Get back on my feet without the use of support

Neal4683
Neal4683 Online Community Member Posts: 2 Listener
edited June 2020 in Everyday life
Hiya everyone. I have HSP and was diagnosed with it from the age of 3. I'm now 37 and daily life consists of getting around with 2 elbow crutches and for long journeys I use a scooter. I had a intrathecal baclofen pump fitted last year but finding it has caused me more issues since having it fitted. Just wondering if anyone knows if there are ways to get back on my feet without the use of support. 

Comments

  • emmarenshaw
    emmarenshaw Online Community Member Posts: 697 Empowering
    Hi @Neal4683 welcome to the community. I’m Emma, one of the Community Champions who are here to help and advise. I think it might be a good idea to get in touch with an OT so that they can assess and advise you. 
  • steve51
    steve51 Online Community Member Posts: 7,121 Championing
    Hi @Neal4683

    Welcome to our online community/family.

    I am one of a team of Community Champion’s here at Scope.

    Here is some info from the nhs website that may be useful for you!!!!!

    https://www.nhs.uk/conditions/hereditary-spastic-paraplegia/

    @steve51
  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    Hi @Neal4683, how are you doing? Great to have you here. :)

    I'm sorry you haven't had much luck with a baclofen pump. Have you discussed this with your doctor? 

    Also, are you in touch with other services like occupational therapy or physio? 
  • Neal4683
    Neal4683 Online Community Member Posts: 2 Listener
    Hiya Chloe thanks for getting in touch ? before the pandemic I was having physiotherapy every week and do them every day at home, I haven't been able to speak to my consultant yet but I am on the waiting list to be seen. 
  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    Hi @Neal4683, I'm glad the support was there. It must feel odd to no longer have that there at the moment

    I hope you are able to see your consultant soon. Please do let us know how you get on. :)