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.

 

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Date

Aug 03 2022

Time

7:00 pm
Category

Organizer

Ian Bennett
Phone
07941 535282
Email
bravoechonovember@btinternet.com
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Comments 6

  1. 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.

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    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/

  3. 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.

  4. 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

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      Author

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