Get back on my feet without the use of support

Neal4683 · June 2020

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.

emmarenshaw · June 2020

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 · June 2020

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_Scope · June 2020

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 · June 2020

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_Scope · July 2020

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.

Get back on my feet without the use of support

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