Hello all!
I was just wondering if anyone read the article in today's Mail On Sunday by Barbara Powell (Babs of Pan's People if you're all ancient enough like me to remember the dancing group on Top of the Pops!)?
This is a two page spread about Barbara's experience of PMR and if you are able to download it I'm sure you will find it very interesting.
Barbara has been down both the steroid and Methotrexate routes and has recently had a steroid injection which she has been told should cover her for the next 3 months or so. Amazingly, she also managed to climb Killimanjaro whilst on steroids! :wow:
There are also comments by Professor Dasgupta who refers to the research being carried out into other steroid-sparing meds and for a blood test to eventually confirm PMR. Professor Dasgupta is the President of PMRGCAUK and, in fact, I have just today sent off my Membership Application Form and subscription to join this national organisation which hopefully will one day come up with more effective diagnosis and treatment if not for us but at least for the generations that follow.
It's so good to see that PMR and GCA is finally getting more coverage in the Press which can only help our cause.
Hope you're all enjoying a good (pain-free) weekend!
MrsO
Hi Mrs O
Top of the Pops. Sunday evening on the Beeb [I think]. Pans People I remember them well. I was a young boy and they were beautiful young ladies. I will say no more. I read the artical on line, interesting. Thank you for the infomation
Andrew
Andrew - I might have guessed that my reference to Pan's People would stir up some memories for you men out there. :roll: :lol: :wink:
MrsO
Hi all
Yes I remember Pans People !! Thursday night Top of the Pops Im sure
it was great to see what is happenning with PMR more specific blood tests sound very promising
The one thing I thought is she is overdoing it Great to keep active but Mount Kilamajaro and walking to the Pole did seem excesive !! and I know that when I tried to keep up even my modest exercise regime I have now what appears to be a permanantly damaged muscle behind my knee Next year i am going to concentrate on trying to do something about that
Great to see the back of the snow ( in the south at least ) New Forest looked amazing but the roads werent !!
Best wishes to all ( been logged out also !!)
Mrs G
Thanks for the pointer Mrs.O Wouldn't wish \"our\" illness on anyone but it would certainly be a help if there were a few more famous sufferers, wouldn't it? Who knows, maybe some of those who have \" never heard of it \" will read it and remember.
Mrs.G I find the overdoing it query very interesting. Like everything connected with PMR/GCA there doesn't seem to be any guidance that is generally applicable except listen to yourself. Generally I find that, even when I have a \"whacked\" day it doesn't help much to rest yet a bit of vigorous activity often raises my spirits. Re your knee: Does it feel as though it has been turned inside out? I had that feeling for ages but it has gone now.
It took some time for me to find this article from 'this side of the pond'. If you're also having trouble, try 'Googeling' \"Babs - PMR\". It should be the first link offered. (Sure wish they'd allow hyper-links to be posted without having to wait days for moderator approval :roll:)
Good article.
Hello Betty
I do find with me that if I am whacked that I can rest my way out of it but with this bout of PMR I havent had so many complete wipeout days as I did with the first bout I am doing a muscle rehabilitation class and I am really enjoying that and hope to start some Nordic walking classes after Xmas
No my knee feels as though the muscle it is too tight behind the knee so bending it up backwards for a strretch is not possible After I did it last year ( while doing Riding for the Disabled and running with a horse ) it was really uncomfortable and getting down stairs with the knee bend was very difficult I had at the time some Hot stone massage which was wonderful ( I hobbled in and walked out ) but unfortunately the lady who does it is returning to America She learnt it in America as here it is normally done just for relaxation but the way she does it is in a sports massage/Physio way I will probably try to get some physio to stretch the muscle out as I want to get my fitness back and my weight down !!
It was encouraging to see that even a \"Pans People \" can put on 2 stone !!
Best wishes
Mrs G
Thanks Rick - I'd tried a range of things but not that! Can get the Mail on Sunday online but it came up as the 4th so must have been in on Saturday.
Hi Mrs G
I promise you that, knee permitting, you will love and benefit from the Nordic walking. I have missed it so much for the last couple of weeks since the end of the 8-week course but am hoping to get a new group of people together who wish to do a shorter walk than the general ones on offer around here which tend to do 4-5 miles - a little too far for me at present as I don't want to rock the boat now that I'm as low as 1mg.
However, Babs (Pan's People) managed to do that Killimanjaro climb is beyond me! When I was on the higher doses during my first 18 months or so even a longer walk than usual where I struggled to do the round trip back to the car set me back with such increased inflammation and pain that the steroids had to be increased.
More recently, I missed my daily walk over 3 days until yesterday upon which I found myself quite stiff and and the walk a bit hard-going; however, today (after yesterday's walk) I walked without any feeling of discomfort whatsoever. It seems that I have to keep up this more or less daily walk without fail to keep comfortable even if it is only 20 minutes. PMR is certainly confusing! :?
Good luck with that knee - as the hot stone massage helped, have you tried a hot water bottle behind it each time you sit down?
MrsO
Hello Mrs O
Yes I am looking forward to the Nordic Walking The person who takes my exercise class is doing it I will have to drive about 8 miles to get there but she is really nice and encouraging and fun and is also very careful about warm ups and stretches and as she does such a lot of rehabilitation classes I am more confident doing it with her
Yes I do the old hot water bottle thing or my wheatbag but this lady stretched my muscles out while they were warm She treated people who were to have back ops and carpel tunnel ops and built their muscles up to the extent they didnt need it She was hoping to train people here but has now decided to go back to America where some of her children remained
Roll on summer !!
Best wishes
Mrs G