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Can we make PMR funny ? Can we fight the immune cells involved ?
“When she was diagnosed with ovarian cancer in October 1986, Gilda Radner’s first thought was how she could possibly “make cancer funny,” as she wrote in her memoir (1989) “How am I going to get people to laugh about it?” What I specifically remember from her memoir was her describing attacking her cancer cells - This is easily googled and as the example provided here from John Hopkins, can be described as:
* Guided imagery. This involves thinking of a certain goal to help cope with health problems. Guided imagery is most often used as a relaxation technique. It involves sitting or lying quietly and imagining yourself in a favorite peaceful setting such as a beach, meadow, or forest. Imagery may be guided by direct suggestion from a qualified imagery practitioner. Another example where a person with cancer imagines Pac Men (from the old Pac Man video game) gobbling up bad cancer cells.
Have I tried to make PMR funny ? Yes - I work in a small biotech company and my first attempt to reassure them I would be ok was to write on the white board before my leave of absence began ( see attached)
I found the 3 wave emojis and let my team at work how easily I can put my arms over my head by using 1,2 or all 3 . There’s also a John Travolta disco dancer emoji - but no disco dancing is happening right now.
Do we know what cells we want to get rid of or how powerful the anti-IL-6R drug KEVZARA is in that fight? I haven’t broached this question yet with my Rheumatologist . My own digging suggests that research is ongoing certainly for the first question. For example, in a Denmark study in 2022, Reitsema,R et al. have investigated T cells in bursa/tenosynovial fluid and bursa tissue obtained from inflamed shoulders of patients with PMR.
I ask those in group who are now taking KEVZARA - how has the pathobiology of PMR been presented to you ? Have you been coached to imagine the drug working ?
I hope to see many abstracts in the program of the American College of Rheumatology Mtg this November that expand our understanding of PMR.
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oopsy -perhaps @johnbishop can edit my POST -- given the target age of PMR patients - i think you all know that Radner is Gilda Radner of SNL fame . her memoir is "It's Always Something" . I ve attached a screen shot of my emojis as well : )
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1 ReactionHi @nyxygirl, Laughter definitely is the best medicine. Gilda Radner from Saturday Night Live along with Lily Tomlin from Laugh-In kept me in stitches during the golden age of TV. It's just not the same anymore. For those that aren't familiar with these two legends...
--- Remembering ‘SNL’ Funny Lady Gilda Radner, Who Passed Away 32 Years Ago From Ovarian Cancer; She Helped Raise Incredible Awareness During Her Battle: https://www.survivornet.com/articles/remembering-snl-gilda-radner-ovarian-cancer/
--- Ernestine's House Call - Saturday Night Live: https://youtu.be/0TbI_1XoJN0
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2 ReactionsI love that you used humor to let people know you were ok with talking about your condition and they didn't have to start a pity party. I haven't checked out any recent studies, but I do know that a positive attitude is going to help us keep making healthy choices. Please keep sharing what you find out!
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4 ReactionsWhen I had PMR, I kept thinking of myself as the Tin Man in Wizard of Oz. I knew how much he must have suffered, poor thing!
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2 Reactions@tsc wow - that is classic !! I also told someone - "remember what Bill Murray looks like on the zillionth day of waking up in Ground Hog Day ? " @johnbishop -this is a great reference for all to see:
“An Impediment to Living Life”: Why and How Should We Measure Stiffness in Polymyalgia Rheumatica?
Sarah Louise Mackie, first author - all from Great Britain.
I guess jumpers are pajamas ? NO reference to Ground Hog Day from the participants !
"'I probably just started off with a general sort of ache, a stiffness. Um because I always used to go to quite a lot of classes, sort of aerobics and things, and when I came back I wasn’t sort of recovering quite as well. You know, I always ached a bit when I came back, but I was aching a lot more, really stiff. Um and I just thought, “Oh it’s me age, I’ll just sort of work through it.” But then sort of like three months on, like you, it was sort of in bed and just—just agony, just really stiff, I couldn’t sort of get me jumpers on or anything without help.” [L/1/F/88-97]""
“An Impediment to Living Life”: Why and How Should We Measure Stiffness in Polymyalgia Rheumatica?: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4425533/
I think jumpers are sweaters, @nyxgirl, if I recall correctly from reading Babara Pym novels. I used to stretch for 40 minutes in the morning, hoping it would help me get out of bed. It didn't. Then I walked for a good hour in the mornings, but the back of my knees stayed stiff. My neck was so sore and stiff I wanted to go to a chiropractor, but I was scared that any manipulation would break my neck! And my morning stiffness lasted all day. I felt a little better in the evenings, breathed a sigh of relief, and thought I was getting better, but every morning proved me wrong.
Oh, the joys of PMR! What nonsufferer could ever understand it?
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2 ReactionsGreat article, @johnbishop. Thanks for posting it.
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1 ReactionThanks Teri - @nyxygirl provided the article but is not able to post links yet. Hopefully she will be able to post them soon.
Well, thanks to you and @nyxgirl both!
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