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PMR/GCA in Canada

Posted , 13 users are following.

Anhaga
Anhaga

Some of us on the Western side of the Pond have been starting to form an email group.  So far it is mainly US residents, but there are Canadians joining as well.  For the time being we have decided to stay with the Americans, and when there are enough Canadians communicating with one another we will likely form our own group.  If you are a Canadian and would like to sign up for the Egroup, please private message me and I will pass your email along to the US coordinator.  I'll be posting this on HealthUnlocked as well, so reply only once please, either here or there!

2 likes, 49 replies

49 Replies

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  • Mrs.Mac-Canada
    Mrs.Mac-Canada Anhaga

    Posted

    What info should people include in their PM to you?  Hopefully their location in Canada so we can contact the members that live near us👍.
    • lodgerUK_NE
      lodgerUK_NE Mrs.Mac-Canada

      Posted

      Email address and location is a must. 

      The last means you might just have a next door neighbour you never knew had PMR and/or GCA.

      Why because 'you don't look sick' to borrow the words of Christine Misandero in 'The Spoon Theory'.

  • ellen40911
    ellen40911 Anhaga

    Posted

    Hi Anhaga,

    I am very new to this site so I wasn't sure how to private message.  I am from the US and would love to get hooked into the US coordinator for PMR.

    Thank you!

    • EileenH
      EileenH ellen40911

      Posted

      To pm, click on the silver grey envelope below the atavar (at the side of one of their posts) of the person you want to pm. then you write your post the same way as any other post but it will only be visible to the person to whom you send it.
  • Anhaga
    Anhaga

    Posted

    Eileen and Lodger are the experienced ones, so follow their instructions.  The handful of people I've met this way have exchanged info about their location when first contacting each other by email.  No, I haven't found a neighbour, but a few weeks ago I learned that my daughter-in-law's father has PMR, has had for a couple of years.  She had just said he had some kind of arthritis with a strange name.   So, yes, fellow sufferers may be closer than we know!
  • Dave-California
    Dave-California Anhaga

    Posted

    Hello all you "Across the Ponders" - I am one of the group that is trying to generate the "blog" site for those with PMR who live in the US.

    I have set-up the site and there are two of us who are just playing around with it to make sure it works and is secure.

    It will require membership and I will act as the moderator for a while to make sure we only have members who are really interested in helping each other, prevent hacking and still connecting with all the wonderful folks on "Patient".

    We will be setting up a 'library' much like "Patient" with references to USA medical sites, research, doctors, etc.

    It is a bit of work and we will appreciate everyones help and comments.

    We will keep you apprised of the status and send out info when we are ready.

    See you later !

     

    • Dave-California
      Dave-California EileenH

      Posted

      You guys won't enjoy the 'party' as it will be non-alcoholic - I'm taking Methotrexate !! sad
    • Dave-California
      Dave-California bon3147

      Posted

      Hi Bon,

      Yes - I set up the PMR in the USA (PMRUSA) blog with Audrey Schur. We 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

  • Anhaga
    Anhaga

    Posted

    The emal list of Americans and Canadians has already morphed into a yahoo group. If you live in either the US or Canada and would like to sign up please do so directly by following these instructions provided by the moderator of the group (note that my pre-existing yahoo (dot) ca account worked just fine):

    From this point forward our group will be known as---PMRUSA

    We are now set up under Yahoo Groups as a support group for PMR

    1. Go to GOOGLE and type in -yahoo groups search - enter

    2. next screen click on search

    3. Next screen type in PMRUSA

    4. Next screen click on icon and this will bring you to our group

    5. Click on JOIN GROUP and follow directions

    Note: You may need a yahoo.com address to make this work for you. It is free and simple to open by going to yahoo (dot) com. It may also be a good idea to have a second email address for this account for security purposes.

    1. After you register you are all set to communicate with your group

    2. At this point it would be a good idea to stop doing the mass emailing to everyone's private address as we are currently doing-we don't need duplication-unless you are having a problem joining the Group.

    3. If you are not answering someone else's Topic you will want to start something NEW-then select New TOPIC tab

  • Anhaga
    Anhaga

    Posted

    it is futile to attempt give any information about how to join the PMRUSA group on the website that begins with y in this forum.  This is just to let people know that they no longer should private message me but should instead search for this alternative group.  I hope this post is acceptable.  It is my fourth effort and I am getting really stressed.  I have NOT placed any direct links into any of my previous attempts.  
    • Anhaga
      Anhaga

      Posted

      group is called PMRUSA
    • EileenH
      EileenH Anhaga

      Posted

      It isn't futile - it is because there is a computer catcher that identifies certain words, even words within words which has caught me out in the past! All I did was name a town in England that had a 4 letter word in the middle rolleyes  . It is to protect you from spam and other trolls.

      When you want to put in a link all you have to do is contact the moderator and ask permission to have a thread of your own/post to say what you want. Provided there is nothing dodgy it will be approved. Once a link has been approved you should be able to use it freely I think.

      I'm sure he will add the link for your new site to the websites and resources post I quote all the time:

      https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    • Anhaga
      Anhaga EileenH

      Posted

      Thanks Eileen,  but I think I've done all I want to do for the time being to get this group started.  Feeling pretty shaky today.  Went for my regular morning walk and felt really dizzy and faint and thought I wouldn't make it home. 
    • Emis_Moderator
      Emis_Moderator Anhaga

      Posted

      Hi Anhaga,

      The posts went for moderation because they included the yahoo website. I've approved one above and I have added an entry to the pinned discussion Eileen mentions in her post. The direct link for users to find the group is below. 

      https://groups.yahoo.com/neo/groups/pmrusa/info

      Contact me any time if you need any advice or suggestions about this or anything else.

      Regards,

      Alan

    • EileenH
      EileenH Anhaga

      Posted

      It is probably to be recommended to take an extra bit of pred on days you have this sort of thing to do ;-) - I know exactly what you mean! 

      I didn't mean you to go do it now immediately but it was info for later use - because there will be "later" moments! I "Reported" your post so the Moderator would maybe deal with it a bit faster for you and he did as you've seen - everything you wanted I hope. biggrin

    • Anhaga
      Anhaga EileenH

      Posted

      Thanks Eileen.  I was only trying to help out, had no idea that suddenly there would be an expectation that I was going to be able to set things up.  What I really want is a neighbour to go to the coffee shop or for a walk with.  This method is obviously not going to find that person for me, although a bunch of people in the Western part of North Amnerica have already compared notes on where they live and could they conceivably get together?  I would certainly never take more pred just for something like this!  Especially as my doctor gave me rather disheartening results from my bone density scan yesterday.  It becomes more important to care for myself so I get better and can reduce the pred to next to nothing if not completely nothing....  BTW I'm finding your dead slow method helpful, just embarking on reducing to 8 mg, so fingers crossed!  Thank you for all you do!
    • EileenH
      EileenH Anhaga

      Posted

      I don't think anyone "expects" anything of you - all the suggestions you've had have been ideas to help you and the others. Some of us have been there trying to get groups together and we know how hard work it can be.

      In this day and age if you find someone else who "does" Skype or Facetime you can have a coffee together - I have often had a chat and a coffee/glass of wine with friends and daughters. 

      Had you had a bone density scan before pred? What were your readings? It doesn't have to be the pred that did it and it may never get any worse - no-one can tell. There are far more important things to modify than just your pred dose and you are already just about at a "physiological" dose which means it is about the same dose as your body makes every day anyway. 

      You need to keep walking - for bone density too but also to keep your muscles in good trim. Wear sensible shoes for walking - and wear shoes in the house too, never sloppy slippers. Remove all trip hazards like rugs on slippery floors and trailing cables. Have stairs and dark corners very well lit. Keep well hydrated and make sure your vit D level is really good - both can contribute to being dizzy or wobbly and increase the risk of falling. Make sure other medications are optimised - BP medication especially can lead to low BP and dizziness and if it something you are prone to, make sure you stand up slowly and wait a moment before heading off.

      And remember - having low bone density doesn't mean you WILL break a bone - people with perfectly normal bones fall and break things and people with low bone density never break anything. There are far more factors involved than just that.

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