Write up by Kevin Mills
The meeting took place on Sunday 9th May at 3pm and present were the following:
- Kevin Mills (host)
- Ian Bennett (host’s adviser)
- Dean Fowler
- Allan Thomas
- Peter & Sandra Bateman
- Hugh Stewart
- Vicki Garrat
- Jennifer and Lilly Rice
I decided to have an open ended finish time, just in case any members needed to discuss anything at length. I started by introducing myself and telling everyone why I wanted to host members meetings for the Wales area, (no meetings here). Because we didn’t know each other, I asked everyone to introduce themselves to each other, but I did stress that if anyone didn’t feel comfortable with speaking then just tell us and we’ll move on. I also made sure to ask all members permission for their names to be listed above to keep in line with GDPR.
We chatted about most things but mainly:
- Pain that may be concerned with HSP
- Which Gene people suffered with
- Any other conditions, one of the members suffered from HSP and also ATAXIA, and another member hadn’t as yet been diagnosed with a Gene (I gave him the name of my Neurologist so that he could maybe find out)
- We also talked about Raynaud’s disease, which I later researched
- We discussed all the symptoms that we had, such as Gastro complaints, Clonus etc. and shared information and treatments (treatments that maybe work for them).
Some members were struggling to get around so we discussed different options, and due to the fact that we had Ian and Lilly on hand to give us some info on that, we could have an in depth discussion.
Once we had been online for a couple of hours, people started to excuse themselves and we gradually thinned out and said our goodbyes and hope to see each other soon, either through face to face or on zoom.