Can you 'Step Up to the Plate'

Bones, joints and muscles
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Can you  to help others just like you, who are on this journey that nobody ever willingly undertakes.

A Support Group for people with PMR and GCA is looking for Volunteers to help it keep going.  It is located in Cambridge.

 It has been operating for nearly three years, but needs help like yesterday.

Volunteering does not mean you have to work a 40 hour week, more like perhaps 2 or 3 hours.  With meetings currently twice a year.  Some of the members also meet informally, monthly for a coffee and a chat, but you go if you want.

 

You do not need to have a special skill, but if you can do basic book-keeping – brilliant.  Perhaps you were an accountant when you were working.

 If you can keep a register of members - all to the good.  Nearly everybody can keep an alphabetical list of names, addresses, telephone numbers and email addresses.

If you are willing to take the occasional telephone call –  a patient or carer looking for help  - OK you won’t know everything – but you will know where to find out.

If you have any skills into pulling an informal newsletter together – wow.

I know, from experience, that most of you think – or I will be no good at that sort of thing, but hey – how do you know till you try.  You all have experience with computers, otherwise you would not be here reading this post.

I never thought that at 69 I would end up helping to start a support group, but 3 of us did.  Two with PMR and one with GCA.   All silver surfers.  Now 77 and still going strong and yes, we found more people to help, so 6 of us, plus two tea ladies, two raffle sellers and two ladies who keep the record for those attending meetings (record need for Health and Safety) just in case we have to evacuate the building and can count heads.  .

All the volunteers and  have made new friends. 

So, if you are in the Cambridge Area and feel, Yes I could help out,  the more the merrier and the lighten the load and keep it going.

 Send me a PM and I will respond.

PS I looked for an Optimist emoticon - there isn't one. grrrrr

 

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sorry lodger  i live  in west yorkshire. and  no good at book keeping .  but hope you get sorted

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Lodger,

Is that Cambridge, Massachusetts? I live about 4,000 miles away in Portland, Oregon. Would be willing to respond to posts by others. Have only been diagnosed with PMR since December, 2015. Am still trying to get a handle on it. Seems to be harder to find out about PMR in the U.S. Had never heard of it before. No one I know including family knows anything about this disease. If it hadn't been for your forum, I would be so very lost. Thanks to all of you! Linda

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Linda

Cambridge England.   I must remember we have people over the pond and over the channel.

Thank you for asking and you might like to take a look at the National Medical Foundation based in Arizona, as far as I am aware they have 'Chapters' in some parts of the USA.

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Where is West Yorkshire?

There are meetings in Middlesbrough and Gateshead - just in case biggrin

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Thanks so much!! Gosh I

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Oops! Gosh I would love to visit any where in the UK some day! Linda

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Great job you are doing! I live n the USA, or I would sign on.

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Sorry lodger i live in west yorkshire as well, Middlesbrough is about 150 miles away.

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west yorkshire  leeds  /wakefield

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Pauline and Margaret, perhaps when you are feeling much better yourselves you might like to consider setting up a little group in West Yorkshire.  If necessary, Lodger and I will be happy to help you all we can from our experience.  The more local support groups, the better so that people can reach out to each other and not feel alone as they battle PMR/GCA.  I often feel concerned about those without internet connection - for them a local group is a godsend.

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Pauline and Margaret

One day a group might just get going in Leeds.

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Hi Twin

wink

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Mrs O and Lodger, thats a good idea, but as i dont drive Leeds could be a problem, but after saying that there is the train, i will give it some thought no response from my doctors(nobody reponded to my request if any more people in my area had it, only the gentlerman whos carer i saw on the bus is the only person i know off, but i know he has cancer as well, and i only spoke to her on the bus, not seen her since).

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Doesn't have to be Leeds - once you have found where people are you could choose a location that is easy to reach by public transport. But it isn't something you have to get to every week - it's usually every 2 or 3 months. And most most groups welcome partners.

I imagine the Leeds rheumatology department could let other PMR/GCA people know that there were machinations to start a support group - they can't give you names without consent from the patient but they could let the patients know for you and put up a notice in the department - as could any other rheumatology department.

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Eileen is right, does not have to be Leeds, just somewhere central with good transport links.

Rheumatology Depts in three of our hospitals and the Opthamology Dept (which covers the whole of the North East) helped us out.

Two Rheumatology nurses come to one or other of our meetings whenever they can make the time.

The NHS help us as and when they can and we help our NHS.

 

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And good morning to you too, twin!

Lodger, just a thought:  What if our names included an area name, such as LodgerUK/Gateshead - that would enable others to know if someone was living nearby who might wish to meet up for a cuppa and a chat.  I realise that might possibly go against the site rules re anonymity etc - of course, contributors would be free to include it or not.  Just a thought - perhaps Alan will put me right!

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Margaret, yes it is difficult to locate other sufferers at first, especially if GPs won't get involved in agreeing to link up their PMR patients.  The beauty once you have a few contacts is that you can print out posters and get them displayed in prominent areas for other patients to see.  For instance, I have posters on display in my GP surgery, local community centre, hospital rheumy department waiting area, and local Boots pharmacy. 

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I imagine there is no reason why we can't add place to our user name ourselves - there is certainly a request under consideration to have country added to our name bit by the site. 

By the way - is anyone else getting email notifications that don't provide a direct link to the post? In this nasty new, no doubt believed to be "improved" notification banner...

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Hi MrsO,

"What if our names included an area name, such as LodgerUK/Gateshead" 

A fair idea but usernames are limited to 15 characters 

There are plans to have not only country but county/state as part of the displayed user info. In the meantime you can add details to your profile here if it helps https://patient.info/forums/me

Click the Edit button under the About me. Anything you add here will be displayed when a user clicks your avatar if you have made it viewable.

Re the emails - this is in hand 

Alan