Aids?

[ljp103]

Hi there,

I was diagnosed with sca2 last year (although I had symptoms since 2014). I am 25 and don't know anyone as young as me who has it too. I'm a bit wobbly and have very little balance but don't use any aids to walk with. I'm worried that I will soon need a stick - not cause I feel worse- but from what I've read most people have a stick or rolllator. If this happens I won't be able to work any more so hope it never does. I know everyone is effected differently but I just hope I don't get worse quickly. Does anyone know people my age with ataxia?

Thanks,

Laura.

[wobblybee]

Hi ljp😊

I saw your post yesterday but couldn't decide on the best advice🙄

But, you need to be acknowledged, so....

It seems obvious that your post hasn't yet been read by the younger

community, so why don't you contact ataxia.org.uk and ask for

advice? All members have a profile, which includes their age and

where they live. I can't believe others haven't asked the same question.

Despite the need to protect privacy etc. you should be able to get

constructive advice😊

I've seen posts on livingwithataxia.org from young people wanting

to make contact with 'like mind people'😊 This is something that should

be addressed.

I'm not totally up to speed but I do know at one time there was a

'chat room' which was popular with young people.😊 It was run by

a member of AtaxiaUK.

Fingers crossed for a good response😊xB

[Edward1958]

All ataxia is different, my husbands is idiopathic ataxia ( they have no idea what caused it. But it is progressive, yours hopefully may not progress,

[Ahuntatregency]

Hi, I am quite a bit older but have had ataxia for nearly 40 years due in part to Gentamycin toxicity. About 5 years ago when the streets were icy I saw someone using a Lexi walking pole and got one to try out. It helps enormously, gives me more sensory feedback and just a little support when I need it. It is very light and collapses down if you need to pack it. Wishing you all the best, A

[lynseyh91]

Hiya I have ataxia and i am 25. I am too in the process of getting a walking frame which is a difficult decision but if it helps me to stay walking for longer then it's a good option

[Jonathan_Evans]

Hi Laura, Jonathan from Ataxia UK here...

We’ve recently started work on a project called Ataxia: 16-30.

Like a few people have already said, it’s essentially a group of like-minded, young people living with ataxia, who are looking to chat, meet, engage and generally let off some steam. We have a private Facebook page for the community. This group is private, so anything said can only be seen by other members of the group. We’ve also set up a corresponding Twitter account (@Ataxia16to30) if you are a Twitter user.

We’re also in the process of developing a 16-30 website which will have a range of information, news and events, specific to young people up and down the country who are interested in becoming more engaged with one another as well as being able to take inspiration and advice from other members who have been through the same challenges. We're hoping to have the site live very soon.

In the meantime if you wanted to drop [e-mail] an email, I can add you to the private Facebook group.

I hope that's useful and best wishes,

Jonathan