Please complete our survey!!

[Polywotsit]

Hi everybody

All charities are having a tough time at the moment, and we are no exception. In order to apply for grant funding we need lots of data and statistics to show that we are making a difference, and what difference we are making. So we have put together a user survey that we are asking all our 'users', whether via the web or in groups, to complete. It contains several sections on various aspects of what we do. It should only take about five minutes to go through the questionnaire. Please go all the way to the end because the last question is extremely important. Just follow the link below:

surveymonkey.com/s/LYYPB89

Thanks so much!

[Hidden]

Hi Kate,

Have just done the survey. Are we struggling as a charity? I agree, we are, and we need more money to get us more help. My belief is that we need more clout politically and more enlightened advice medically. My advice from doctors has been good, bad or somewhere in between, and I'm not on my own. I know there are some famous people with PMR. Can we not find a champion for our "cause"? We need one I'm sure. This illness is so debilitating for most of us who have joined PMR/GCA and yet those members who are of working age are expected to go back into work as there seems to be little or no financial help. Not even a Blue Badge for the essential car. Two years ago I was taking care of elderly disabled folks. One bad wrench injury and 2 years of PMR later and I can't even take care of myself some days.

It's so easy for me to say these things. I know how hard you must work, but do put any ideas you might have to us if you think they might help----- PMR and everything else life throws at us are sometimes very hard to deal with. At least you've been there and understand.

Pats.

[Hidden]

I , a 77year scubadiver,wanting to get back to my 'love' am a PMR sufferer since diagnosed July. and have been given hope by all of you PMR sufferers,by my experiences not just

happening to me.BIGTHANK YOU.and support Kate in her well put comments.I have been drawn to the attention of 'Arthritis Today'

Autumn/ No158.Quote-PMR expert Prof Christian Mallen is leading new research as Prof of general practice and Arthritis research.He is speaking at a one-day Int symposium on PMR and GCA at Anglian Ruskin University,Chelmsford in November led by Proff Bhaskar Dasgupta leading PMR researcher.In the meantime I will complete the survey and where it leads me. SCUBADIVER

[Polywotsit PMRGCAuk team member in reply to Hidden]

Hi Scubadiver! Have you tried getting back into the water? I found it really helpful and comforting to be 'held' by the water. It made me feel almost normal again. Anyway, thanks for your kind words and yes, PMRGCAuk is going to be involved in the Symposium! If anybody is interested there will be places available for an afternoon 'patients' session with the symposium speakers for £10 a head. You can book in advance by emailing [e-mail].

[Hidden in reply to Polywotsit]

Hi Kate, after many months of less and less activity,pre diagnose,36hr on pred, back gradually to walking daily and swimming 40 lengths twice weekly now so I know what you mean-I feel so different in the water, no pmr but thats not quite diving but it will come. I still have pain and cramps but you have those without PMR.I will look at the poss. of going to the SYMP.I am

still on 20mg so have to start reducing that but will go into that with knowing fellow sufferers experiences.the Med Prof. dont seem to be able to help there.

Thank you Kate. I have completed the survey