What a fantastic first meeting!! It was wonderful to see so many faces and meet you all, I’m still a little bit in shock as I really didn’t know how many to expect.

Huge thanks to Sheelagh who leads the Salisbury Shakers and Guy who leads the West Midlands Shakers for coming to support our launch meeting, it was really lovely to have you there.

Apologies from Kevin who is a Trustee for the National Tremor Foundation and hoped to be there but was held up at work. Hopefully he will be able to join us next time.

I think everyone agreed that the venue worked well, it’s a lovely room for our meeting. I am waiting for confirmation but am hoping to book the next meeting for Friday June 12^th at 1.30 pm, and I have booked it for longer this time!

Everyone introduced themselves and talked about how Tremors have impacted on their lives. There really was a variety of diagnoses but a few things stood out very clearly, including how isolating it can be, how embarrassing it can be sometimes, how dismissive the medical profession can be, even sadly as in Peter’s situation getting the wrong diagnosis.

I didn’t take very detailed minutes as really it was an opportunity for everyone to meet and get an idea of what the support group is all about, but just a few things to mention…

Mary talked about the Palmer Centre in Chepstow, if you are local it really is a very nice, welcoming place that is well worth a visit.

Sue talked about her ‘risk assessment’ approach to things – I think this is a great idea to apply to situations to decide whether it is safe to do something.

There was some discussion about the DVLA and whether you need to notify them that you have Essential Tremor. I have checked on their website and it seems that you don’t have to notify them BUT it is based on individuals’ situations so if you are concerned at all I would definitely suggest you have a look at the website and put your own particular details in. If anyone has any issues getting on the website, I am more than happy to help you with this at the next meeting.

I briefly mentioned physiotherapy. I have a contact and will look a bit further down the line at getting them to come in to talk to us about what the benefits might be.

Sheelagh kindly brought along some gadgets that she uses to help with everyday tasks, I particularly liked the Spillnot to help carry drinks. The lanyards are also a very useful item to have for travelling etc.

Sheelagh gave Jackie a Beechband to try and Richard gave Peter one to try. It will be interesting to hear what they think of them. There has been quite a lot of negative feedback on them but some individuals HAVE reported that they have helped.

I mentioned the National Tremor Foundation website – if you haven’t done already, it is worth having a look at this.

As above, I will take more detailed minutes next time but to sum up, it was a great first meeting with a lot of positives and I’m very much looking forward to seeing you at the next one.

SPREAD THE WORD!!

I think this is a lovely photo of everyone except Catherine who had to leave just before we took it and me as I was taking the picture!