose) I was writing in the past tense as though my problem had gone away. Clearly it hasn’t. Why? And […]
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Poetry in motion - ParkyTracks · 11 April 2022 at 8:01 am
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