Exeter Support Group?: I was diagnosed with GCA in... - PMRGCAuk

PMRGCAuk

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Exeter Support Group?

Tanpopo profile image
20 Replies

I was diagnosed with GCA in October and have received good care from my local GP surgery here in Moretonhampstead, but I would like to meet fellow sufferers to compare notes about treatments etc. and offer mutual support etc.

I am only 12 miles from Exeter but my nearest support groups are in Taunton or Plymouth which is over an hour's drive away. Are there any fellow sufferers in Exeter who would like to meet up for a coffee and a chat? If there is enough interest, maybe we could start an Exeter based support group.

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Tanpopo profile image
Tanpopo
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20 Replies
PMRpro profile image
PMRproAmbassador

What a good idea!! Good luck!

Tanpopo profile image
Tanpopo in reply toPMRpro

Thank you!

Portugal123 profile image
Portugal123

Hello. I was diagnosed with GCA in May last year. I do attend a volunteer support group about every three/four months but I am the only one with GCA, the others have PMR. I would love to be in contact with someone with GCA to compare notes etc. I am in Plympton Plymouth.

Tanpopo profile image
Tanpopo in reply toPortugal123

I will look into somewhere where we could meet and keep you posted. Would a Saturday afternoon be convenient for you? I am still working, so would prefer weekends.

RedRum1968 profile image
RedRum1968

I’m very close to Exeter (near Crediton) and I’d be very interested in joining a support group. I’ve yet to meet anyone with PMR! Sometimes family just don’t understand sadly.

Tanpopo profile image
Tanpopo in reply toRedRum1968

Good to hear from you. I am looking into where we could meet in Exeter and will keep you posted. Would a Saturday afternoon be convenient for you? I am still working, so weekends would be best for me.

alangg profile image
alangg

Lovely Moretonhampstead! I was brought up there. Now in Exeter and had PMR for a few years so still look at this forum in the hope that my random comments can help people. Good luck!

Tanpopo profile image
Tanpopo in reply toalangg

Good to hear from you. I am looking into where we could meet in Exeter - any suggestions welcome - and will keep you posted. Would a Saturday afternoon be convenient for you? I am still working, so weekends are best for me.

RedRum1968 profile image
RedRum1968 in reply toTanpopo

yes Saturday afternoon would work for me :-)

MillMoor profile image
MillMoor

Before Covid I know Wendy was trying to find someone to start an Exeter group. Look up the Charity website as the info is on there.I live in Hemyock nr Cullompton.

Tanpopo profile image
Tanpopo in reply toMillMoor

Not sure where to look for the information. Would you be interested in joining? I'm hoping to meet on a Saturday afternoon. Will keep you posted.

gardenning profile image
gardenning

Hi there, I'm not so far away geographically, nearer than Taunton and could meet in Exeter. I've had GCA and PMR for four and a half years. I have to say it's been a bit of a journey health-wise. If you'd like to link up if be happy to share more

Tanpopo profile image
Tanpopo in reply togardenning

Thanks for your response. I will do a bit more research and keep you posted.

Rugger profile image
Rugger

When we started the Yorkshire support group, we were advised to pick a venue near where we lived! How about looking for somewhere in Bovey Tracey? Good luck.

PMRpro profile image
PMRproAmbassador in reply toRugger

Depends a bit on the local geography though doesn't it? Someone in Budleigh Salterton might manage to get to Exeter but would think several times about Bovey Tracy.

Rugger profile image
Rugger in reply toPMRpro

Yes, we did find that with our initial venue in Ilkley. However, people do travel there from far and wide, as transport links are good. Later, we added in another venue in Leeds and now Sheffield and York. The only thing about larger city venues is finding a suitable venue, access and parking etc.

All good wishes to Tanpopo. We have all gained such a lot from starting a group.

Tanpopo profile image
Tanpopo in reply toRugger

I think Exeter is fine for me and would be more accessible to others in the area. Thanks for your good wishes!

suenewberry profile image
suenewberry

Good evening

I think Exeter would be an excellent idea. My PMR has been in remission now since 2016, but I know can always appear again. The osteoporosis society use a room in St Leonards church, but not sure if this can be hired on Saturday. It depends on how many. You could initially meet in a pub - say the Harvester in Exeter. The AA hire rooms around the church in Exeter on Saturday mornings, and I think they are quite reasonable.

Pollyanna16 profile image
Pollyanna16

Hi there, best wishes for starting up a group in Exeter. Our first meeting was over coffee in a Premier Inn in Camborne, Cornwall & then as a couple of us were members of Truro golf Club we hired a room there for 2 hours once a month. I think that was about 9 years ago, we can now get anything from 10 to 20 people coming with PMR & GCA, I think the must beneficial thing is to be able to chat to others going through similar experiences with drugs, doctors etc. People travel from as far away as Penzance & Bodmin. We really need more groups in the south west & so all the very best to you. Charon at PMRGCAuk will happily provide leaflets etc.

DogAgilityObsessed profile image
DogAgilityObsessed

Wow! I've just seen your post. Moretonhampstead is my surgery too! The lovely Dr Tom fast tracked me through the RD&E last month and I too was diagnosed with GCA. Definitely up for a meet. If Exeter, I've been to large group meetings at The Mill on the Exe which has lots of space (although maybe less so on Saturdays) plus a goodish size car park.

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