Birmingham meeting report

9th April 2022

Meeting report by Penny and June

We would have loved to have had a face-to-face meeting here in Birmingham in April but the meetings are held in a Day Centre Facility and Covid restrictions still haven’t allowed us to return there as yet. We are hopeful for October.

Instead, we had another super Zoom chat. Only 4 of us, but it was lovely to welcome a new member to the group! We enjoyed lots of discussion on a wide range of topics. We chatted about various aids our members use, one being a brace worn on the foot/ankle- called Orliman. It attaches to the lace of a shoe and helps to maintain the foot in a level position when walking to help with drop-foot. Again we chatted about F.E.S.(Functional Electric Stimulation), how it works for some and not others and how differently each individual can be affected by HSP.

We have 3 members of our group who live a fair distance from Birmingham and so aren’t able to come to our gatherings very often, but it turns out that they all (including our new member) live within about a 30-minute drive from each other!!  We are delighted that with them having joined in our little zoom chat, that it has united a small group of folks who have felt very much on their own with HSP. We have all planned for the five of us to meet up in May, and to share the day together at a Garden Centre 🙂

Our new member questioned if Researchers in HSP networked their findings/results and how much general networking there was among Consultants. We discussed how difficult it can be in coming to terms with a rare condition, especially when hospitals/consultants either don’t know very much about the condition, or don’t have any information to give you upon diagnosis. We were able to answer some of her questions and encouraged her to keep asking. She says that she  is very happy to have found our Support Group and is looking forward to meeting everyone in the future.

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