Yesterday, I started the PD Warrior programme. It's a combination of intense physical exercise and mental exercise. It originated in Australia where it's had promising results. You can google PD warrior and a lot of info will come up.
I live in the UK and I managed to find a hospital a couple of hours away that has a private physio clinic with staff who have trained in this. Yesterday consisted of an assessment plus a long session with a physio to show me the exercises. I now try them out for two weeks, then return to check I'm doing them properly. After that, I do the 'ten week challenge' for, er, ten weeks.
Some baseline measurements were taken in terms of balance, dexterity and so on, and these will be reassessed as I move through the programme.
This isn't intended to replace the 'usual' exercise programme of cycling, weights etc that I do in the gym, but to stand alongside. I have to do it everyday for about 25 minutes.
It was a very tiring day - the assessment and session with the physio took two hours, on top of four hours travelling and I'm tired today. But cautiously optimistic! I'll keep you posted on progress. Before my PD diagnosis I was very unfit. I'm no athlete now - my endurance is rubbish. But I'm much fitter than I was. Life is strange.
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stevie3
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That's great stevie, I hope to start the programme soon too.
"Neurologists and other health professionals are referring to PD Warrior as a game-changer and, since its launch in Australia in 2012, it has grown exponentially, with extremely successful outcomes and widespread popularity. PD Warrior is not a cure, it's your chance to take control"
Scarf snatch is great for the hand/arm thing and Over the River and TahDah is for gait. I follow the sequence as set out on the video in the link - I've seen massive improvement in my posture and the way I walk. I see the physio every few months - not many in the uk are trained and I have to travel some distance. I'm actually seeing her on Friday so I'm interested to see how she feels I'm doing.
Thanks so much for that. The trouble is my husband is still in denial really even after a year and so doesn't think it's necessary. It s not easy! If he could accept it it would be so much easier! I know it's tough though
Actually, I find denial can be quite a useful coping mechanism! I read in your other post that your husband is CEO of a large company - I'm CEO of a small one and I'm able to arrange my time/travel to quite a large extent. I've also chosen not to go public at work with my condition at the moment - I've also got a dodgy back so if I'm a bit stiff I blame it on that. I'm 58 and I hope to work for some time to come but I pace myself.
That s so true Stevie. My husband Andy is paranoid about someone finding out and it s a really hard decision as to whether you should say anything or not. I guess he s scared on several levels. He doesnt want pity and he s also an incredibly strong man who is a born leader. I think it will kill him if he has to stop work. having said that, he s now 10 x better than this time last year when he was diagnosed. That was just terrible. Now he s beginning to accept it he seems calmer and more at peace. it s not an easy thing to come to terms with though. He also has a really bad back. He s got scheuermanns disease which is basically a hunch back which he blames for his tiredness etc. Actually he doesnt suffer from fatigue - yet! He s only one year in though. What about you. How long have you known? I ll tell him to pace himself. I ve done loads and loads of research on various things eg supplements , treatments etc so i d happily share them with you are interested. Im Google queen! By the way Im British too, then moved to Sydney 20 years ago....
Can you also tell me about Mucuna. I ve read about it but not sure of the dosages etc. How does it help? Do you take other supplements? Sorry for all the questions!
Hi Stevie3 - my husband has PD been diagnosed 3 years, he is 52 and we have a 4 year old son. Where is the physio that you go to see, we live in London. I would love him to start PD Warrior
Hi I live in SE London and have been reading about the PD Warrior programme. Could you tell me where you found the physio in London who knew about this. Thanks I have PD but am still quite active but have developed some pains and discomfort and would like to try this programme.
Hi. The physio wasn’t in London, she was in Salisbury! I went to see her three times and she showed me the exercises. I also have a dvd with them on. I really wish there was some kind of class on London/nearby but I’ve never been able to find anything.
There is a cost to it as well and while you can do it on-line, it's quite expensive doing it that way. All I'm paying for, however, is a few sessions with a physio, which is very affordable. She gave me the manual with the exercises in, took me through them and I've a follow up in a couple of weeks. I was surprisingly tired today. I'm going to start on Saturday - I've had to clear a space - and I have to record what I do. I will keep you posted on progress.
stevie3 that all sounds promising. I've looked up PD Warrior online but didn't realise it was available here in the UK. Where is the centre you attend? We are in Hampshire. I'd love my husband to start a program like you're doing but he can usually only manage about 10mins exercise per day + a Parkinson's Pilates class for an hour once a week so he might find it a bit too strenuous. 😊
Email I recieved from PD warrior at Salisbury might be useful for you as you are in Hants
We've been building up our programmes for people with PD over the last few years. Currently we offer a range of input, from one-to-one appointments to group work.
We find the groups work particularly well to help motivate continued exercise which is an important part of managing PD symptoms. We run 2 types of group: The PD Warrior Programme for people recently diagnosed or who have mild symptoms, or the Striders group for people who have some balance problems, for more severely affected people we recommend one to one input.
Whoever you are we would always carry out an assessment and then 3 one to one appointments to ensure we find the best approach for that person.
We are not an NHS service so there is a charge for these appointments. If you are a member of Salisbury and District PD society they cover the cost for the Assessment, 3x one to one appointments, and a 10 week exercise programme.
Please feel free to come back and ask more questions.
Well done you for taking control and doing something positive.
I think the PD warrior programme is excellent and hope that Parkinsons UK take it onboard and encourage Parkinsons groups andParkinsons nurses to get involved in getting people trained to teach the exercises so that it is more accessible .
Keep up the good work I know you will improve and ENJOY,!
Too early to say - I've only been doing it a week and I'm just learning the exercises. I go for a follow up next week, then I do the 'ten week challenge', at the end of which they will do an assessment and make comparisons with the baseline measurements they did at my first appointment. So it is evidence based and measurable. I also think just knowing that I am doing something to lush back is a great boost mentally. I'll keep you posted as there seems to be a lot of interest in this.
I don't know the program, but the approach and benefits sound similar to rocksteadyboxing.org that demonstrated similar results a decade ago with their innovative program. (I know. I was there.) There are more than two dozen programs in CA and nearly 300 world wide. The best program is the one you will stay with. Keep moving. #rocksteadyboxing
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