While looking up the details of this paper to use for an answer to someone I discovered that it is now available "free to air" without paying for access to a journal. Helen Twohig is a GP in Yorkshire England and was part of a group who carried out a survey to assess the effects of PMR on patients and their day to day lives and experiences with it.
She works closely with a group in Keele who have done sterling work on PMR and GCA
Much of it is in medical science-speak so a bit complicated but throughout it you will find quotes from the patients. Those of you who are familiar with Yorkshire will hear their accent - I do!
I hope you may find some of these quotes useful to give to people so they can understand a bit of what you are going through. And if you happen to be in the Sheffield area - there is a rheumatologist mentioned who you'd think might really understand PMR! I don't know if he is still there, he was not too long ago.
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@pmrpro thank you so much for this article. I identified so much of it in my own experience. I find it so much easier to cope with my condition with all this knowledge. It gives me some power back to make decisions about my own treatment. I am getting limited contact with my doctor as so far I have been able to reduce fairly successfully but I know it is going to get tougher from now on. I really appreciate how much you contribute to this forum.
There is a patient research and solutions company based in Toronto, Canada at the moment conducting a study on "patient and caregiver experiences in the field of GCA. The research will focus on the patient's journey with GCA , aspects of daily living from diagnosis through disease management, to support patients better". Participation consists of a one hour telephone interview, mine is this week, and 5 days of online journalling. Compensation is $200 😊
To you all who post here...DorsetLady, PMR pro, and all others to numerous to mention,
I look forward to your posts. This eprints.whiterose.ac.uk/852...absolutely blew me away, as it is the best description so far of what I am and have been experiencing.
Thank you PMRpro for this revealing article, I found the patents' replies very moving as they tried to make sense of their (our) mysterious condition. I've been one of the relatively lucky ones who do not suffer from much pain or stiffness now I'm on pred, but the greatest effect has been on my confidence and mood (although yesterday, when I was taking photographs semi-crouching in the middle of a small stream I found I didn't have the strength in my thighs to stand.. and rather gently toppled into the water on one knee, holding camera above my head. I did laugh, but very ruefully..) 'Weakness' as opposed to pain is how I would describe the outcome so far after 15 months of PMR, and yes, feeling older in both body and mind as the psychological battle to remain positive takes its toll although I'm an optimist by nature. I felt the still-young part of my life, just as I finally had no responsibilities after years of caring for others, had been 'stolen' from me by PMR and this resentment had to be recognised and overcome, no good comes of shouting 'unfair' even if it is! So thank you again for this article, and for all your dedication and knowledge on this forum.
"I felt the still-young part of my life, just as I finally had no responsibilities after years of caring for others, had been 'stolen' from me by PMR "
and I think this is something that is forgotten by many doctors because it hasn't yet happened to them. We are just "the elderly patient" and there is a lack of appreciation of just how much a normal healthy 60-year-old can do. It is perhaps appreciated more here in the mountains where people in their 80s are still riding their bikes and climbing mountains for fun. Not to mention the ones who are still farming their mountain alms!
This was my first thot, “...forgotten by many doctors BECAUSE IT HASN’T YET HAPPENED TO THEM.”
Surely, there must be some doctors who have gotten this by now? I don’t see how they can be “excluded”. That’s what we really need to turn this thing around.
My favourite was the lady: “...said what I’d got. I was very pleased. (Happy about the medicine working,) but when they said there’s no cure for it because we don’t know what it is, that was a bit upsetting.”
That was SO me - befuddled by all the initials. That contributed most to my personal denial. So glad we have you and all the other experts - but, WHERE ARE THE DOCTORS WITH PMR?
There was one on the forum some time back who admitted that now she had it she did realise the way she'd pushed patients to reduce in her working years had been wrong, what was 1mg or 2 here or there in the great scheme of things?
There was another who never said anything useful - and then railed against us for supporting complementary therapies which we know help get through it. Which was probably more typical of what we meet.
You just reminded me of the time I was crouched down to change the cat litter...having carefully lowered myself down. And then my thighs stopped functioning, I couldn't stand, and I toppled right into the cat litter. And I just cried sitting there alone in cat pee. It was a bit of a surreal feeling, really half laughing and half crying and mostly trying to face the thought that I was in need of a wheel chair and possibly of moving to an assisted living home at the age of 52. I too felt that sense of having part of my life "stolen" just when my son (adopted when he was 16...long story) had gotten to the point of independence where I could have a bit of a social life and normalcy at work. Then "bam"... I'm having to perform a strange dance of rocking myself out of bed every morning and I'm falling into cat pee!
Thank you PMRpro - excellent article. Have just finished printing 15 pages with view of sharing with my GP which as mentioned on here has one other patient other than me -haven't seen her in awhile so who knows she may have another by now!
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How do/did you feel with pmr and gca?....... I felt I'd aged.... 
