If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.
Find out how to let us know if you're concerned about another member's safety.
Find out how to let us know if you're concerned about another member's safety.
spastic paraplegia
ttillcock
Community member Posts: 5 Connected
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
Comments
-
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.Online Community Co-ordinator
Want to tell us about your experience on the online community? Talk to our chatbot and let us know.Concerned about another member's safety or wellbeing? Flag your concerns with us. -
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.
Brightness
Categories
- All Categories
- 13.3K Start here and say hello!
- 7K Coffee lounge
- 101 Games lounge
- 482 Cost of living
- 4.6K Disability rights and campaigning
- 1.9K Research and opportunities
- 230 Community updates
- 9.6K Talk about your situation
- 2.1K Children, parents, and families
- 1.6K Work and employment
- 806 Education
- 1.7K Housing and independent living
- 1.4K Aids, adaptations, and equipment
- 666 Dating, sex, and relationships
- 374 Exercise and accessible facilities
- 845 Transport and travel
- 32K Talk about money
- 4.6K Benefits and financial support
- 5.2K Employment and Support Allowance (ESA)
- 17.1K PIP, DLA, and AA
- 5K Universal Credit (UC)
- 6.4K Talk about your impairment
- 1.8K Cerebral palsy
- 885 Chronic pain and pain management
- 183 Physical and neurological impairments
- 1.1K Autism and neurodiversity
- 1.3K Mental health and wellbeing
- 328 Sensory impairments
- 832 Rare, invisible, and undiagnosed conditions
Complete our feedback form and tell us how we can make the community better.