REPORT FROM THE JANUARY GATHERING
Top of the South Coffee and Chat Gathering
10.30 at Happyz – Alchemy Arts Centre Richmond Sunday 31st Jan 2021
Tony/Vivienne/Gareth/Michael and Heather Clifford/Murray and Barbara Brown/ Chris and Leanne Gamble/ David Little/ Graeme Palmer/Sarah Heath/Ray and Michelle Watson (Blenheim)/Harry Cockburn (Northland AHV)
Without doubt having Gareth attend the get together was a draw for some of the attendees and true to form he answered all the questions that were put to him – in one case arriving at a new diagnosis of a member who had been diagnosed with Miller Fisher and couldn’t understand why it was taking so long ( over a year) to make a decent recovery – Gareth’s “over the table” advice was that it was a severe GBS attack that had also affected the facial muscles and would take a much longer time to effect a full recovery- perhaps not what the member wanted to hear but he went away less worried about his current condition and reconciled to a longer recovery.
Cannabis, of course, was discussed and interestingly was NOT recommended by those that (allegedly) had tried it as a pain reliever – largely it would seem because of the uncertainty surrounded the level of THC in the product that had been sampled and its potential/experienced side effects.
Gareth mentioned the current drugs and medications that are commonly used to try and manage pain in GBS patients but conceded that sometimes even a “cocktail” of these does not produce the result hoped for.
Fatigue was a major topic of discussion and all present survivors confirmed it was still an issue for them. Gareth outlined a study that was being considered by the Group to come up with an exercise routine that survivors could follow to help manage their fatigue – there was 100% support for that study to proceed.
We discussed the age profile of the Group – recognising that there was a deficiency of “younger” members – a trend also reported by the UK Group – and how we might better “reach” the younger members with information about the Group. Whist the website was much improved and cell phone friendly as Harry pointed out the younger generation treat Facebook/Twitter/Instagram etc etc as a normal part of their life and to reach them we must engage in ways they can relate to.
It was agreed that Tony would raise the concept of a “Young Survivors” advisory Group with the Board – to be recruited via Facebook and the website and to communicate via these media and Zoom to gather ideas from them about how best to reach them with relevant information about the Syndrome and Group activities.
A surprise awaited two of the attendees who had known each other professionally for many years with neither realising that they were both GBS Survivors. That took the conversation in a discussion about some form of “outdoor wear” recognition .e.g. lapel badges as Rotary do or suitably “vibrant” T shirts with a GBS label – both of which we have done before but maybe now is the time for a revival?
With Coffee and eats consumed the meeting closed about 1230hrs