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.
Hi, my name is cjoy88317!
Options
cjoy88317
Community member Posts: 16 Listener
Hello everyone
Comments
-
Hi @cjoy88317
Welcome to the community Do you want to tell us a bit about yourself?Scope
Senior online community officer -
Happy too I’m 40 years old and a father of 4 I have been suffering with cerebellur ataxia for about 2 years which is a rare neurological disorder affecting balance coordination and speech to name a few I feel an online community will be a good source of advice and support
-
It's great to meet you! We have a friendly and supportive community here so jump in and get involved, if you have any questions, please don't hesitate to askScope
Senior online community officer -
Hi @cjoy88317 welcome to the community!
I have Ataxia however neurologists can't specify which type, I did have major co-ordination issues however these have improved over time with intensive physiotherapyDisability Gamechanger - 2019 -
I am in the 100000 genenode project for a long research project to find which type I have, I am now using a walker eventually in a wheelchair but exercise has been a great help
-
I recall another member being in the same project, I will have a look to see if I can find them! I can now walk about 1m with a walking frame but mInly use a powered wheelchair. Do you use Lycra sleeves/shorts to help with the co-ordination? I do and they have helped me improve so much!Disability Gamechanger - 2019
-
I have never heard of them shorts do tell me more
-
Any chance u could share with ur mobility history and the stages u went through
-
I will have a look for the packet that they came in then tell you a bit more about them - I'm still looking for Lycra shorts a bit similar to what cyclists wear.
Sure, not a problem.
I think it was late March last year that I started to have balance issues. Over the coming months I was beginning to walk like a 'drunk' and had terrible foot placement. September time I became wheelchair bound. Then having quite a few falls.
I did go to the Neurology Hospital in London for various tests such as spinal MRI, brain MRI, lumbar puncture, blood tests, nerve tests. My diagnosis was I had severe nerve damage and Ataxia. However, I have had to battle against Transverse Myelitis, meaning my spinal cord became inflamed. Affecting the cervical and thoracic region. I had to learn to reach, sit up, stand up and walk again. Which I have done but overall it's took 6/7 months to do this.Disability Gamechanger - 2019 -
Blimey u have had a rough time over a short period, really appreciate u telling me ur story I don’t know anyone with this condition
-
Cerebellar Ataxia or Transverse Myelitis?
Quite a few members have the same type of Ataxia as yourself!Disability Gamechanger - 2019 -
CA, Just chatting to people with disabilities is new for me too
-
I know what you mean, felt so overwhelmed when I first joined, but 8 months later I have gotten to know some pretty amazing people. To begin with you think you're alone, but on here you're notDisability Gamechanger - 2019
-
By the way I just looked at the packet that my Lycra sleeves came in, I think it is DMO but NHS referred me to them so it might be worth talking to your GP about?Disability Gamechanger - 2019
-
That’s very comforting. As much as people say they understand people don’t who aren’t in the same situation or have the same condition really don’t know
-
Awesome thanks
-
Hit the nail on the head there! Let us know if you have any luck with the Lycra!Disability Gamechanger - 2019
-
Will do
Brightness
Categories
- All Categories
- 13.4K Start here and say hello!
- 7.1K Coffee lounge
- 107 Games lounge
- 486 Cost of living
- 4.6K Disability rights and campaigning
- 1.9K Research and opportunities
- 230 Community updates
- 9.7K Talk about your situation
- 2.1K Children, parents, and families
- 1.6K Work and employment
- 810 Education
- 1.7K Housing and independent living
- 1.4K Aids, adaptations, and equipment
- 672 Dating, sex, and relationships
- 377 Exercise and accessible facilities
- 859 Transport and travel
- 32.3K Talk about money
- 4.6K Benefits and financial support
- 5.3K Employment and Support Allowance (ESA)
- 17.3K PIP, DLA, and AA
- 5.1K Universal Credit (UC)
- 6.5K Talk about your impairment
- 1.8K Cerebral palsy
- 891 Chronic pain and pain management
- 187 Physical and neurological impairments
- 1.1K Autism and neurodiversity
- 1.3K Mental health and wellbeing
- 329 Sensory impairments
- 835 Rare, invisible, and undiagnosed conditions
Complete our feedback form and tell us how we can make the community better.