PMR/GCA in Canada

Sorry, I left the group several months ago so I can't help. I was never really involved in the setting up of the group - my committment really was only to spread the word so they could get a critical mass of people so it could become useful. I do, for some reason, still get updates for my yahoo groups and so I did note the other day there seem to be 62 members.  I suggest you post a separate post asking this question and probably there will be an active member who can help you out.

Cheers!

Thanks so much for your prompt reply.  I am unable to post on the forum until I am approved for membership - so can't ask any of the 62 members of the forum.  I somehow get the feeling the group is no longer viable - they certainly are no longer actively recruiting new members or I think I would have been responded to.  I probably should just give up -  I have joined a UK forum (which has been very helpful) but thought it would be great to have a similar support resource in the US. One last question:  Do you have a name/email I could contact that might know the status of this group?  Thanks so much for your help.

Hi - Please disregard my inquiries regarding PMRUSA - just found out I have been approved for membership.  I really thank you for responding to me and trying to help.  Much appreciated.

You must be on HealthUnlocked?  I have found that between this forum and HU I get all my needs met, other than the comfort of having an actual physical nearby support group.  You'll find that many of the same people post on both forums, but HU is, as you've no doubt discovered, much more free about allowing links, etc.  The administrators do still keep an eye out for scams, etc, but it's not as strict as this one.  On the other hand I think there are more people here, and the organization of the site is more user friendly.  

Yes I am on Health Unlocked - it has been very helpful since I am newly diagnosed with PMR.  Lot of member expertise.  By the way, what group is this?  I only came upon this forum because I was looking for some answers regarding PMRUSA.  Is this a Canadian forum?  How long has this forum been around?

By the way just briefly went on PMRUSA - doesn't seem it is that active (compared to HU) . But will give it a chance.  Thanks again for all your help.

Patient is United Kingdom, if that's what you're asking.  I'm in Canada and feeling a bit isolated, although I have over the past 16 months since diagnosis met two other people with PMR in my city, which is small in population but huge geographically.  Kind of like the country as a whole, come to think of it!  Some months ago there was a bit of a discussion about patient support via a forum in Canada and I hear there used to be terrific support, but it appears to have evaporated since before I arrived on the scene.   

I think the USA group lacks members like the prime movers who keep this forum and HU so active but perhaps things will improve.  There has been an effort to get a Canadian group going but, again, there simply aren't enough people signing up for it to work, nor yet enough homegrown expertise.    

 

Hi Dinty,

I set up the PMR in the USA (PMRUSA) blog with Audrey Schur. We both live in the US and are both fairly long time PMR sufferers and we met, like did many, on Patient.

Patient is such a wonderful website and so many of us roll our PMR lives around the daily help we get from others.

?The reason to set up PMRUSA was to provide help for those living in the USA - I live in California and Audrey lives in Florida.

I am the "Moderator" for the PMRUSA - the only reason to have the moderator is so that we don't get a lot of non-PMRers putting nasty stuff on the blog. Sometimes I don't have time and sometimes I'm not feeling so good - so I don't have time to view the site and the requestes to join - that's why it is late sometimes before folks can access the blog - my fault !!. But I think we have been helpful to some and discussions about medical issues in the USA are certainly a bit different from National Health etc..!

Bur certainly there is nothing better than the PMR section of Patient (and Eileen !) to help make your PMR life a great deal better.

So now you know why there is PMRUSA !!

We are all happy to help - even though we're a bit slow !

All the best

Dave

I was just going to say - it can take up to a week or more to get approved with any of the forums. This one has employed people and even then it can take a few days if someone is on holiday. I know our NE one can take several days - not because the volunteers don't process you but because the server people take their time. There are some steps that we don't have control of.

Thanks for the info.  It does seem that the UK has the ability to motivate, organize and maintain their PMR discussion groups more effectively than  the US and Canada.  Also, it appears their expertise and resources for PMR are more established and better communicated.  I wonder why.  Surely there are as many PMR sufferers in the US and Canada as the UK.  Perhaps, it's geography.  Look at the UK - smaller and more compact- whereas Canada and the US are spread out and the states and provinces do not always interconnect to form a cohesive whole. I am from the US and wanted, like you,  a more local group and experience, which is why I was looking into PMRUSA.   

Hi Dave, I'm from Massachusetts.   I am new to PMR - just diagnosed in Oct this year. And, yes, the UK forums are excellent.  But  I agree, for those of us living on this side of the pond, it would be nice to have a USA-based PMR forum. And I concur the UK and US health systems are dissimilar and that sometimes it would be helpful if discussions and conversations took that into consideration.  

But keep up the good work - don't get discouraged.  We need PMRUSA -  it just has to continue to grow and attract the same level of expertise and membership that the UK has.  I have no doubt that it will - it is greatly needed.

A former Prime MInister said that if some countries have too much history, Canada has too much geography.  I have met two people with PMR.  One happens to be the father of my daughter-in-law and he was diagnosed long before I was, but I didn't know what he had.  He has other health issues too.  I think I'm his support network, which is nice for him, but I don't feel he's a support to me. The other was someone my son met at a trivia games night and he put us in touch with one another, that was just a couple of weeks ago.  I very much doubt this encounter is going to lead to a support group.  I do find it extraordinary that in sixteen months since diagnosis this has been it!  There must be more people out there but I've no idea how one finds them, and maybe they don't want to be found?  The most refreshing exchange I have had, truth be told, was with a former co-worker who has been suffering from fibromyalgia.  Different disease, but similar restrictions to lifestyle.  We had a long chat over coffee a few weeks ago and exchanged accounts of our respective journeys and travails, and basically I had a great time and I think she did too. 

That the UK has such a good support system is entirely due to 5 women who met here and got together. Some of them are well up in their 70s now but still active in all aspects of the work.

Nothing comes from nothing - it is b£**%" hard work!

What a coincidence!  Just a few minutes ago my new acquaintance, who is on a brief holiday thousands of miles away across the country, phoned to ask me if I knew anything about her new symptom, which on description sounded like piriformis syndrome, so I guess I'm part of her support system now!  

 I think I was almost immediately approved by the UH pmrgcauk, so that was my expectation.  But I understand when there are only a few volunteers or in pmrusa's case,a few moderators, it may take some time as they obviously can't be monitoring the site 24-7.  So I apologize for my impatience.

Agreed, I'm sure it is an enormous amount of work and those 5 woman shoud be commended for their effort and the excellent forum they created.  But in the US (and Canada) there is difficulties to 'getting together' - mainly geography.  The one person I have met here from America is from California (Dave), I'm from Massachusetts, the otherside of the continent. So, not impossible, but challenging - especially when you consider we are in different time zones.  I think Dave deserves a lot of credit creating the pmrusa forum  - hope he doesn't get discouraged. As you said, it is b$**%" hard work!

HaHa - funny Prime Minister - but true.  I have met no one with pmr and not sure I will - the only person I have met in this forum from USA is Dave (the moderator).  Dave is from California and I am from Massachusetts - opposite sides of the continent (probably won't be meeting for coffee). But at least you've found some support with your former co-worker, so that's positive and something to be grateful for.  As we say in the states - 'Take it where and when you can get it'. 

Is she the one who also has fibromalagia?  Well, you can both support and help each other Two is much better than one.

No, she has pmr.  My friend with fibro doesn't have pmr.

PMRUSA was a joint effort, also.  I think it was Audrey who collected a lot of the names and actually had a bit of an email group going. Dave very kindly volunteered his technical knowhow!  

In the past I think in Canada there was support offered by the Arthritis Society, but probably because of cuts in funding that has withered away and I guess people who were involved at the time either didn't or couldn't keep things going.  I came on the scene last year to find a chatroom basically empty of contributors.  Checking in just now, out of interest, the chatroom has gone completely but there is an "Ask an Expert" section.

To a great extent it isn't the label you get that matters. I also participate in a lupus forum - many of them are young, with small children and they have a truly life-threatening condition. But they face a lot of the same problems we do in terms of fatigue and pacing, needing to know about their illness and fine a doctor who knows about their illness. I've learnt a lot from them - and am very often able to contribute to their discussions usefully.

 

These days distance isn't that much of a problem unless you think it is one, I live in Italy, no-one I know locally with PMR, never mind someone speaking English. My closest contacts (in terms of friendship) live in the north of England, the south of England, Scotland, western/northern Canada and Spain. Any of them also live a minium of 6 hours travel away - even flying since it is a few hours to the nearest airport. The ladies who set up the UK charities live at least a few hours apart - at least 4 hours drive. If they could drive, and they were older and ill. So that isn't peculiar to the USA and Canada.

I've spent time chatting on Skype with a cup of tea or glass of wine in hand - and participated in medical video conferencing in the same way. Some of my best friends I have met through PMR and see once a year at most - but they chat on FB, skype and use the forums. Even ladies in their 80s and 90s - so age need not be a barrier either.

Yes, you are correct - there are many ways of communicating today rather than  in-person. Although, I'm no big fan of social media - it does seem to be the way we generally interact with each other today.  So maybe I'm just too old and old fashion.  However, even granting that, with regard to starting a forum in as big a country as the US and Canada, I think it would be helpful to have at least one more person (even if at a distance of a 4 hr drive) to occasionally meet with face to face.  For me, there is no substitute for working with people directly (even if  infrequently).  Also, I would love to participate in a forum in-person, to partake in the back and forth discussions I believe are difficult to replicate through e-mails.

No, David did credit Audrey with helping to establish PMRUSA - I didn't mean to minimize her role.  But, it is obviously very difficult to keep a support group going.  Kudos to the UK who has been able to run not just one forum , but several successfully. Don't know what ingredients we are missing in the USA/Canada to effectively maintain a forum - we have oviously tried several times. But I am hoping that PMRUSA will make it with Dave's guidance and know-how.

Hi Eileen and Dinty, I found support and knowledge much more available, naturally enough, for osteoporosis.  The issue really is the invisibility of PMR.  I have just had an odd exchange with my husband.  He mentioned he'd read that many cases of fibromyalgia are misdiagnosed.  I looked at him.  This is the man who has lived with me through this whole episode of my life.  For several months I left Kate's book casually in places where he might pick it up and read it.  After I looked at him, I remarked, "Polymyalgia isn't the same as fibromyalgia".  I had to repeat that a couple of times.   Then I agreed with him that fibro is probably very often wrongly diagnosed and said that in a way I was lucky because there is an effective treatment for PMR.  But until this moment he hadn't understood what I have.    So there's not much hope for the general population, and all of us patients are surrounded by this depth of ignorance.  So it is nice occasionally to meet other people who understand exactly what we're going through.  So although I had a very satisfactory morning with my fibromyalgia-sufferng friend it would be nice to also be able to meet others who understand exactly waht we go through.  Pred makes a difference in our lives, both by helping us function, and also giving us yet something else to manage.

Everything you have said is very true.   PMR is invisible - and it isn't a sexy disease (unlike fibromylagia and osteoporosis - they're sexy because they  get a lot of hype and press), Plus, PMR is difficult to diagnose and there is no specific symptoms to set it apart (except maybe it's  hard to turn over in bed), nor are there any explicit tests that prove you have it. Also, it manifests differently in everyone.  As someone said many Doctors (and some Rheumatologists) don't understand PMR. So it's unlikely the public will grasp it.  For sure they aren't going to do a PMR walk to raise money for research.  I never even heard of it, until I got it.  And my husband, who is generally a great guy, feels that now that I am on Prednisone, I'm OK - so quit complaining.

Having said all that, it is remarkable the work that has been done in the UK to raise awareness. Certainly those 5 very dedicated and savvy women who started the forums and charities have moved us all forward to some degree.