Monthly Zoom meeting for all members
This session is one of our regular, informal, Zoom meetings held on the first Wednesday of each month. The meeting is open to all those coping with HSP and you are very welcome to come.
For joining details, please contact the meeting organiser.
Comments 8
Hi, I have recently been diagnosed with HSP (probable), following a number of years of appointments with my GP and eventually going private to a private physio and then neurologist. I am currently awaiting the outcome of a gene test (although I am aware this may or may not provide clarification), and various appointments (including neuro physio/West Midlands rehab clinic/continence nurse), but have been very much left to it. I have been a life-long swimmer, cyclist and runner, although have been unable to the latter for the last year and a half – actually struggling to walk. My older brother has also been experiencing similar symptoms and has been discharged twice as the neurologists were unable to find out what was happening . Following my diagnosis, my brother is chasing this up.
I am feeling pretty overwhelmed, uniformed and isolated. To this end I have been trying to find out more about HSP and came across the UK HSP support group. I have emailed the Birmingham support group as they are slightly nearer to me than the South Wales/Bristol group and Adam Lawrence to ask if there is anyone, I can talk to initially pretty much about HSP and what I can do – particularly on the self-management/exercise. But not heard back yet. Also, with my work hat on (social services/mental health/public health), how I could best track and record my experiences/symptoms (like you have done) to aid my own ‘progress’ and maybe contribute to the bigger picture as you have done.
I would really appreciate any advise/help.
Author
Hi Sue, have you joined any of the HSP Facebook groups? There are lots of people on there willing to share experiences and give advice. The Hereditary Spastic Paraplegia’s Unite Facebook group has over 3,000 members and is an excellent place to start. Have a quick look at the support group links page for more info: https://hspgroup.org/links/support-group-links/
Hi Sue, we’ve just seen your message on the website.
June and I wanted to make contact with you.
June’s email address is
june_masding@ hotmail.Co.uk.
We both help to run the Birmingham group and are happy to have a chat.
Kindest regards
Penny and June.
Hi both, sorry for not replying earlier. I had it in my head I would get an email reply. Thank you the support group meeting and Facebook link Jenni. I will try and join the next meet in April. And thank you also June and Penny, I have emailed you and hope it finds you well. Hopefully we can catch up soon.
Kind regards
Sue
Are there groups in the States that you would recommend?
🙏🏼
Author
You can find a list of worldwide support groups, including the American SP Foundation at https://hspgroup.org/links/support-group-links/
Hi I am currently looking after a young lad 21 I am his support worker , he has hsp 11 I’m trying to find a friend for him who likes gaming and day’s out. He is in a wheelchair . He hasn’t got any friends. And there not much for him to do access for wheelchairs is not good. If you could help that would be great.
Many thanks.
Author
Hi Gina, have you joined any of the Facebook groups? If you follow this link the first two would be a good place to ask: https://hspgroup.org/links/support-group-links/