Hi, my name is ian.diagnosed with Spastic Paraplegis,be nice to correspond with fellow sufferers — Scope | Disability forum
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Hi, my name is ian.diagnosed with Spastic Paraplegis,be nice to correspond with fellow sufferers

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ianroberts
ianroberts Community member Posts: 2 Listener
edited February 2 in Start here and say hello!
I am 62 years old and I have been diagnosed with Spastic Paraplegis and feeling a bit lone in the world as the NHS have no idea what has caused it and have no idea what condition I am suffering from and how my conditions will get worse other than they will get worse.  It would be nice to correspond with fellow suffers, be it that I wish no one else has this conditiob

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  • Ada
    Ada Scope Member Posts: 14,219 Disability Gamechanger
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    Evening @ianroberts I just nipped in to say hi and a very warm welcome from me. Hope to see you around our coffee lounge 
  • Albus_Scope
    Albus_Scope Posts: 4,194 Scope online community team
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    Hey there @ianroberts and welcome to the community from me too. :)

    I'm sorry to hear you've been feeling alone. We're all a lovely, friendly bunch here and are always about to chat. I recommend our coffee lounge and games rooms for some chats and fun. 
    Albus (he/him)

    Online Community Coordinator @ Scope

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    Neurodivergent.
  • penguinmom
    penguinmom Community member Posts: 2 Listener
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    Hi Ian Roberts my son has Hereditary Spastic paraplegia, his started when he was about 26 his 35 this year, he walks with crutches or sticks, he has uncomplicated HSP meaning it just effects his legs, i think there are around 80 mutations of this disease.
    Have you been to see a genealogist yet?
    In my son's case we think it came from my father and grandfather, I dont have it but would more than likely be the carrier, which i will forever feel terrible guilt.
    Im sorry you are feeling alone and a bit up in the air at the moment, especially as you dont know what the future holds, try to stay positive they are finding cures or treatments every day for many things so dont give up hope.
    If there is anything I can answer i will try my best 
    Take care 
  • Ada
    Ada Scope Member Posts: 14,219 Disability Gamechanger
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    Just nudged in to say hello and it’s a very warm welcome from me 
  • ianroberts
    ianroberts Community member Posts: 2 Listener
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    Hi there, feel a bit despondent sometimes as quite frankly I feel like the medical profession simple says you have this problem, no idea what type of spastic parapaleses you have, it's likely to get worse, no idea of timescales etc. Fortunately I am signed off from work and still get paid some of my salary but they keep thinking I will get better etc. I know its horrible having this but am interested in whether there is anything I could take or do to help with my condition 

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