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Want to Make Sure I Can Communicate with Club Zero people!

Posted , 8 users are following.

barbara75814
barbara75814

Dear People, I am not very technology-proficient, being 84 years old and having retired just at the time computers were coming into offices. But I'm eager to have a chance to learn from the people who are no longer on steroids, and I'm not sure how to access that new site. Moderator, thanks much for your written advice, but could you simplify site instructions for the likes of me? Meantime I'll meditate on all my red blotches.  Best to everybody and thanks for all I've learned and continue to learn!  Barbara in USA  

1 like, 19 replies

19 Replies

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  • audrey80537
    audrey80537 barbara75814

    Posted

    Hi Barbara, 

    I'm sure you will receive all  the help you need to get around this web site.

    i learned through trial and error and every once and awhile one of the moderators would hop on board with assistance.

    Where are you in the USA? 

    • barbara75814
      barbara75814 audrey80537

      Posted

      Thanks for writing, Audrey. I live in Greenbelt, Md., which is 15 miles from the White House. And you?? 

       

    • audrey80537
      audrey80537 barbara75814

      Posted

      Hi Barbara,

      So happy to meet you.  Compared to most on this site we are like neighbors😀. I live in Longwood, Florida-sort of a suburb of Orlando.  Moved here 30 yrs ago from LI, New York -drawn  by the healthy sunshine and a great place for my children to grow up.  I've never regretted it.

      i was diagnosed with PMR last March and by chance (and Google) I found all these wonderful, knowledgable and giving people.  I don't know what I would do without them. I read every post and learn something new each day.

      i would like to start a little support group here in Florida but I don't believe I am in the right location. A retirement area like The Villages would probably find me many with PMR as it spans through three counties.  Where I am is mostly young working families with children but I keep trying.

      Take care and have a wonderful day!

      Audrey

  • pauline36422
    pauline36422 barbara75814

    Posted

    me  too  barbara, i dont know if i sucseeded   or not but still trying. and i am a  young 73   year old   lol
  • MrsO-UK_Surrey
    MrsO-UK_Surrey barbara75814

    Posted

    Barbara, you can read the posts from those of us in the Zero Pred club by clicking on the following link:

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

  • david14272
    david14272 barbara75814

    Posted

    Hello barbara.MrsO has posted super info for one and all.I would just like to add i have been off pred for around 3months now, Fingers crossed. I owe it all to the pred&super advice from these forums [thanks Girls} Do not be afraid to post for advice on any problems you may have.I Wish You Well for your journy, take care. Dave.
    • barbara75814
      barbara75814 david14272

      Posted

      Thanks for writing, David, and congratulations for your Zero Club membership!
  • EileenH
    EileenH barbara75814

    Posted

    Don't rule out the advice from the rest of us who haven't yet got off pred entirely - some people need a low dose of pred for a long time but are still able to lead a normal life even though we don't come into the "Pred Zero" classification. I'm one, I have just spent 3 weeks on a strenuous tour and conference in China but am still on 5mg pred. It made little difference to me. 

    In fact, there are far more of us on this forum who are living well with PMR and pred than people who are off pred - so log on and explore all the threads because advice will come from the people at the coalface as well as those who have reached the surface.

    • david14272
      david14272 EileenH

      Posted

      Wellcome Back EilleenH.i do not yet class myself as a zero club member after just 3months i realize Mr PMR can strike back at any time,at the moment it is one less illness,i can now concentrate on getting my brain fog etc sorted {anemia} I will carry on putting my Miners head light on and popping on to the coalface to see how you are all coping.Once again a big TANK'S. Dave
    • barbara75814
      barbara75814 EileenH

      Posted

      Yes, so true, Eileen. And many thanks to you for your many contributions to our knowledge about coping with PMR......
  • Emis_Moderator
    Emis_Moderator barbara75814

    Posted

    Hi Barbara,

    If you go to the discussion https://patient.info/forums/discuss/zero-prednisone-discussion-450915 and click the green button at the top of the page saying "Follow this discussion" you will receive an email every time someone posts a new comment on it. You can then click the "Go to the comment" button/link in the email received to take you straight to the posted comment.

    There is an FAQ/Help page linked at the bottom of every page in the forums with instructions on all areas of the site that may help.

    Regards,

    Alan

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