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spastic paraplegia

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ttillcock
ttillcock Community member Posts: 5 Connected
edited October 2021 in Rare, invisible, and undiagnosed conditions
Hi everyone, I’m just looking for some advice or guidance I’m 19 years old and have had issues with walking and chronic pain in my legs for a few years and I have been diagnosed with spastic paraplegia which is highly likely to be the hereditary one. I’m lucky in that I can walk 45 minutes without too much pain while walking my dog but over time the length of time that I can walk without pain is deteriorating and so is the strength in my legs I’m just curious as to what to expect or any advice really my job is a in a restaurant and shifts can reduce me to tears in pain. I haven’t been given much information of the condition and I was hoping there is a community on here who could help? Hope everyone’s safe and well during this lockdown 
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  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    edited March 2021
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    Hello @ttillcock and welcome to our community  :)

    I'm not too familiar with hereditary spastic paraplegia (HSP) but that sounds like a lot to deal with.  Are you under the care of a specialist team?  And, has your GP given you much guidance around how to manage?  If not, I'd definitely contact them to see if more can be done to help.  

    There is an organisation called the HSP Support Group that you could join for peer support and advice.  While one of our new members @Sasha21 recently told us she has HSP on this thread. 

    In relation to work, are your employers aware of your impairment and have they made any reasonable adjustments to help?  It must be awful ending shifts in tears and if you have a conversation with them about that then they have duty to consider making changes where they are reasonable - for instance having additional breaks to rest your legs.  Would you feel comfortable speaking to them about that?

    I hope you are doing well today too and please let us know how you get on.

    Just to add, I've moved this thread to our Neurological conditions category and if you browse this section you will find others who share having HSP.  
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  • ttillcock
    ttillcock Community member Posts: 5 Connected
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    Hello @Cher_Scope thank you for your reply I had only received my diagnosis yesterday after my test results came through. I have a meeting with my neurologist in a couple weeks so I’m hoping I will get more information then. 

    I’m currently arranging a meeting with my work in hope to receive some aid and help with managing it with them. My work knew I had an issue but without a diagnosis I felt I had no leg to stand on in asking for things from them previously. 

    I haven’t yet contacted my GP I had not thought of contacting them yet so thank you for that bit of advice. 

    Thank you for moving the category I wasn’t sure of where to put it to start with.

    I am well today thank you I hope you are well too. 
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