Be warned you might want to make a cuppa before starting this, it is quite long !!
Physical Activity and Parkinson’s
I am writing this just to tell of my own experiences and what I’ve learnt from others on the forum and for no other reason than it may help someone move on if they are stuck or for general interest. It is only my view and does not necessarily match your own experiences and you are of course at liberty to disagree, none of which invalidates my personal view.
Early days. As soon as you receive a Parkinson’s diagnosis the need for physical exercise and activity seems to come at you from everywhere. It’s not untrue of course, indeed it is important to all but unless you are naturally sporty or have a hobby involving physical activity it’s not that easy. Most people have at one time or another made a new year resolution to get fit and how many fall by the wayside after a few weeks. Parkinson’s doesn’t suddenly change this and there is a risk of crashing at the first hurdle.
Doing It Yourself. I did quite well early on, I kept up the walking I’ve always done, had a few bits of cheap kit and did something most days but I knew it wasn’t enough. I got bored with it and it was too easy to give myself a reason not to, which was really an excuse.
Find Something You Enjoy. Is always the advice, again easier said than done, where do you start?. My location proved to be a sticking point. I no longer drive so need to rely on public transport or the goodwill of friends - and I couldn’t expect them to commit to a lift every week to go to a class. Almost always I have to get a bus or train to the next town before I start. The next town does have a sports centre with quite a lot going on but buses are once an hour or an approximate 40 minute walk each way, I tried a few things but getting there and back was exhausting and I lost most of the benefit of the class.
I tried online classes the most successful being the ballet class for people with Parkinson’s run by the English National Ballet and was live, in real time. There are lots of good videos but many seem to ake a long time to get going and I would get bored. These sorts of things make finding something you enjoy possible but not always easy to sustain because of issues such as I had. There could also be timing issues, the day of the class doesn’t suit, and so on.
The next step. I began to realise a few years ago that I needed to try something different as my exercise regime was failing miserably and I was losing heart. So I took the bull by the horns and booked a weekly 60 minute session with a personal trainer who had a gym about 15 minutes walk away. I was nervous because I didn’t know how I would feel having someone’s undivided attention for 60 minutes but it was fine, he put me at my ease I was making progress then in mid 2019 a series of unexpected events lasting more than a year and including the lockdowns
everything stopped including my exercise routine.
Changes I made in 2021. It was almost 2 years before I was in a position to look again at my exercise routines but this time I took an entirely different approach. I made notes about any and every thing I had done or tried ever and any and all issues Parkinson’s brought to the table that complicated things. It wasn’t easy to do but it gave my decision making a focus I didn’t have before… The sorts of things it identified were
Pre diagnosis location wasn’t a problem because I could drive but now it was a significant factor.
Pre diagnosis at various times I had done tai chi, yoga etc which I enjoyed but if the group was too big the teacher never really corrected positioning and if near the back I couldn’t always see clearly what was needed. I knew I needed someone to check what I was doing.
Pre diagnosis I had tried various gyms but never felt comfortable in that environment.
The list was quite long but once I’d arranged it in two piles of what would or may work and what definitely wouldn’t one thing stood out head and shoulders above everything else. I needed a personal trainer who would come to my home and that is what I’ve done.
The result. Claire has been coming to me for almost a year. She knows about Parkinson’s and has others on her books with the condition. She herself lives with a chronic condition. Her sessions are well organised, relevant and varied. I have gone from 2 x 30 minute sessions pw to 2 x 1 hour. My core muscles are stronger, my balance is better and she is slowly but surely moving me forward. More importantly I look forward to these sessions and as I said, they have been constant for the last year. Of course it’s not a cheap option but the difference to me is massive so is worth the money. I recently updated my review and wrote this;
……given me renewed confidence in my abilities
Claire’s input has given me the best possible chance to remain as independent as I can for the longest time and manage deterioration in a positive way; given my circumstances, I could not give a better recommendation
If you are struggling to find what you enjoy or have plateaued maybe an approach similar to mine may get you started and .lead you hopefully to do something regularly and importantly, enjoy.
Every success to all who are struggling to find what suits them. It’s wonderful when you finally find it.