Exercise and Parkinson’s

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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Hello Alfsnan you have been busy and was delighted to read you have had some successes. Great news.
Tot

Hi everyone, It’s great to read all your stories about exercising with PD.
I was diagnosed about a year ago and was lucky enough to be cared for here in Guernsey by the brilliant Parkinson’s team. They referred me to the neuro physiotherapists who over several weeks taught me the PD Warrior exercises. There is, they say, strong evidence that this Australian programme slows the progression of PD. It integrates movement, strength, coordination and voice. It’s not particularly strenuous and you can do it indoors or out… You can find videos on You Tube.
I was also referred to the Speech and Language team who taught me exercises to strengthen the voice and gave me an Expiratory Muscle Strength Training gadget that you blow into against a resistance. You can feel the strength improving as you work through the course.
My PD symptoms are so farl fairly mild so I am still able to run up to about four or five miles, albeit at barely above walking pace. Long distance running has always been my thing (Once got under three hours for the Marathon) so I won’t be giving that up as long as I can shuffle along.
So I’d say based on my limited experience, do whatever exercise makes you feel good, and build in a variety to your programme

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Kindly note I took down my original post as somehow it got mixed up with existing posts and didn’t make sense so this is a repost that I hope will be in one piece - in case you were wondering what had happened lol

Hello All - I see this as my last post on my experience of trying to find something I enjoy - the frequently repeated advice with regard to the importance of physical exercise in managing Parkinson’s. I see it as my final post because for the last two years I have had a regular physical exercsie regime and can now safely say I have found that elusive ‘something you enjoy’ and the benefits to me have far exceeded any expectations. So this is a conclusion to my experiences which I hope will be of interest. As before it is quite long so as usual I suggest you make a cuppa before you start!

My Personal Trainer and Me

Introduction

One of the first things you learn when diagnosed with Parkinson’s is the importance of physical exercise and the advice is simply ‘find something you enjoy.’ I have written before of my own experience of trying to find something that I would enjoy and more to the point, stick to and which also noted some of the barriers that made this difficult. As some of you may know if you read my posts, is that my solution to the ‘exercise is important’ mantra ’ has been to work with a personal trainer. I thought it may be helpful to others to hear a little more about my own experience on the basis it might be something some of you consider or have an inaccurate view of what this means. Obviously I can only tell you of my personal experience but hopefully it will be of interest. I am starting from the point I started to work with a personal trainer because as I said, I have previously talked about getting to that point.

I have now been working with Claire for two years. Over that time we have steadily increased the number of sessions I do and from October I have been doing 3 x one hour sessions per week.

I fully accept this is not a cheap option, although compared to some her rates are good, and most of my PIP (Personal Independence Payment) is spent on Claire’s fees. I see this as using this benefit for its intended use ie extra money for the extra costs involved in having a disability - for me this is mostly a prevention or protection ‘extra cost’ as I am hoping it will mean I can continue to have an independent and fulfilling life for as long as possible. There are no guarantees and if this proved not to be the case, so bit it - I would have done what I could and I can be content with that.

Common Myths

Personal Trainers are like Army Drill Instructors. Some probably are and that would suit some people. The truth is there are many different styles of personal trainer; you need to understand what type you are most likely to respond to and use this in your search.
Personal Trainers are little more than a status symbol, something to show off about. Again this may be true for some but certainly not for me. To me having a personal trainer is the key to why I am making the progress I am (more of that later.)
Personal Trainers are expensive. They can be but if you look at it in terms of value and benefit rather than stark cost you may view it differently and you are the customer buying a service so you do have a say in how sessions are organised and any good personal trainer will understand and respect that. If you can only afford one session a week then that’s what you book, if you want to address a particular issue book that, if you want one month intensive input to kick start your exercise routine book that etc. The average price seems to be between £30 - £50 p.h

There are probably others but these are the ones I most commonly hear. My own family and friends would tell a very different story - they have seen the difference in me.

General Points

It can be hard to find a personal trainer unless you know someone who can give you a personal recommendation and even then just because he or she suits X, it doesn’t necessarily follow that person is right for you. Below are a few things you may wish to consider before committing yourself to any type of contract.
Trust your gut is a much used expression but there is quite a lot of truth in that - you’ll not necessarily be able to explain why, but if you are being honest with yourself I think trusting your gut is not a bad way to start.
Having said that, I think that trusting your gut is only one element and should be supported by other considerations, for example
Check their qualifications - they may be a qualified personal trainer but do they have additional qualifications in the area of disability / rehabilitation. Was an initial form completed to give an agreed baseline, aims and objectives. What is their knowledge of Parkinson’s like (not necessarily essential if they demonstrate a willingness to learn etc.
Don’t over commit at the start. Claire offers 30, 45 and 60 minute sessions - I started with 2 x 30 mins pw. She charges £35 ph but you can save by booking a block of 10 which works out at £30 ph. For the first month I paid for each session each week so that I could be sure she was the right trainer for me. After that I booked blocks of 10.
Obviously it is a relationship that develops over time, but the personal trainer should be able to put you at ease from the beginning.
Honest communication is essential especially with a condition like Parkinson’s which can be so variable.
The routines and exercises you do should reflect your aims and objectives - if this is not clear always ask what the purpose of that particular exercise is.

Key Points and Benefits

The key word is personal - the sessions are about the individual’s aims and objectives. Although other elements have now been added, my early aims of core strength, balance and mobility remain as central tenets to my sessions and are easily seen in my sessions even though many of the actual exercises have become more complex.
Having the undivided attention of a personal trainer has brought me results I never got from general fitness classes or public gyms. Claire ensures I am doing the exercises correctly but more than that, she can design and grade my sessions appropriately as my fitness has improved eg changing the weights or resistance level.
As we have got to know each other and she has seen me on both good and not so good days, she has become very aware of the sorts of things I find hard and these have been incorporated into my sessions. So for example we may be working on balance but this will be within a multitasking exercise.
She and I have also worked on specific elements such as stiffness in my ankle joints and more recently intensive work on my long standing tendency to lean to the right.
Claire’s sessions are varied, sometimes she will bring a piece of equipment from her home gym - a step, pilates machine, a rower and so on, sometimes we do yoga or concentrate on stretching stiff areas, she has taught me to do nordic walking - now an important part of my routines, and at my request some time ago we started to increase the cardio exercise element. By so doing she keeps my interest and motivation.
We are able to discuss any issues or concerns I have noticed and these are reflected in the sessions Claire plans. She never says no. If I indicate an interest she will make it happen although it might take some time to achieve it. ( Although it is possible to see some change quite quickly, I see having a personal trainer as a long term investment with slow and steady improvement that can be maintained rather than a quick fix.)
Progress has been steady over the course of the two years but results can be seen after just a few weeks and that in itself is a great motivator and encouragement to continue.
The biggest benefit to me however was not expected. It is the change in my mindset. At the beginning I was only really looking to maintain the functional level I had. That is no longer the case - now I am looking to improve and have far exceeded anything I expected when I started working with Claire. I am physically fitter than I have been in years, my core, balance and mobility have all improved, I am much more self aware of when I am not moving correctly. and whatsmore, the difference in me is noticeable to family and friends.

I am not suggesting that this route is for everyone but I can tell you absolutely it is the best decision I have made not only for managing my Parkinson’s but by proving to me I can still achieve and meet new challenges even when living with a chronic condition for which there is no cure. That is indeed a powerful thing to know and I don’t believe I would have come to realise that without the decision to go with a personal trainer. I have also finally succeeded in achieving what at times seemed impossible and included many false starts ie I have found a way of making exercise a regular part of my week and have met that frequently repeated advice ‘…find something you enjoy.’

To all of you out there still searching for the exercise regime that will suit you and help manage your Parkinson’s I would say don’t give up, keep searching there will be a way for you but you need to be open minded about considering all options - and if you have not considered it before, it might just be that a personal trainer is the answer for you too.
Tot

I remember when my brother got diagnosed and suddenly it felt like everyone and their grandma was recommending some kind of physical activities. I mean, walking’s cool, but it gets old real quick, you know? And joining classes or hitting the gym? Yeah, not my bro’s cup of tea either.

So, he tried the whole online class thing, and props to the English National Ballet for that Parkinson’s-friendly ballet class. Live and real-time made a huge difference. But, man, the struggle with buses and trains to get there - exhausting, right?

Hello grozavoron
That was precisely my point when I started this thread. Finding something you enjoy in terms of exercise/physical activity is what we are continually told. Not only is that not always easy to do, I mean where do you srart if you are not a naturally ‘sporty’ person but over and above that are the barriers that can make this difficult - and as you so rightly point out just getting to a venue and back can be exhausting if reliant on public transport. My solution has been to have a personal trainer come to my home. That has proved to be an excellent decision for me. I hope your brother will find a sustaibale form of physical activity and wish him luck in so doing.
Tot

Hi All,

I run a boxing class, via my local group Redbridge &. Epping Forest Group, my details are on the Boxercise | Parkinson's local support finder

Having taught martial arts/ boxing for many years (35) I adapted sessions for PWP.

Wherever one goes always check safety and there knowledge of the condition we have.

I have been to other London groups and delivered demo sessions, I have also been to see other group sessions and seen some not so good practice.

Aswell as the physical aspect the social interaction is very important.

My sessions include the 4 main elements:

  • Balance
  • Strength
  • Cardio
  • Flexibility

I have what in Pro Bas Bloems words is the ‘Optimistic’ gene.

Happy for anyone to PM for any advise I can offer.

I can be followed on social media Dopamine_Warriors

Hi Tot,
Enjoyed reading your post. Thanks. I have joined quite a few exercise classes: Pilates, Tai Chi, dance and Yoga and get a regular class with a personal trainer. I noticed and improvement in mobility and feeling good over the past few weeks. Most of these classes close down over Xmas so its been a bit quiet. I am trying my best to keep it going which is not totally successful. Sometimes you don’t like going to a class and fight against it but force yourself to go and are glad about it afterward. I will be happier when my classes are running again in early January. All the best.

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Hello HappyMondays
It was nice to hear you enjoyed my post and it looks like you have got your own exercise regime sorted. You are quite right, sometimes it does take a bit of effort to get to a class (and all too easy to give yourself a reason which is really an excuse not to go) but you do always feel better if you do make the effort. It is also true that it is harder for most people to keep things going on their own - as you have found when your classes closed down over Christmas. One of the main advantages of having a personal trainer who comes to my home is that it is a fixture in my diary, so however I’m feeling she comes so I do it and I don’t have to think about how to keep things going on my own because she has planned it all lol.
I wish you continued success with your exercise regime in 2024.
Happy New Year
Tot

Hello again
I came across this last week

and thought it worth bringing to the attention of people on this thread particularly although I hope others will pick up on it. I have tried various YouTube videos but don’t generally go back to them as they tend not to hold my interest that well - some are too complex, some seem to take an age to get going, some have good exercsies but I lose interest with too much chat in between and so on, some I just find a bit boring etc - in other words they just don’t suit me for one reason or another. Not so this one. Since finding it I’ve done it every day on days when I have not had sessions with my personal trainer and I enjoy it very much even when pn my own. It lasts about 40 mins. The lady’s name is Lauren Lewis of Power for Parkinson’s Move & Shout and I have since discovered she has loads of videos on just about every subject yoiu can think of in relation to Parkinsons and exercises. She has an easy presenting style, builds up the exercises over the course of the video and you can easily do them at home. I shall be looking at others to ring the changes. If you can’t get going, are looking for something specific, looking to try something different or are just curious I would encourage you to look at these videos. If you put lauren lewis exercises for Parkinson’s in the YouTube search you will easily find her. If you do give it a go I would be interested in what you think.
Best wishes
Tot

Hi Tot just watched Lauren’s video that you found, its amazing I have been going to a Hall up in Eastwood Nottm it is called movement class by Nigel, and most of the exercises you see in move & shout we do, and you do feel better after, Many thanks for bringing it to my attention.

She’s got a whole load of videos mary1947 and I use them on days I don’t have my personal trainer who also rates her videos highly. Glad you found the link helpful I hope the videos help.
Tot
PS please spread the word where applicable sometimes it’s hard to know where to post something and I do think these are worth knowing about

Have you considered Tai Chi or Qigong? No getting up and down like yoga, and should have very varied movements.

Hi Tot yes I think these workouts are great, even my husband is now doing these and for anyone who reads this. Do have a go you have nothing to lose,

Thanks mary1947 I am so glad you are finding them useful and your husband joining in is a bonus indeed. I am so glad I found her videos it means alongside my formal sessions 3 x pw on the other 4 days I now do a Parkinson’s specific video and, whatsmore enjoy it.
Tot

Morning Tot not in the right place for posting but have sent an email to the forum staff, Just have had e-mail about AA could be brought up to date eg with PP plus!! so if you are retirement age and have a disability you will be able to claim eg for car allowence.

Hello Mary 1947
Just wondered how you were getting on with the exercise videos. Tried a new one today, her first of 2024 apparently. It’s quite a challenge lol. Hope you are finding them as good as I do and hope you are keeping well.
Tot

Hi Tot mobility getting worse, but still doing exercise, maybe not quite as the videos shows but hanging on in there.Will take a look at other exercise’s all we can do is our best, but i am still here.

Hello mary1947
Sorry to hear you are struggling a bit more but not surprised to hear you are hanging on in there. As you say all we can do is our best and you are continuing to do that as you always have. You don’t shy away from being honest about how your Parkinson’s is affecting you nor do you stop trying to find ways to live with it that gives your life some meaning and quality. That’s not an easy balancing act and you have my absolute respect for the dignity and tenancity you have shown in managing your Parkinson’s and for the empathy you have for others in your replies on the forum. I will certainly be taking a leaf out of your book as my own Parkinson’s progresses.
Tot