Maidstone support group

Hi,

I've just got home from attending my first support group. It was well worth travelling the distance to get there and nearly ending up in London on my way home, stupid satnav broke down. So nice to know you're not alone. Looking forward to the next meeting in January.

Ange x

15 Replies

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  • Really pleased to hear you found it well worthwhile. It is excellent you no longer feel alone.

    Sorry to hear about your journey home but glad you made it in the end.

  • We bought a satnav last summer - and it has been very amusing using it on journeys we know like the back of our hand ;-)

    I saw an article in the paper that Garmin has an error in the latest download. If there is a traffic problem on your chosen route it provides you with an alternative route. Via Preitenegg. A small village in Austria. Not even the Austrians know where it is!

    Oh yes - and glad it got you to the meeting even if had an epic fail on the way home...

  • It was lovely to meet you and I look forward to seeing everyone again in January. We certainly seem to have great support in Maidstone- 18 last month and 18 this month too- so far so good!

  • is there any support group near ruislip or middx.

  • bullyboy, the nearest group to Ruislip at present is the Surrey group that meets every two months in Chertsey. There is also a group that meets in/around central London. If you are interested in the Surrey group, please let me know and I can let you have further information.

    For anyone else who may be interested in finding whether there is a group that meets in their area, you will find a list of all groups on the following link:

    pmrgca.co.uk/groups/

  • Hi ballyboy

    Yesterday I replied in another part of the forum to a message from Chynnamoss who lives in Solihull, West Midlands and is keen to attend a group. I replied as below:

    21 hours agopennyw

    Dear Chynnamoss

    There are now 17 support branches each run by volunteers who have or have had PMR or GCA. They are supported by PMRGCAuk. Sadly there isn't one at the moment in the Birmingham area. BUT the charity has about 20 members living not far from you in the West Midlands and maybe there are others on our HealthUnlocked forum.

    We've been running a branch in Bromley, Kent for a while. Recently we split the branch into four smaller branches in Kent & East Sussex. Now more members can attend meetings - Maidstone, Hastings, Sevenoaks and Orpington. Members come along to compare notes, share local information, they no longer feel isolated and they meet new friends - and the friends understand that they may look well but that isn't how they necessarily feel!

    If you would like to be part of a new branch in the West Midlands we can help by putting you in touch with others who feel the same.

    We will help you to find a suitable venue, assist in getting the branch off the ground; we can put notices into local media and information on the charity's website and in our newsletter.

    It only takes one, two or a few who want to meet up! So many people feel like you.

    Email me at polymyalgiaplus@gmail.com and we will do as much as we possibly can to help you find some others in your area to meet up with.

    And if you're reading my reply but don't live in the West Midlands the same offer is there for you. Email me at chair@pmrgcauk.com to find out if we have members living in your area. PMRGCAuk wants everyone in the UK to be able to be part of a branch if they wish to.

    Details of existing groups are on the Charity's website: pmrgca.co.uk/groups/

    Penny Denby

    Chair of Trustees

    PMRGCAuk

  • Hi Ange. Yes between this forum and a good support group we are well blessed. I've only been to one meeting and our next one isn't till March but I won't let anything interfere with my going to it. How did you get on with your Pharmacy? It's made me check that I'm given the right ones now. I am down to 9mg full time now and will get Xmas out of the way before going for 8.5. Glad that you're keeping well. Mary x

  • Hi, I had quite an argument with the shop assistant, she really didn't understand how dangerous giving me the wrong dosage was. I got them changed in the end and the pharmacist came and apologised, which I thought was really nice of him. I check my prescriptions every time now.

    I've got one more week at 10mg then reducing down to 9mg. Fingers crossed. Take care Ange x

  • Having been given the wrong tablets is NOT something I would discuss with counter staff - straight to the pharmacist with that.

  • Hi, this particular counter assistant was not letting me get anywhere near the pharmacist. I'm changing my chemist now as I've had too many issues over my steroid prescriptions.

  • I hope you made that clear to the pharmacist?

  • Hi Angex05. Are you the lady from Folkstone that sat next to me at the group? Sorry I forgot your name whilst there as all a bit overwelming although brilliant at the same time to meet so many in the same boat! I too am looking forward to the next meeting in january!

  • Hi, yes it's me, Ange. Hope you're feeling ok?

  • Oh good! Yes I am ok thanks. I hope you are too. Sorry to hear about your journey home. I need my sat nav today as hav a course in Faversham!! Take care and catch up soon! Tracey x

  • It's so lovely to read how happy you all sound after meeting up and, no doubt, sharing your PMR/GCA experiences with each other at Maidstone. A problem shared is a problem halved! It sounds at though your numbers are growing quite quickly. I started up with 12 people getting together at a riverside Inn over 4 years ago - now have 63 members! So these support groups are definitely proving their need, and, if anyone is interested in starting one up in their area, even just meeting in a cafe for a cuppa and a friendly chat, there will be plenty of help available from our Charity, PMRGCAuk. Penny's post above gives details of how to find other members residing in your area.

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