Can I have a rant about exercise claims?!

Can I have a rant about exercise claims - you know the PD Warrior-type claims of ‘this will slow down your parkinsons’ - well how does she honestly know? Really and truly? Where’s the scientific evidence. And of course when emailing her to ask where trained teachers are in London she’ll tell you there aren’t any, because she wants to franchise it and make money from it, and will tell you to go to Marlow, 35 miles outside London, like thats really convenient. I found my own trained PD Warrior teacher who was fabulous, until she moved abroad. We’re desperate to feel better so we will try many methods and I feel exploited.

The conference in Leicester in April - will this just be more claims, feel goodery, and motivational mumbo jumbo by self promoting ‘well-being’ gurus or will it have some real scientific truth and evidence based research and content. Having the disease is enough motivation, I don’t need life coaching.

What REALLY works for you exercise wise? Do you do PD Warrior, for how long have you done it and how many times per week, and do you feel it has and is slowing down your progression? What other exercise works for you?

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I do PD Warrior classes locally and do find them useful but have no idea if they’ve slowed progression. I probably don’t do enough practice at home but do a lot of gardening which keeps me active. If I can’t get out in the garden I do practice the exercises.
Whether or not it slows progression, it certainly helps my mood and makes me feel that I am doing something positive. It is also good to meet other people with PD at the class.

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There’s a problem doing scientific studies over the period necessary to prove the case in people, and there are so many other variables it would be almost impossible. There are studies which show the benefit in a mouse model.
There appears to be some concensus around 2 1/2 hours per week being “good” and there are many other options other than PD warrior. Question is - would you rather do the recommended amount and know that you’ve done your best or skip it, and then always wonder would I be better now if I’d done more? My PwP was never told exercise could slow down PD, only that it could improve balance etc. Well if you don’t have any problems with balance you’re unlikely to want to improve it! We’ve tried to walk a couple of miles everyday, and 15 years in she can still walk two+ miles, although 5 to 10 minutes slower than years ago. Has it slowed other symptoms - I don’t know, and don’t know how she would be if we hadn’t walked a lot.
There’s a review of the evidence of what works in this book :


but it’s highly academic. Available from inter library loans.

I tried PD Warrior classes and didn’t like it - felt it was too regimented almost like being bullied. BUT I now go to Bridge4 Gym Classes in Birstall twice a week and it is brilliant. Not only do we learn serious things like how to get up if we have a fall but, all of us have PD and you are just yourself - we can talk about something that is worrying us and there is always someone who has or knows someone who had that particular PD problem and can talk it out we have a laugh at ourselves but also do serious exercises - plus we have the best PD Physio ever (his name is JD) he is also on the Leicester Parkinson Committee and will no doubt be part of the conference in Leicester in April. I think it is a matter of joining the right gym.

Knowing JD I don’t for one minute think the Conference in April will be about ‘self promoting well-being gurus’ He has worked at LOROS a local hospice and when the need arises is very companionate as well as being firm he knows instinctively when you are down and need a bit of tlc. Like I said exercise is good for you if you get the right class - we all go away feeling good and feeling like we have given the dreaded PD a kick in the pants.

Hope you find one like ours. I have been going for around 2 plus years and find it really helps me.

Personally I think any form of exercise is beneficial. The benefit of PD specific classes are that you are all in the same boat and have similar issues to overcome. So physcologically you don’t feel as intimidated like you maybe would in say a mainstream Pilates class with the fit and healthy.

I dont believe that any specific exercise regime is better than another as we are all different. The main thing is to keep moving

I am 72 years of age , overweight through lack of exercise, and was diagnosed with Parkinson’s in 2010, although I probably suffered with it for 3 to 5 years prior to diagnosis?

Since diagnosis, I have made 7 or 8 new ‘close’ friends, in the age group 68 to 75, each of whom has been diagnosed for as long, if not longer, than me.

We all have the same Neurologist, and he consistently states that my PD has not developed at anywhere near the same rate as the others in my peer group, and the only real difference that he can see between us is that I take a lot more exercise than the others- chair exercise, gymnasium machines, walking football ( with my rollator, because my balance is shot, and I fall without it ), voice exercises, and playing bridge - badly.

Exercise keeps me reasonably physically fit, mentally alert, and I am told that it helps to digest and distribute my medication more quickly and efficiently!

Sometimes, it doesn’t take scientific proof of results, it just takes perseverance to get over the initial reluctance, and if you feel better than you did before you started taking regular exercise, then it works for you, ( as it does for me )!

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Hi Sarah. I asked my neurologist about exercise and progression. His said as we have no marker for the progression of PD it is impossible to say if those who exercise slow down their disease, or if it’s those whose disease is progressing slowly who are able to keep up the exercise. Chicken and egg. Having said that, there is obvious advantage in keeping moving and as fit as we can. Plus all the advantage of meeting others along the way. I found this really helpful as it’s easy for me to get persecuted by the idea that I’m not trying hard enough!

Speaking of my personal experience I suppose I’ve always done something since leaving school - long walks or jogging or push ups or skipping - even a little weight training. There were gaps - some years when I didn’t do much especially from April 2017 when my line manager wanted staff to remain in the office until evening which left me little time to do fit any exercising in. That break lasted until October last year when I had been diagnosed and was on sick leave.
I had noticed that if I sat still for a day I would feel that I had started to seize up. In October I started going for walks of between 2 and 5 miles a day. I certainly stopped feeling seized up. About 4 weeks ago I injured my Achilles heel (new pair of walking shoes which I just might never wear again). Since then I have spent 40 minutes alternating between jogging on the spot and push and crunches and star jumps - every day. I haven’t had a day off since October.
I saw a PD consultant for the first time last week and he said “We have exercise classes for people who need to learn but you would do what the trainers would to” then he laughed and said “You could probably run the course”. It’s impossible to be 100 percent certain if exercising is helping but I won’t be giving up any time soon.
Best wishes to you all!

I have always found the harder I push myself the harder the fall - not sure of the answers?

Of course - what works for one won’t necessarily work for another but I don’t push too hard but jog or walk rather than run and alternate between only 10 push up and 10 crunches and 30 seconds of star jumps and one minute jogging- not forgetting that the first and last minute of jogging should be extra slow and gentle and to include some stretching and several sips of water - almost a sip every minute.
I really am hoping that there will be long term benefit. I have also done a little tai chi and hope to get back into it soon

Can I ask how long it took everyone to get referred as my grandad is still waiting after being told 12 weeks and now it’s 39weeks? My grandad isn’t getting any better, tonight he couldn’t move his legs and had to be guided to his chair. I just would like some answers and doctors aren’t really doing much and nothing seems to be moving forward xx

When my GP referred me to a neurologist I was told that there was a 6 month waiting list but I didn’t wait that long before going private

I only waited three weeks but that was nine years ago.

In South Australia I was told six months if I went private, but as a public patient it could be a year or more - at least. In the end it took three months as a private patient. I was lucky! We don’t have enough neurologists.
And back on the topic of exercise - I’ve been trying to be “vigorous” but ended up with excruciating back and groin pain. I have an appointment with a PD warrior physio in three weeks. She said they can work round my other problems. Fingers crossed.

I used to really enjoy my PD Warrior class once a week until i got sciatica. Sure it was the penquin move that caused it so i have not been back since.

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Immediately after my diagnosis I went from a physically fit middle aged man to an old man who couldn’t see the point of exercise when I was never going to get better anyway. I have been eating and drinking what I want to for two years.
I feel dreadful.
Exercise has been my life before pd. I have to get back to it.
I know I have this mental block about nothing being worth doing because nobody beats Parkinsons but if I can reawaken my fighting spirit I’m sure I can give it a run for its money.

That you have recognised that in yourself is half the battle won. Why not test yourself. Start an exercise regime for say a month and keep a diary of what you did and how you feel before and after. At the end of the month read your diary. You will have some evidence one way or the other as to whether it is helping or not. We may not beat Parkinson’s at the end of the day but there is a certain satisfaction in not letting it take over by giving up. My mantra - I have Parkinson’s, it doesn’t have me.
Good luck - go on, take the first step.

Hi Everyone,
I’ve been diagnosed 3 years but had suspected PD a good 2 years earlier.
I tend to feel the important thing is to make sure you do something. Be it a walk, a stroll, tai chi or follow a few youtube PD exercises. Anything rather than nothing.
I’ve never been a fan of vigorous exercise but have always enjoyed a walk. Now I do tai chi and a few youtube PD exercises as well. It’s easier to do an activity you enjoy than to force yourself to do one you don’t like but feel obliged to do.
I always feel stiffer and less mobile on rare days when I have not exercised at all.
I have no idea whether this will make any difference in the long run but it seems to help me at the moment

Hi Sarah007,
I am not going to claim exercise slows down or has slowed downed my PD progression. What I will say is exercising be that just going for a walk with my dog or light exercise at home (I have always hated gyms) makes me feel good. I do believe by feeling good or happy about myself with all the struggles with PD is good for my mental well being and overall health. So what I would say is give it a go you never know, it might help.

My back was aching and felt stiff yesterday so I didn’t do any push ups. It was the first day without push ups for weeks - I think the back ache might have been caused by my doing so many push ups. However, https://parkinsonslife.eu/video-5-exercises-to-improve-parkinsons-symptoms/ seems to have helped as I felt a lot better soon after doing the 5 exercises