PMR-Specific Exercise Leaflet: Call for participants

[NobleGoodHero]

Are you interested in exercise and Polymyalgia Rheumatica (PMR)? Would you like to take part in a discussion to design a PMR-specific exercise leaflet? This work has been funded by PMRGCAUK and we are looking for people with experience of PMR to tell us what they think should be included in this leaflet. We are holding an online focus group discussion on the 17/7/23 from 1730-1830hrs. If you’re interested in taking part, please send me a message. Thank you.

[DorsetLady PMRGCAuk volunteer]

hi

You have touched base with me before - but it might be useful if you added a bit more information [as you have in a reply to another post ] about who is leading the research and your role in it.

Just so other members have a bit more information.

Thanks.

[NobleGoodHero in reply to DorsetLady]

Thanks, Will do. Do you know anyone who will be interested. I have put Dr Anne O' Brien's name as the chief investigator and I am the research assistant. My role is to facilitate the focus group discussions

[DorsetLady PMRGCAuk volunteer in reply to NobleGoodHero]

I'm sure there will be plenty - it is a subject often raised on here... and we do have some members who are physical therapists...

It might be worth asking one of the Admins to add a post about it - have linked them so they will see this

Fran_Benson

Hidden

[NobleGoodHero]

Thanks. Candy knows the project has just received ethics approval.

[DorsetLady PMRGCAuk volunteer in reply to NobleGoodHero]

Just seen your comment re PMR based, so no point me joining -had GCA not PMR -but will interested in results.

[PMRpro Ambassador]

I'll happily join you if you need another body and a lot of experience!

[NobleGoodHero in reply to PMRpro]

Good morning PMRpro. Please email me [e-mail] so that I can provide you the full details of the study. Are you ok to join on the 17/7/23? Thanks so much for your interest.

[Flutterbies57]

I am interested in what comes out of it , but I have a couple of other problems which also affect my mobility. I would try something new tho because I never know which problem is causing the mess I am in .

[NobleGoodHero in reply to Flutterbies57]

Hi Flutterbies, thanks for your interest. We will keep you posted on the outcome of the study. Take care.

[Sophiestree]

Is it just for PMR or can GCA/LVV people join?

[NobleGoodHero in reply to Sophiestree]

Hi Sophietree. Yes, this is PMR specific. Take care

[Lclmlbls]

Sadly I’m not in a position to contribute as I have no experience or qualifications in this area. I would though be very interested in the outcome and look forward to seeing the end result. I’m sure many other sufferers would be too.

[NobleGoodHero in reply to Lclmlbls]

Hi there. Will keep you posted. Take care

[greengages]

I teach Iyengar yoga and would be interested. I’ve found the yoga helps enormously but realise we are all very different and that I’ve practiced and taught for over 30 years which obviously will make a big difference

[NobleGoodHero in reply to greengages]

Hi Greengages. Thanks so much for your interest. Please email me [e-mail] for link to the focus group discussion and a chat regarding participation. Looking forward to meeting you online. Queenie

[greengages in reply to NobleGoodHero]

Hi Queenie, have sent you my email address for the link, looking forward to the discussions

[PMRpro Ambassador in reply to greengages]

I did Iyengha yoga as an absolute beginner during the years I had undiagnosed PMR - together with aquafit first every day, Pilates on other days and a lot of blocks I credited it with keeping me functional, Really missed it when I moved here.

[Oldfogie]

I’ve been coping with PMR for almost 3 years. This website is wonderful! At one stage my consultant suggested Physio to try to ‘keep me going’ but it was clear not many have any experience with PMR and I had to give up on it as I didn’t have the energy. I was very active before PMR but a physical wreck now! I did find some very basic help on line but it is an area where there is a huge gap. I wish you luck and hope you and your helpers can devise a help sheet or video which can help us all. Keep us posted and thank you!

[NobleGoodHero in reply to Oldfogie]

Good morning Oldfogie. It would be lovely if you could take part in the online discussion. Please consider emailing me [e-mail] for more information and an informal chat. Take care. Queenie

[bussell]

What a great idea. I have no expert input to contribute, but I am very interested in keeping as fit and active as poss for as long as poss (83 now and hope to be around for ages yet!). So good luck and please keep us posted.

[PMR2011]

I am happy to join also if it’s okay to have a US participant.

[emsscot]

What a great idea! I'm pretty much a newbie - diagnosed in February 2023. Like most people on here, I used to be very active. I started Pilates before I was diagnosed and blamed the exercises for the pain in my neck, shoulders and arms. Walking is all I do these days because, presently, I don't have the energy to exercise the way I used to but I'm very interested in keeping fit. Please keep me informed. Thanks so much.

[PMRCanada]

I would certainly be interested if you are welcoming international participants. I’ve had PMR 5+ years now and have participated in a range of physical activities geared to my current abilities during that time. What a wonderful project!

[NobleGoodHero in reply to PMRCanada]

Hi PMR Canada, Please email me [e-mail] so that I can send you the link to join. The discussion is scheduled for 17/7/23 starting at 1730, ending 1830 UK time. Speak soon. Queenie

[Mayadill]

Hi, heroic one! I was a research assistant once. I know we're all heroes.

I think I’m an interested observer here. My mobility problems aren’t related to PMR. Other than a) in flare and b) taking that bit longer to bounce back, but not really that long because I only ever over-do it a little bit and nothing physically arduous because of said other probs, I don’t think I have any mobility problems related to PMR.

I understand of course that the condition of a PMR and Pred soaked body may require expert input but my concern here is piqued by lclmibis saying she didn’t have experience or qualifications and bussell saying she has no expert input to contribute, and it’s this being led by those whose view of exercise is perhaps more structured than that of others of us, what one might call professional exercisers.

I used to be a great walker. Once when working at the Royal Free in NW3 one summer evening I walked all the way home to Richmond across Primrose Hill, across Regent’s Park, down Baker St, across Hyde Park and Kensington Gardens, about 12 miles in all. I have spent half my life walking round and across the 2500 acres of Richmond Park. I have holidayed hiking in the Highlands, climbed to 2000 feet down the other side and on across the heather to the next town. I have never in the whole of my life had an exercise regime. I have never been to a gym or any kind of exercise class.

These days my rollator and I potter around the neighbourhood. If my legs feel a bit stiff I stretch and bend them a bit, vaguely the exercises on the Versus Arthritis site. I do exercises with absolutely no regularity that I think of myself as having made up but probably someone else made them up years ago, such as sitting back, putting palms together, extending arms and ‘doing breast stroke’. I move. The enemy is not moving, not not working out.

[NobleGoodHero in reply to Mayadill]

Hi Mayadill, email me for more information which may help you consider whether or not you want to join the online discussion - [e-mail]

[pmr_nikola]

I would be interested in participating if international members are permited. My background: Had PMR between 2015 and 2022. I exercised before PMR ( triathlons) and continue exercise with PMR. I have kept good records on how much I exercised and at what intensity level and difficulties I encountered. Let me know if I can help.

[NobleGoodHero in reply to pmr_nikola]

Yes, please. Send me an email [e-mail] for link to join the discussion. Thanks for volunteering to share your experience and contribute to the formulation of a PMR -Specific exercise leaflet. Queenie