Hi, my name is cjoy88317!

cjoy88317

Hello everyone 

Sam_Alumni

Hi @cjoy88317
Welcome to the community Do you want to tell us a bit about yourself?

cjoy88317

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 

Sam_Alumni

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 ask

Ami2301

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 physiotherapy

cjoy88317

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 

Ami2301

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!

cjoy88317

I have never heard of them shorts do tell me more 

cjoy88317

Any chance u could share with ur mobility history and the stages u went through 

Ami2301

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.

cjoy88317

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 

Ami2301

Cerebellar Ataxia or Transverse Myelitis?

Quite a few members have the same type of Ataxia as yourself!

cjoy88317

CA, Just chatting to people with disabilities is new for me too

Ami2301

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 not

Ami2301

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? 

cjoy88317

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 

cjoy88317

Awesome thanks 

Ami2301

Hit the nail on the head there! Let us know if you have any luck with the Lycra!

cjoy88317

Will do