Saturday 16th October 2021 – 2pm
Report by Penny & June
Everyone welcomed. Only four people this time. We welcomed our newcomer.
We talked about:
It was shared – where in the body injections had been received, benefits from etc. Some had in upper thigh, others in feet/ankles/toes.
It is at The Rehabilitation Centre in Selly Oak, Birmingham where Botox is given, and would appear that not very much assessment is being given following treatments. It was suggested that they should assess the results more regularly and compare them every few weeks to be able to get a better picture/assessment of how the treatment is working – which they don’t do at present.
Two members have received Botox in different parts of the body, which they find have helped to relax the spasticity.
We all agreed that exercise was essential too – use it or lose it!
Walking aids/Wheelers/Rollators etc
We found we all used a variety of walking aids to help us every day, each one of us find some things better than others – we are all unique!
We shared the different types we all used and hope that when we can get together for a meeting, that we may be able to try each other’s out.
The Rehabilitation Centre in Selly Oak, Birmingham does have several walkers/wheelers/wheelchairs that one might be able to ‘try out’ – but one has to have a referral to the centre from their GP/Consultant in the first instance to be able to attend.
We found that at some point we had all tried this, with different results/opinions – again, we are all unique and have different needs. It was really good to share.
Families with HSP
We shared with each other, that other members of our families are also affected by HSP – some of us with several/many members, others with a few or none. We found that although there may be a few in one family, that each were differently affected – some greatly, others not so much, and all at varying times of our lives.
We concluded our meeting with the hopes for our next meeting to be a face-to-face at the Kenrick Centre in Harborne in Spring 2022 – Covid permitting.
We will advise John Mason who will be sending email details to all within the 50-mile radius – and please do look out for details on our website or Newslink.
Kindest regards to all,
Penny & June
I have just just been diagnosed with HSP (probable) after a number of years of returning to my GP and finally going private. I am awaiting an outcome for a genetic test (although I am aware this may or may not clarify things) and appointments with a variety of health professionals for my symptoms, but feel very much left to deal with it.
I wondered (and hoped) if there is anyone I could talk to through your support group, as I feel pretty isolated and would very much appreciate some one to talk to.
I live in Knighton, Powys, and my ‘home town’ is Burbage Leicestershire – the former about 60 miles from Harbourne. The South Wales and Bristol support group is further away.
Hi Sue, if it’s of any interest there is a regular Zoom meeting on the first Wednesday of every month. The next is Wednesday, 2 March 2022 at 19:00 (7pm). Find out more at https://hspgroup.org/events/monthly-zoom-meeting-for-all-members/