Support needed for my mum: I am writing on behalf... - PMRGCAuk

PMRGCAuk

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Support needed for my mum

grumpy95
grumpy95

I am writing on behalf of my 95 year old mum who was diagnosed with PMR a few weeks ago. Any advice would be welcome. She is trying to be positive but is overwhelmed. Are there any local groups near Ipswich Suffolk as she would like to talk to other people with PMR.

19 Replies
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I'm so sorry to hear that your Mother has this dreadful disease ...

Hi cgvaughan,

With your mum's attitude my guess is that she'll be just fine. I hope she finds a good support group and maybe comes on this website. It is very supportive, people are kind and knowledgeable. The diagnosis is overwhelming at first. The main thing is that your mum should pace herself in all she does and have plenty of rest. There is no value at all in trying to do everything you used to do. Patience is the big virtue here, and letting others help you, no matter how independent you are, give in with good grace ( easier said than done). Please pass on my best wishes to your mum and empathy for how rotten she must feel.

Thank you so much for this kind and encouraging message. I am so glad to know that I should encourage her to rest. It isn't easy because I know that what takes the anxiety away is distraction - so getting the balance right is a challenge!

DorsetLady
DorsetLadyPMRGCAuk volunteer

If you look at the main PMRGCAUK site pmrgca.co.uk you can get info on local groups, as well as loads more general information. Also if you go into your profile, if you put her locality in, you may be able to find others who are in your area - unfortunately that depends on members putting that info on their profiles! Which a lot don't.

Good luck, your mum is lucky to have you to help.

PMRpro
PMRproAmbassador

Is your mum internet-savvy? There is another lady in her 90s in East Anglia somewhere (I did know but can't remember!) who is very active on another PMR/GCA forum and maybe we could put them in touch.

The support groups are listed here

pmrgca.co.uk/groups/

but I'm not sure how up-to-date it is as I believe at least one of the Essex groups is no longer active. Some are just informal meet-ups I think as opposed to support groups with a programme.

Has your mum been put on pred? Or provided with any form of support/management?

I am so sorry to hear about your Mum. If she is now on pred hopefully that should have a magical effect on the PMR symptoms and allow her to get back some of her va va voom. I think the real thing is to accept she has PMR and to take life easier. To rest when she needs to and not to fight it, but just give in to it. I find a little exercise is a good idea, even if it is just lying in bed and stretching, so you don't sieze up too much. Also to be aware of nutrition while taking steroids which can affect your vitamins and minerals. I have become really interested in this and am now a bit of a nerd and have started reading books on our gut flora. I must bore my friends silly, although some of them have borrowed my books now!

PMRpro
PMRproAmbassador in reply to piglette

Wish I lived round the corner! (I don't really, the view, food and wine wouldn't be as good, but you know what I mean...)

piglette
piglette in reply to PMRpro

Of course if you lived round the corner, you would have to put up with this bad tempered miserable old git on pred!

PMRpro
PMRproAmbassador in reply to piglette

They say likes attract...

What was that comment of yours about you being told to warn people about you not being your usual sunny self when on pred?

piglette
piglette in reply to PMRpro

I think they were being polite in case I bit their heads off!

PMRpro
PMRproAmbassador in reply to piglette

I'm sure I've said it before : we are twins separated at birth

Parijm
Parijm in reply to piglette

I like the sound of your interest in gut flora etc. I aim to eat very healthily with a low carb intake, plenty of fruits, veg, as much fish as I can,always yoghurt in the morning as a lining in my stomach before the meds hit, and of course drink as much water as I can. If I can remember! Mind you a little too much wine than I should!! Hey, you have to enjoy life!

piglette
piglette in reply to Parijm

I understand our gut flora like a drink! The important thing is to have a large variety of them, things like saurkraut can increase good gut flora and also artisan cheeses. Don't get the processed type. In fact mould seems quite good but I think one needs to be sure of what you are eating!

Hi. I met up with some lovely people from this forum at a garden centre near Woodbridge (just north of Ipswich ) all who have pmr and or gca. I can't remember when they are meeting again, but I will find out and message you, or perhaps Sue who arranged the meet will see this and get in contact with you. In the meantime, all best wishes to your mum and you couldn't have found a more supportive kind group of people than those here.

Hello Annie and Cg. I have already messaged cg about the area meetings. Believe there was also another coffee and chat group on the Morrisons side of Ipswich.

Thoughts are with you both and cg's mum. Xx

annie_marie
annie_marie in reply to Soosie56

Hi Sue. Ah brilliant. Hope things are as well as can be with you. Annie x

If your mum can get to Needham Market PMR-GCA Support East Anglia have a meeting on the 20th October. There would be an opportunity to chat to fellow sufferers, then a talk by Dr Richard Watts. 1030 at Needham Market Community Centre.

There are also associated informal groups who meet in Woodbridge and Stowmarket.

I recall there is a local group at Needham Market. Also I believe I was hoping to go to a meeting in Woodbridge a few months ago. I have not as yet met up with local sufferers but I live a couple of miles west of Ipswich. I can only hope PMR does not revisit me at your mother's age. My own mother had, I think, a couple of doses of PMR when she was in her 60's. It's tricky enough to deal with when in your early 60s as I am now. Good luck. This site will be be a great support to you and your mother.

East Anglia, PMR & GCA Support Group,

Support Group Leader and one lovely person.

Maryan Fidler Tel: 01787 379400

They meet in Needham Market.

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