Ticks, Tourettes and Tribunal.

[Patric65]

I have been diagnosed with tick disorder for the last 3years, I am 51. The neurologist related it to Tourettes. I'm now going to a tribunal for ESA in 4 days and would like to know how best to approach this. I have help from a local charity but am quite anxious about losing benefits and not be able to support myself if the result do not go in my favour. Any advice would be helpful. Also does anyone know of any group in the Norwich area. Thanks.

[rickcricow]

I'm a 64 yr old male with Tourette's. I don't know what you mean by a tribunal for ESA, but am happy to help in any way if you have questions. Good luck!

[Patric65 in reply to rickcricow]

Hi Richricow

ESA - employment support allowance tribunal help with getting some form of benefit that can support finding other working option when previous employment is no longer possible. It works on a points system in the UK. I'm not sure if I will qualify but I feel I may be limited with other employment options.

My tics began 3 years ago. I have vocal and motor ticks, face contorting, blinking, the biggest problem is the head jerking which is crippling my neck and shoulder and reigniting and old arm injury as well.

How is your tourettes? How does it trigger and what do know in terms of managing the condition?

Thanks for your reply.

[rickcricow in reply to Patric65]

Hi, I'm sorry I didn't reply sooner. I have noticed tics since I was about 8 years old but didn't get diagnosed until I was 26.

I have the same tics you have described and at various times have had shoulder twisting, neck twisting, and fingers jiggling around.

I lived with TS just fine until about 5 years ago. I have had other back surgeries (not related in any way) and was diagnosed with needing a neck fusion. Likely from decades of head twisting.

I couldn't get the surgery unless my tics were controlled, so I started Xenazine (tetrabenazine). It's a VERY HARD drug to live with, and I take 3 other drugs to control side effects. But my neck issues were solved with my head not twisting and I've chosen, for now, to live with it.

I expect someday to test medical marijuana, but now is not the time.

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Hi Patric65

Although Tourettes Action do not offer benefits advice, we have a help line which you can contact for general information and support; it might be helpful for you to talk through your situation with one of our team. 0300 777 8427 (open Monday-Friday 9am-3pm) For further information about groups and our befriender service, please contact Volunteer manager at Tourettes Action, Emma Myers: [e-mail]

Best wishes

Helen

[Eadweard]

As an adult with TS in the Norwich area I would be very interested in a group too!

[Patric65 in reply to Eadweard]

Hi there

I haven't found a group for TS but there is a place in Norwich which helps with differing mental health problem. Called 'Under one roof' there are various group there; music, meditation, creative writing, art, computers....there is even a small veg plot.

I have used it. The people are very friendly and understanding. Its a charity. It's free! just go, register and just book in /out each time you go.

I hope this help. If you find any groups, also I would be happy to hear from you. Take care.