Exercise and Parkinson’s

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.
Tot

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My wife has YOPD, and she is doing online classes with Neuro Heros. The teachers where/are working at the Neurology Hospital in London, so they know what they are doing. We had a personal trainer coming home but that wasn’t good enough as she need very vigorous exercise. They have different levels for different ppl and progressions with online assessment. When doing some of the Power classes my wife is all sweaty. Again this is just my personal recommendation, times might not fit you etc etc but worth checking out and the girls are great.

Thanks for your reply. Any and all suggestions are welcome. If you are not naturally sporty it can be difficult to know how or where to start so anything that may help get someone started is great. I agree the online stuff is useful because it is accessible to all. My personal preference would be online in real time as I think these most closely equate being in a physical class but that doesn’t mean other things don’t work. I hope others will post their experiences of how they got started and how they found what suited them. The more ideas we have the more an individual who is ‘stuck’ may find a way forward. Thanks again, I wish you and your wife well
Totl

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Neuro Hero, is Real Time btw.

Hi Tot
I’ve been trying to ‘up’ my exercise recently and trying to find something I might enjoy. I find exercising on my own very boring and it’s easy to find an excuse not to do it.
Yesterday I went to a Zumba Gold session. While it wasn’t exactly phenomenal and I found some of the moves diffucult, I did enjoy it and found that it increased my heart rate.
I tried to contact a boxing club but am still waiting for them to get back to me. I don’t know if the mention of Parkinsons might have frightened them off!!
I’m going to borrow a pair of Nordic walking sticks that my son in law has so hopefully I might enjoy that although I think I’ll feel a bit conspicuous at first.
Thanks for your posts.

Hello again Alfsnan and good for you for keep trying.
I have recently started Nordic Walking and love it. The technique is not difficult but takes a bit of practice because its not like 'normal ’ walking. It certainly is a good workout once you find your stride. I did feel a bit conspicuous to start with but concentrated on what i was doing and tried to ignore everyone, and it quite quickly ceased to be an issue. If you enjoyed Zumba Gold why not give it another go, some of the moves are bound to be difficult to begin with but you will get the hang of them and think what an achievement that would be. Also if you go again it will be more familiar to you and that you feel more comfortable so enjoy the session more. You might want to take a lookat Mikey.inc’s suggestion above ie Neuro Heroes.
Most areas have health walks have you had a look at that?
Let us know if you hear back from the boxing people.
Tot

Hello Tot,
What an inspiring piece, it could have been written about me (except getting a personal trainer before lockdown). I’ll see if I can arrange someone who will come and help me and my wife. Thanks for the positive vibes
Neil

You’re very welcome and I’m glad you found it helpful,
I wish you every success in your quest to find what suits you. Let us know how you get on.
Best wishes
Tot

Hi Tot, as always your posts are very uplifting. I have recently had the opporunity to try a few different classes and would say if you are able to give it a go, doesn’t matter what it is, try something new you may like it! First class was over 50 keep fit but found after half an hour I was bored with the repeeated sequences and my co ordination was out of sync, so was always a couple of moves behind, it was okay but wasn’t in a rush to go back, another day I tried a new yoga class, the breathing and relaxation was good but do this daily at home anyway on CALM app and meditation, I found some of the positions in yoga made me a bit wooshy (is this a real word? lol) I have low blood pressure so coming up out of a position left me somewhat of balance. Another day another class this was strenght and balance, the majority either seated or with the use of a chair and some resistance bands, this was the one for me! If I could offer any tips it would be try it, if it works for you you will want to go back! I have also found since that I have tweaked my home exercise routine in a morning to include some of my new learning and feel this is making a difference. Keep moving and keep :smile:

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Excellent post AnaElsa. you have done exactly what i hoped when I wrote the post ie you gave a class a go, identified why it didn’t work for you, you didn’t give up and tried a different class. If you can identify the barriers or obstacles that prevent you accessing a clsss or why tha class may not give you what you need then you are focusing your thinking in much the same way as I did. It also illustrates the need to consider very broadly what the obstacles are. You were able to get to several classes easily or relatively so it would seem. For me my ,location is a significant factor in deciding if the activity will be of benefit if the journey is too complicated or time consuming or is it perhaps worth the taxi fare one or both ways.
There is actually much more to perfecting an exercise regime you can maintain and benefit from, in my opinion, than simply saying exercise is important and find something you enjoy.

Hi Tot, totally in agreement! :smile: :santa: :santa: sorry couldn’ resist the Santa!

Hey testing here

You made it onto the forum, a warm welcome to you.
Tot

Hi welcome, test post works :smile:

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You might like to check out https://www.reachyourpeakonline.com/ - An online exercise community for people with Parkinson’s. It’s UK based and they change the routines every 2 weeks - there are live classes and talks etc

Thanks, have you or do you know anyone who has taken part, I like the idea of pre recorded sessions so free to do them when I want to rather than a set time each week. I would be interested from anyone who has started this and how they are finding it? Thanks :smile:

Have been doing Reach your peak for nearly two years and find it excellent.

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Hello Tot,
Thanks for your informative piece.
My first approach to the doctor with my symptoms resulted in the advice ‘Physiotherapy is what you need.’ (The real diagnosis came ten months later)
So I took it to heart and joined a gym. I do a weight/cardio routine of 45 minutes three times a week and it has worked wonders for my physical and emotional well being. I should add that I’ve just turned 85 so the ‘never too old’ fits me well.
I do have one advantage. In 1987 I qualified as a personal trainer and was heavily involved in the health and fitness industry for many years.
My advice to any would be exerciser is do what you enjoy. Life’s too short to do things you don’t like.
And finally. Is your username an ironic play on words? If so, good one :slight_smile:

Thank you for your comments and what an interesting background you have. You’re quite right you need to find something you enjoy but my point is that is easier said than done in some cases. There are many obstacles and barriers to most things and exercise is no different but you need to recognise what they are and what options are available to you. I have been working with my trainer for just about a year and has made a huge difference to me but as you will have seen from the article it took some sorting out.
My username is nothing so clever as an ironic play on words, sorry to disappoint you. My Mum had an Aunt May who everyone knew as Tot, Mum doesn’t know why. As a child the name appealed to me and it came to mind when I had to think of a user name.
Long may you continue with your gym routine, that is serving you so well.
Best wishes
Totr

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Hi everyone
Ive taken on board how exercise is supposed to help and have so far tried exercising on my own at home (boring but doable), Zumba Gold (jury’s out), powerhooping (good fun, keeping this up but not the hoop!!), boxing (great, definitely going to pursue this), indoor bowling (very enjoyable, social and quite a bit of walking up and down the lanes, staying with this). So, all in all, I’ve found a few things that I enjoy and will continue with. Ive borrowed some Nordic walking poles so that’s the next possible new venture.
Ive never been very interested in exercise but now needs must and I’m finding it all fun and enjoyable and have met some lovely people too.
Linda.

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