Pssssst….Quietly passing this ‘e-card’ of thanks to Kate Gilbert, Celtic, and three more angels for starting PRM/GCAuk, (What would we do without it?) Please sign it and pass it on.
Wonderful women, I’m quite certain when you started this community, you had no idea that years later a 63 year old lady in Nebraska would point to you and say “They changed my life.” But you did. Thank you so very much for starting this wonderful place of education, fellowship, and compassion. I’m deeply indebted to you.
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Insight329
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Hear, hear, Joy :-). Sincere thanks to the PMRGCA Aunties / Angels who are unfailingly there for all of us with their wisdom, advice and thoughtfulness. And not forgetting... for putting up with my often silly antics here..
Without this forum I would have spent days and months trying to puzzle through all the twists and turns of PMR---alone. Even with an informed and accessible treatment team, knowing that this resource is here and welcoming and supportive without judgment has made all the difference.
Thank you to all the founders and administrators who give of themselves every day
I do so wish that all of the 25 determined people from all over the UK, who met in London in March 2008 who all paid they own expenses and Professor Bhaskhar Dasgupta provided the venue, the refreshments and lunch were still around.
One year later, 3 charities and four support groups.
10 years down the line, still growing, 3 forums, coffee meet-ups, more research and, not in my lifetime, a cause and cure.
We are still growing and still are operating on pennies. 99.9% of the work is by volunteers.
No matter as there are some professionals who donate their skills free of charge or adopt us as their designated charity and charge us next to nothing.
Whilst I am here a personal thank you to PMRpro, we met by chance, and she has become a close friend, my 'go to' person and we have all benefited. PMRpro won't tell you but she has had PMR now for 14 years, but joined OMERACT and has attended conferences around the world on all our behalf.
The world may be a turbulent place, but the good people outweigh the bad by millions. I have met loads of them.
Yep: PMRpro! She's not only your go-to person, she's one of ours, too.
She mentioned that because of 5 courageous women, this community was started. I asked her who the 5 were so that we could recognize you. It's important that you know how very much this community means to so many, many many..... people. I think you do know...but I hope it's nice to see it in words.
I’m beyond grateful for the wealth of advice and support on this forum 🙏 Thankyou all for starting it... I sometimes imagine what it would be like without it. Very very tough and lonely xxx
You boost us when we’re down, you generously provide wise guidance and wisdom, you encourage us to seek our own knowledge and advocate for ourselves. Ever go grateful for this forum and those dedicated souls who stared it and keep it running. from Gray, Maine, USA!
Oh my gosh! Thank you so much! Yes, way back, eleven years ago now, five of us got together via the internet - Jayne, Pam, Wendy, Mavis and Kate. We all shared a vision of an organisation that could offer support and information. We met up and got down to work. I don't think we imagined then that we could reach as far as Nebraska. But we have, and we all share in this fantastic community.
Insight, that is so very kind of you to include me but really I am not worthy of being put in the same 'class' as Kate and jinasc. Kate was the one responsible for setting up the National Charity, PMRGCAuk, and jinasc, together with 3 others she met on another forum (Patients Experience) set up a Charity in the North East of England. In turn, I then met up with jinasc and the other four when they, including Kate, all answered my first post on the Patients Experience. That was about 11 years ago. There was also a Charity already up and running in Scotland. This forum arose out of the National Charity, and I got involved at the outset in offering support from my past experience with both PMR and GCA. There are now so many wonderful people offering their support, obviously led by PMRpro and Dorset Lady, and I have sadly found the need to step back a bit to concentrate on the support group I organise for those with PMR/GCA in the Surrey area and surrounding counties. When I set up the Surrey group nearly 7 years ago, I never expected it to grow as it has - 50 members at the last count. But how very kind of you to think about sending such a lovely 'e-card' and message to everyone. Thank you.....and my thanks to Kate and jinasc, too!
Hi Celtic. You Do Deserve an Honour !! What an Amazing job you do putting your Support Group Members first even though you still have Health and Family issues of your own. Through the Support Group of Chertsey l had the Honour of meeting PMRpro and what a Lovely Lady she is. Through this Forum l have learnt so much re the PMR condition and different medications. Kate Gilberts book gives me reassurance every time l look something up. I love meeting up with other PMR/GCA sufferers and hearing their stories and learn from that as well hoping that one day I will conquer this horrible condition . Sendng love and Virtual hugs .trish xxx
Aah, Trish, thank you so much. Just like you to join in here with your thoughtful and generous nature. We missed your smiling face at Chertsey on Tuesday - I hope your appointment went well. The presentation by the Air Ambulance speaker was so interesting and Susie made some delicious cup cakes to raise funds for the Air Ambulance Trust. Beryl rang yesterday - she had just had confirmation that her PMR is in remission after over 10 years so stay positive, Trish - you, too, will “conquer” this pesky condition and get back to your beautiful knitting again. I do hope Pete continues to get stronger, too.xx
Hello Celtic..l don't smile much these days but l thought of you All at the meeting and wished l could have been there and pleased it went well.l envy your member who is in Remission ( l wish). I had lovely treatment from my Osteopath Reena,gentle massage,ultrasound and Strapping to Right side of neck,Right shoulder and top of Right arm as it appears that l Did dislocate my Right shoulder and collarbone which appears to have gone back by itself.The strapping seems to have eased my pain enough to take the edge off .l owe Reena a lot of thanks as it is through her that l found you and PMRGCA Support Group of Surrey and have Never looked back. I see her again on Tuesday .Members on this Forum would be nowhere without All the information that comes through.Take care and Best Wishes to You and Mike.love trish xxx
Gosh, Trush, it sounds as though Reena really went to town on you - how long will the strapping remain on? I do like the sound of her gentle massage and ultrasound treatment - that worked a treat for me on knotted muscles in my shoulder blade area at one stage of my PMR/GCA ‘journey’ during a few sessions with a PMR-savvy physiotherapist. It seems years ago now that I had that first contact with Reena when she rang enquiring about the support group for one of her patients! A rare therapist to do that. Do remember me to her. Keep smiling!😊xx
Good Morning Celtic..Yes it's a few years now since l was introduced to you. The strapping seems to work for me and you usually see sports men and women on Television with strapping on which helps pain and blood flow.The strapping usually lasts about a week and depending on my pain level today this strapping will come off this evening or early tomorrow morning ready for my appointment with Reena tomorrow morning which l am already looking forward to.l have a feeling that she will strap it again as the swelling in arms are not so severe, but still give pain at night . It's All clever stuff. I will pass your best wishes on to Reena tomorrow. Take care and I'm Always thinking of you ..trish xxx
Trish, I wonder if the arm pain overnight could be eased by sleeping on a comfortable reclining chair rather than lying completely flat on a bed for a few nights - that is certainly helping someone else I know. Hope the appointment helps tomorrow.
Hello Celtic..thank you for your reply re sleeping in a reclining chair but l am not sleeping on my back as the Lady Dr at Guildford A/E told me to sleep propped up rather than lying flat to take pressure off of the shoulder and arm. I also learnt about sleeping in a recliner chair when l first had PMR and also after 2 Trapeziectomy Operations when l was in a lot of pain but this pain in the last few weeks has been worse than all of that until Reena started on Strapping last week. I also find comfort with laying my arm on a cushion or cushion under the armpit. I had another lovely treatment today but she concentrated on the strapping more up to the neck and a little bit further down the Right Arm and also gave me strapping to the lower spine which seems to be working . I gave her your Best Wishes and told her that PMRpro says she should be cloned like Dr Hughes..lt's wonderful to have this rapport with my special Osteopath who understands PMR so well . Hope you and everyone on the Forum are enjoying today's lovely weather .Love trish xxx
Trish, it is really sounding as though Reena and her treatment is of more value to you than all the Bowen therapy you have had, although I know that you found the Bowen treatment very relaxing. Plus, if I remember rightly, Reena is closer to home so not so far for Pete to travel whilst he is not 100% fit at present. Yes, the weather has been a welcome boost today although I have had to return to Ashford Hospital to ensure that the continuing pain/swelling and bruising from the area where the root was extracted and the gum stitched a week ago isn’t due to infection. Luckily, it isn’t but the surgeon said it will take 4-6 weeks to completely heal. A friend of Mike’s visited today and asked if Mike had been getting heavy with me!! On the way back from the hospital I cheered myself up with a packet of soft chocolates - lovely to have a good excuse, even if it did mean an extra salt water rinse afterwards! Enjoy some more lovely weather tomorrow, Trish - out in the garden for some sunshine Vit D!🌞
Good Morning Celtic..The Bowen Therapy in the past helped me a lot and it was Reena that advised l tried Bowen Therapy..it has worked wonders on my migraines and it used to help my Lower Spine but things have got out of control this winter with Pete's illness and the awful weather and obviously the PMR picking up on the extra stress. At the moment Reena does seem to have All the answers and she lives and works in the village just 10 minutes away so no long journey to Hampton. My pain level is bearable since yesterdays treatment. One day at a time and l see my GP next Monday so l am hoping with the sunshine forecasted that l can have some good days .Pleased you enjoyed your chocolates, something l shouldn't have as a migraine sufferer but l do All i can to avoid them. I hope your face is starting to settle down. You are Brave. Love trish xxx
Yes, Trish, I guess each therapy comes into its own depending which direction your PMR takes at any one time. For instance when you had the sciatic-type pain, I remember Bowen proved very successful as it did for our now dear-departed member, David. Make the most of the promised warmth today, Trish.xx
Hi again Celtic, Bowen for me was an Amazing experience from day one and helped to relax me but l must say that the ultrasound and gentle massage is just as relaxing and we learn from all these techniques.This is what being a member of this Forum means, Learning from others because PMR does throw so many other things at us. I remember David asking me about my first Bowen experience . Mindfulness plays a part as well,l can't imagine how many times in a day l go off to my imaginary waterfall but it helps eleviate some of the pain .Take care ..love trish xxx
Celtic, you definately deserve the recognition. You participated eleven years ago. It may not have been in the same role as Kate and jinasc, but you still played an important role with your experience. Accept the thank-you and know that it also applies to the wonderful work you are doing in Surrey. Bless you !
Just once I felt quite guilty, but I knew you could do it and you have and what is more successfully. Happy I met a Twin who is younger than me and on the 24th, you, Liam (who will be 15 this year) and moi, will all be having a great day once again.
Aah! Hello to my older and WISER twin! Good grief, is Liam going to be 15 already! It seems years since you mentioned the little lad who shared our birthday. Can’t believe you’re going to be 80 - where did that go, you weren’t even 70 that first time we met! Here’s to the next 10 years, twin!🍷
Liam has turned out a lovely, gentle, considerate young man, wise beyond his years. I love him to bits..
Not sure I want to be around for the next ten years............just heard a snippet that this Govt is going to 'give' people money to pay for and choose there medics'.
Which really is "how to destroy the NHS by dangling a carrot and then you only see the gold and not the big stick behind that carrot".
I do so hope I misheard as I was not really paying attention at the time.
Only selected people - including people with complex and chronic conditions it seems. In which case - it COULD be a not bad thing that you can choose your medical team and the therapy that works for YOU more independently. There are already some people doing it and it is done together with a medical team to approve choices.
"One example of the existing NHS scheme mentioned in the government consultation is of a 90-year-old woman with Alzheimer’s disease who uses the personal health budget to pay for care at home, osteopathy treatment and respite care for her family. The woman has not had any emergency admissions to hospital or nursing home since she was given the personal budget, according to the report."
Something like that would reduce the need for hospital admission which costs a fortune and "bed blocking" in that additional care at home to help the family will remove the need for councils to provide accommodation in care homes - but in this case the lady didn't get into the situation in the first place with the preventative measures she could have without waiting months.
Liam sounds lovely - his parents can/must feel proud. Do pass on happy birthday wishes from your twin down South - I’d say give him a birthday hug from me but he’s probably far too grown up for that!
Hope Eileen’s explanation has now convinced you that you do want to be around for the next 10 years after all! Certainly, change of some sort is needed and let’s hope they get it right.
Hope this gorgeous weather will hang around for your birthday celebrations on Saturday. Hoping my mouth will heal in time for the 24th or I won't feel like celebrating - still swollen, bruised and painful and if the same tomorrow will ring the hospital. Mike is better again although he’s been asked to have a blood test repeated - all normal apart from full blood count. A phone call has put things in perspective for us tonight - a close friend who has been ill and in and out of hospital for a few months has now been told she has cancer in several places plus the base of her spine has degenerated to such an extent that they’re doing immediate surgery on that before starting treatment for the cancer. A fit and healthy person all her life, till now - so on my way to bed with a prayer for her tonight.
Celtic, that is hard to hear news and I do so hope is that your friend does not a suffer too much.
I also hope Eileen is correct but since my teens, I am older than both of you, I witnessed the slow erosion the NHS. Lately changes have been coming more often and by stealth. It seems to me that New Labour made an big error when they went to PPI to build new hospitals and it opened a door that should have remained closed.
Dentists who can afford to treat NHS patients are like Hen's teeth and many people cannot pay.
Audio depts - now only do difficult cases, rest is done by Boots or Spec Savers are two.
My own Anti-coagulant checks with a Lobotomist for A/F are now done in my small area by a pharmacy. It turns out that my GP's surgery is now the last local one to still have someone from the Hospital attend every Thursday afternoon and those records are input the same day.
The ones carried at in the local pharmacy are not input to the NHS network that day. They are forwarded to the hospital. So what happens to someone who is rushed in as an emergency.
In my old eyes, politicians of all colours should be honest and bite the bullet and say directly, 'we up your taxes and that money will be ring-fenced for the NHS, we will then get out of the way and stop meddling with it'. With an Ombudsman put in place. Politicans are not going to make long term decisions that might not be popular. They want to get re-elected every 5 years.
That is my rant over for the day and hopefully for many weeks to come.
I agree with every word and, in fact, would add that it is ensured that the extra money goes to where it is needed, on the shop floor so to speak and to the patients, and not just to line the pockets of all the administrators, etc. We never had all those years ago. And as someone who lived in and out of hospitals for my first14 years, the demise of the wonderful matron still saddens me.
Having said all that I’m still in awe of the fact that the wonderful NHS has survived this long with the incredible cost of the amazing equipment they now have in comparison to years ago, although I do know of someone whose business is struggling as the NHS has had to cut back on the specialist equipment he supplies.
"So what happens to someone who is rushed in as an emergency."
The blood test will be done and reported in an hour or so from the lab.
We worked there remember - we've heard the same things said by the people who know because they had to work with the changes for the last 20 years. It isn't new...
It's a remarkable success story, all these voices from near and far ready to share and support - human kindness is a wonderful thing. Who knows how many lives you have changed, preserved the sight of so many by your urgent advice, lifted the spirits of those who feel at times it's all too much - many, many thanks to our dedicated founders and their continuing hard work.. and thank you, insight329, for posting.
I want to add my heartfelt thanks too. I dread to think what my situation would be without the help and information from this site. I was in a dark place, alone and without a guide when I found you. Thank you so very much to the founders and the determined people who have helped so many over the years and continue to rescue many more.
Oh yes, grateful thanks from me too! And also Healthunlocked in general- having been a member of the AF group and now this one, I have found the advice and support to be not just a luxury but a necessity...some GP's and consultants are sadly lacking in the empathy and support departments!
Two thank you messages from me; the first is to the 5 remarkable people Insight mentioned. The ripples from your initial meeting have grown and grown to such an extent that you are helping people across the world understand and manage their own condition. How many can say that? Precious few...
The second thanks go to Insight for telling us how it started. PMR landed for me in 2016. When I found this site it was well established. I was so glad of all the wonderful support and information I never thought to ask how it originated.
Every so often I write a post about how it all happened originally - usually when someone complains there are no support groups/sites/forums in their country - but this is the first time I told people about who on the current forum was involved at the start. It seemed a bit unfair that DL and I were recognised for our part now but the people without whom there would be nothing for us to do have never been mentioned. Insight took that info and put it here - for which I am very grateful!
You are not wrong.............I cringed when I read that post.
No-one can do anything without other people who have brains and come from to a problem from a different angle. The old adage, many hands make light work, I prefer many brains................which I can use as I was last in the queue...............
When I was working, I was called 'Spider', people came into the my web and some never escaped - you will meet some of them, whom I have not actually seen physically for 40 years. You walked right into that web and have stickability......which is a great asset. ..........
I think I have run out of times to change from Jinasc - my parents initials - they made me who I am.
With a bit of luck and a fair wind newbies won't look at this thread
I know that and I appreciate it, it is just me.......I have both in my working life and also in the last ten years have had somtimes to take a much higher profile that I would like. I do try to 'steer' from the back seat, but when I need to be upfront, 'friends and family say' duck now, she is on the warpath'. That happened, when I developed GCA 21 years after nursing my mother who had both and discovered 'no movement at all'
Except for one man I found out later'.
The then existing stats showed 98% women and 2% men. I knew instantly why that was so. I started my working life at 15 and then joined the Civil Service at 17 and then had equal pay until I was 60, although I quite the CS at 36 and moved into the TU work full time till I retired at 60.
Please do not worry, it has meant that people like Kate, Pam, Jane, Wendy, Celtic, Dorset Lady and others too many to name, know now how much they are appreciated and I am so pleased that they know all their caring and hard work has been recognised. Those simple facts makes me have a big daft grin all over my face.
I have forgiven Eileen so why not you..................the last thing I want is an apology from anyone who has no need to make one and has also given others the chance to express themselves. There is little chance we will actually meet, so here is a virtual hug, in fact you can have two.
PS: If you send me a PM with your email address I will send you copy of the International Press Release, which went out in August 2008. It will make you smile as without Elliot, one of your Countrymen that survey would not have happened and it is still running.
Now follows a small Extract as it is far too long to post on here.
Headline: Furious Five’s Trans-Atlantic Hunt over Baby Boomers Mystery Illness
Last para on the last page:
Elliott J Greene Ph.D in microbiology and original background as a Research Scientist, who now co-owns a small software company that specializes in conducting on-line surveys for other companies.
Elliott is located in the New Jersey. USA and he has PMR (see separate page on Elliott J Greene).
PMR FIGHTERS. Jayne, Kate, Pam, Wendy and Mavis.
In desperation to find out about PMR and GCA, these five women met over the Internet on the Patients Experience UK website. They were seeking answers, answers that the Medical Profession could not answer. They quickly realised there were no answers, no cause, no cure and patients were still primarily using the same medication since 1949.
While these two diseases are not life threatening they absolutely destroy your quality of life. In addition, because these diseases mainly occur in women, the medical community at large has just not seen them as important.
Of these five women three are breadwinners, as are most women these days and need to work. It they cannot, they are put into the poverty trap for the rest of their lives. In some cases, victims of these two diseases live on state benefits and cost the NHS a fortune in medication, which relieves the symptoms, but does NOT cure the disease.
PMR can burn itself out and does. *GCA on the other hand, very rarely burns itself out.
After a few weeks, Kate decided to post her experiences, hoping to see if anyone was interested in forming a group with the aim of finding out about research into cause and cure. Four people responded. These five women, aged between 48 and 70, decided that something had to be done. They formed themselves into pmrfighters, got an e-mail address, and set off on a journey. The aim to get the attention of a National Organisation or set up a new National Organisation in order to highlight PMR and GCA so as to get much needed research into cause and cure.
Now that is the longest post I have ever done in the past 11 years, but we did it and others cam along and helped so we raised the awareness and that in itself is enough for me.
* We did not know at the time, that both went into remission, we live and learn.
Thank you all for the willingness to serve so that it would be better for those you followed. This kind group has been a lifeline, continually educating, encouraging, understanding. I am in Illinois and occasionally use a phrase I hear on the website and my school age children I work with say I talk like Harry Potter. Well done you lot 🌹
There is one that I think is still going, but it is different:
Just put National Medical Foundation + Joan Reiter in your search engine and then read about Joan (PMR) her husband Edward and their organisation they are based in Arizona.
Heartfelt thanks to the wonderful ladies who help and advise hundreds of us every week.
Due to the bizarre nature of this strange and often dehabilitating condition ,which presents itself differently in each individual, I've managed to make some sense of it thanks to the 'ladies' amazing input.
A huge thankful to all the founders and on-going contributors of all the PMR/GCA help groups. You are amazing people and our angels. I hate to think what my life would be like without you.
A big thanks from me in North Carolina who would have been soooo alone and out on a limb without this forum. It has truly given me the confidence to own my current state and move forward with intelligence and direction.
Thank you from every part of my pathetic body part. Never posted before but I'm an obsessed reader as you get me by my suffering. Some how I need to know I'm not alone. I'm thankful every day for all your support. I bought your book immediately and it's my other bible. I'm one of the idiots who am trying to avoid the pills as I was on them for 3 months and quit; will see how that works it's been 6 months and I guess it's just my cross to bear for now. Love you all!
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