Coping with a diagnosis of Ataxia

[2rayvon4]

I have recently been diagnosed with Trunkal Ataxia - late onset, I imagine, as I am in my mid 60's. I'm wondering if there is anyone in the Hull area specifically, or elsewhere, who is living with a similar problem, and could let me know how they coped with their diagnosis.

[brighouse]

Sorry you have joined the ATAXIA 'crowd'!. I am 89 and was diagnosed with the dreaded problem about a year ago. I am treating myself, as there seems to be no treatment. what I do is not the answer, but I feel it helps me. I bought a small 'treadle 'bicycle' which I sit on a straight-backed chair, put my feet into the straps on the peddles and pedal about fifty times....I also use a circulation booster...this is quite expensive, but it does help the circulation which you feel in your legs and feet; I do this half an hour each evening. Other than that, I am helped going for a walk using a 3-wheel 'walker'....good luck!

[2rayvon4 in reply to brighouse]

Thanks for your reply. I must follow your example and start to use my 'bicycle' ( a similar one to yours, I think) more regularly. At least it's a bit of cardiovascular exercise! I can walk with a stick, but not fast enough! If you can be so positive at 89, I'm sure I can be! Wishing you well. Ann

[babygirl123]

HI 2rayvon4,

I have ataxia and live in Hull. Mine is cerebellar ataxia, I have been diagnosed a year now.

I haven't heard of any one with truncal ataxia.

So I don't know what problems this ataxia has for you. I'm sure some one will be able to help.

take care

Marion

[2rayvon4 in reply to babygirl123]

Thank you for your reply. The neurologist, Dr Ming, has said I display features of mid-lying cerebellar dysfunction. I have to use a stick when walking as my balance is poor and at times I wobble significantly. The severity does tend to vary throughout the day. I'm fine when seated. Occasionally my speech is slightly slurred. When I asked, Dr Ming said the condition was degenerative, and I should perhaps consider more robust balance aids - that was it! I am, however, struggling to come to terms with the diagnosis and how I might cope in the future.

Sorry to sound so negative.

Best Wishes, Ann

[wobblybee]

Hi Ann

It's a real help if you can get to an Ataxia Support Group. Talking face to face

with others coping with similar problems can be a revelation You may

meet someone who lives near you

I know that even though there are lots of groups, sometimes it's still difficult

for some people to travel any distance. If that was the case, you could start

a group yourself, contact Tina at AtaxiaUK.

In any case, if you look on AtaxiaUK you'll find a list of support groups, I hope

this is helpful xB

[jurgen]

" The neurologist, Dr Ming, has said I display features of mid-lying cerebellar dysfunction

Dr Ming said the condition was degenerative"

******

the bad news: there is NO therapy---other than exercise

the good news : with constant exercise & a rollator you might be all right

-----at least for a while

Regards

Jurgen

[2rayvon4 in reply to jurgen]

Having read your post, I don't know whether to be optimistic or pessimistic! Which are you?

Best Wishes, Ann

[babygirl123]

Hi Ann

I think your ataxia is almost the same as mine. There are loads of different names for these ataxias with the same symptoms and the same outlook for the future. I struggle with the thought of not knowing when things will get worse. It is hard to take in. People one here are a big help and talk about anything not just Ataxia.

I got in touch with the North Yorkshire support group, Tel: [phone] Karen and Gavin Dalton run the group in York. Why don't you give them a ring. Or email at [e-mail]

I went to my first meeting in July, it was good to meet other people who are going through the same thing. Your not on your own there is support out there either from the support group or Ataxia UK. and on here, there is always someone who can give advise or just chat. Im really glad that I

joint this site.

Marion x

[2rayvon4 in reply to babygirl123]

Hi, Marion

Good to hear from you. Thanks. How have you been today?

I have tried contacting the Support Group in York, but with no success so far. My feelings for the future are very similar to yours. You have a diagnosis and then..........what next? I'm glad I've joined Ataxia UK, and having this site is useful too. I don't feel QUITE so isolated. Do you find your symptoms vary throughout the day? I can see no rhyme nor reason to them, but know they're constantly on my mind - and depressing. Fortunately my driving's not affected, which is a bonus.

Ann x

[babygirl123]

Hi Ann

Hope your ok. Im ok so far this morning.

I will mention to them at York on Sunday when I go, that I gave you their number. If you want to send me

a private message to my inbox on here with your name and number I can pass it on for you.

I will send you a message in your messages.

Marion x

[Vvalerie]

Frightened