No Ataxia communities

[123geoff]

I have asked social service radio and no joy  

[123geoff]

I keep writing and no out comes from it. I can not talk with nothing around for great deal of miles away. in situations like this where or who for answers.

If any one with complex issues I will be only to willing to have a communication.

[cymruralf in reply to 123geoff]

Hi Geoff 

Are you ok

[123geoff in reply to cymruralf]

Hello Cymruralf I have someone who is taking the notes to what is communicated. I live in a village in Cheshire area it is very rural I have no communication in area with no  support and if anyone as any ideas I would like to know what information if anyone have a place  near Cheshire that you go as this will be much appreciated.

Do you have any centres where you are Cymruralf I am interested how many centres are going.  

[wobblybee]

Geoff😊

If you need to talk, why don't you contact your nearest Ataxia Support Group🙂 You'll find the list on ataxia.org.uk

If speech is difficult, look on Facebook for Ataxia Support Groups🙂  People are often online all day, even exchanging 'one liners' stops you feeling alone😊xB

[123geoff in reply to wobblybee]

Ataxia have a good communication with apart of the help desk but the rest I keep to myself. When asking about Ataxia places to meet I get no answers Yes you are right online, But meeting people with ataxia is a communication that you have others with the same or mostly in common but express them selves. Also enjoying every ones company. Thank you wobbly bee

[tedjohnson]

Hi. 123geoff

Are you looking for a local group?  Your first bit of help is Ataxia U K who will be able to help. You on all sorts of subjects related to Ataxia.  They have a lot of literature and also a helpline.  Give them a try

Best wishes.   Ted

[123geoff]

Thank you for that Ted but I have been through all channels and I still can not find  a group to go. With calculation London have a good share and that applies to the amount of Ataxia Hospitals. If help can be given I would be very grateful. Thanks Ted 

[4Heavenly]

Hey Geoff not to sound mean but where do you think some will help. That's never going to happen for sure. All I have gotten from doctors is there'snot a thing they candoforme. I know it sounds cruel and it is not something we want to hear. But I've gotten so let down anymore on this I control how I feel. I believe I will see what happens when it is here. Do I sound angry? You bet I am. I've decided I need to out poor anger. The more I do the better off I feel. No one can tell us how to put something. It us that have the feeling to tell. So if talking to someone to get those feelings out. I say go for it. I let it out with a poem and that has helped. Best wishes to you and God will Praise you for coping with what you are dealing with.

[123geoff]

Hi 4Heavenly, Depending on your area and country as these have a big part of help. I was told in 1999 I have ataxia by my Neurology which for 8 years my vision got blurry With been passed to an optician cant find nothing the Neurology said my brain was clear. I found my life was not right so I asked for a second opinion. My GP was most kind he forwards me to a professor who was one of 3 top ataxia professors in the UK. It was then after very in-depth tests and scans on that full day I got a big surprise outcome. Bt this time I was declined earing speech numbness coordination. Has I sat down he was bewildered and could not explain why the scan had not picked up with the comparison x-ray that I had two old mild strokes and the epilepsy grand mal and you are totally blind? My brain and thought could not realise the things he came out with knowing I was proven right. At last, I had proof of the area the ataxia effected. He said to be prepared with your voice as this will go looking at the scan. The hearing is declining also the spine which area it as started to affect the core. I asked in your opinion what will happen how it looks. He said that all preparation will be sorted for you for your needs. Up today I am severely blind deaf-mute part paralysed. I continually see two professors each part of the country. searching for answers with continued tests. The future is live the best of what I have a translate lipreader who types all my replies and editing. It can at times frustrating that no cures have not been found due to low headcount with the condition. My hope is that day I have a chance to be more independent. what will be will be for the future but make the best of what my abilities are allowed me to do and Blessed.