Hi, my name is penguinmom!

penguinmom
penguinmom Community Member Posts: 2 Listener
in Start here and say hello
Hi
Ive found this forum quite by chance and I'm so pleased I have.
My 35 year old son has HSP it started about 9 years ago,  small falls, developing into dragging of the one leg and a profound gait, he was often refused entry into pubs because the staff would think he was drunk. Over the last 9 years it has become worse he walks with sticks or crutches, he has the restless legs and cramps, being prescribed baclofen, which has its own side effects, urgency for the loo or not being able to go.
My son has been diagnosed with uncomplicated HSP, it effects his legs only, our problem is he is hardly ever seen by any consultant or physio his basically left to get on with it, which he does and never complains, its me who worries,  what his future will be like, how bad will it get and i wont be around forever.
He doesn't know ive joined this forum but ive done it so I can get a better insight into how you wonderful people cope and have you found any treatments or things that make your life a little easier, I would really be interested.

Thank you for reading 😊

Comments

  • Jimm_Alumni
    Jimm_Alumni Scope alumni Posts: 5,686 Championing
    Hi @penguinmom, welcome to the community! It's always nice to hear that people are pleased at finding this place :) 

    Does he receive any benefits at all? As it sounds like this could come under the mobility criteria? I can understand his mindset, I used to have the same I think. I'd try to avoid getting help as I thought it was "making a fuss". Took me a long time to think otherwise! There is quite a bit of support out there, not just the NHS. He can contact his local authority to do an assessment of his home too to see if he needs any adaptations made for instance.

    Thank you for writing all that out. I hope we can help you, and your son through you :)

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