New to this "journey"!

As a matter of interest, Eileen, what's the third forum? I've only come across 2. 

It was the second set up - by the NE of England PMRGCA charity. This was the first, 5 ladies "met" here and decided to set up a PMRGCA charity to provide support and information to patients as, at that time, there was this and nothing else. A couple of years later a lady in France approached them to ask about setting up a forum for those of us who cannot get to a real-life support group and she did so with their blessing. The HU forum came considerably later - with no consultation by the new national group with anyone else. However, not long afterwards there were awful host problems with the NE forum and many members were lost - we simply could not get onto the forum without terrible problems. We switched host - but too many had been lost and it is now a meeting place for a small group of friends who had met through it. Some of us are still with HU, a few here. Some on the forums also belong to support groups - but the vast majority of people who attend support groups do so because they are not "in" to the digital age.

It is the nature of the beast that the community changes - I have been here for 9 years which is really unusual. Most people arrive, stick around for a couple of years and then move on, either because they no longer need the support because they manage with their PMR/GCA well or because they are off pred. many cannot face being reminded of a fairly dark part of their life. Those of us closely associated with the charities remain to pass on the accrued knowledge. This forum also had problems a few years ago and a lot of people drifted away, as they also did with updates of format which they didn't like. You have to have a critical number in order for there to be enough activity to get a google listing - which these days is essential to gain more followers or the forum dies. Attempts have been made to get a forum going in the US/Canada but it wasn't big enough and the experienced people already have enough on their plate without doing more forum stuff.

I actually think it is quite nice having a world wide forum. At the end of the day PMR is PMR. Also you can find out about how other countries cope with both PMR/GCA and their health service in general. 

I do too - but was addressing one of lynda's complaints "The truth of the matter is I've been on another site 4 apprx. 4 weeks and it finally clicked that all the people were in the UK, which is fine except there were a few terminology barriers that started to get a bit annoying (sorry, but it's true)!"

I agree re a world wide forum - another advantage is that there are people here virtually 24/7!

I too love that this is a worldwide forum. I’m based on the Montreal-Ottawa-Toronto axis and share insights I’ve gleaned from this forum up and down that line. I deeply appreciate the level of research sophistication from folks like EileenH and other experts here. Smart docs understand that the wealth of experiential wisdom and targeted research found here is an invaluable knowledge base; one that helps to balance the often time-constrained and over-lobbied realities of conventional medicine. It’s one of the few places on the inter-webs where the hive mind and social media lives up to its potential. And no product placement either. So welcome, Lynda and ❤️ to us!!

I have been accused in the past of being pro the pharmaceutical industry - just for saying it as it is: the only effective option for management of PMR is corticosteroids! Nothing could be further from the truth!!!! 

Ooops - that doesn't read well: I mean that being pro pharma companies couldn't be further from the truth    

I do fully support the use of pred for PMR - used properly there is nothing wrong with it but we have to do our part too.

I have been on this forum for about 2 1/2 years. I have gathered a wealth of info from it, and although I no longer have PMR after 2/1/2 years, I still follow it.  So many interesting and knowledgeable folks here, I do enjoy the way folks from other countries express themselves, and do not find it annoying at all.   I suffered severely at first before dx and was practically crippled.  I told on this site about my recent terrible fall and fracturing 3 pelvic bones and boy! has that been a trip of excruciating pain, now much improved, using a walker and improving.  It certainly makes you appreciate life!

Thanks Eileen for your info on some the history of these different forums and how they got started ... quite interesting..  

So pleased you are improving Elijo - onwards and upwards now!!!! Keep in touch xxx

Thanx so much for your good wishes.  I often wish I could ditch this walker and the W/C and get up and run!  I know that will come, and I also want to take this time again for all of the many good wishes I rec'd from you wonderful folks after my fall and 5 weeks in rehab and hosp.  Those positive wishes dod wonders for me, made me feel so good, and positive, too!  Believe me, there's no place like home!!!

You are upright and walking - hallelujah!

Yea, that I am!  Hallelujah, right on!

Hi Harrie4, I worked for a company in Kanata for several years, spent a lot of time in Ottawa. Had some great times. Keep smiling ☺️

Elijo, miracles do occur in May in a wheelchair, skied and insturcted skiing at 2 area that winter. Please don't rush, take your time, increase your active a little each day and don't over do it. The positive with a smile. ??

sending best wishes to you, I have enjoyed reading your journey with pmr, and good luck and do keep letting us know how you go in your recovery.

 

Great to ‘meet’ you, Michdonn. Your skiing and smiling is a huge positive example to me. (I’m still hoping to go back to my evening runs under the lights at Camp Fortune. )

Thx for sharing your journey!

Lol Eileen....up crack me up!!! I'm grateful for ad many forum's as possible as I don't think one can Ever gather too much info!

Thanks Margaret.  Yesterday in PT they had me walking all around the room with a cane!  I felt so free, almost as free as a bird!  My husband are going to the Medical Supply store soon and buy a cane!  The very best to you, too!

Nice to meet you Harrie4, we are all in this journey together helping each other along the way. The forum has been a marvelous help in my journey; I hope it helps you in your journey keep smiling! ☺️