Zoom meeting for All

Write up by Ian Bennett

I was delighted that 20 members joined me for the zoom meeting for all members on March 14th because when I’d originally planned the event, I hadn’t realised it was Mothering Sunday.  We had members from all over the UK, including four from Scotland. 

Members were asked to introduce themselves and in doing so many interesting topics were brought up and discussed.

Wheelchairs were an early topic of conversation and if independence is the aim, the importance of getting a good quality, light one.  I recommended Kuschall, RGK or Quickie chairs to a lady who was interested in acquiring a quality chair and I showed her pictures of my own.

Exercising and motivating one’s self for exercising were discussed.  A few of the members present spoke very highly of swimming and tried to lower the concerns that one member had of swimming and hopefully tempt her into the pool.  A member from Scotland highlighted that she’d tried homeopathy at considerable expense but had found that it had provided her with no benefit whatsoever.  A couple of members also spoke highly of hydrotherapy.

A member from the south informed us that he was due for his first treatment of Botox and wondered if others present had had any experience of this.  Several in attendance have had or are having Botox to varying levels of benefit and they shared their experiences.

The pros and cons of using Baclofen was also discussed and this led to discussions on natural treatments such as CoEnzyme Q10.  A couple of people present on the meeting regularly take CoEnzyme Q10 and this raised a bit of interest amongst others.

Functional Electrical Stimulation was also discussed, a member in the North of England was looking into it and was interested to hear the experiences of FES from others.  Several present, myself included have used FES so we discussed our experiences.

One lady present informed us that sadly she was very low and that attending the meeting had made her day.  I informed her that we’d try to conduct the zoom meetings regularly.  This showed to me that these Zoom meetings are not only a good way of sharing some very useful tips and information relating to HSP, but they’re also important in simply getting people together in these strange times where we’re all very restricted.

I thought the meeting went really well but that was a credit to everyone present because they all contributed.

The meeting lasted for two hours and I hope to see you at the next!

Comments 3

    1. Post

      Area meetings normally take place twice a year, with additional nationwide events like the one above taking place ad-hoc. Events are currently being held virtually due to Covid-19. Take a look at the events page for details of upcoming events.

  1. I’d like to attend the next one. I too have tried a ton of things and would love to share. Thanks for doing this!!

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