Explaining ataxia

[SMarley]

Hello everyone,

I'm trying to put together some useful materials for newly diagnosed individuals with ataxia. We understand that it can be difficult to find ways to explain ataxia when you're first diagnosed to friends and family.

Can I ask how you've explained your condition to your friends, family and/ or members of the public in the past?

Many thanks,

Steph

[Litty]

People cope if you keep it simple I have found. I normally just say I can look and sound drunk but I am not (more’s the pity). If I think they want more I say I have a rare neurological disease similar to MS (they know what this is). Children are much more accepting if you are a bit different.

Hope this helps x

[Ginger1]

Hi, just as Litty says i say it's similar to MS or Parkinson's as people are aware more about these conditions so i find it's a bit easier.

Ataxia UK may be able to give some advice too?

People don't understand. We definitely need to raise awareness. 🤗

[wildstyler]

Another ( simplified ) name for Ataxia is " Drunken Sailor Syndrome ", hope that helps.

[SMarley]

Thank you everyone, your replies are very helpful!

All the best,

Steph

[woody1404]

Easiest of all is to show the card from Ataxia UK which says

'NO am NOT drunk. I have a medical condition: Ataxia.

If they want more I usually then have to apologise for being a bit evangelical and explain some of (my own) symptoms - poor balance, dodgy co-ordination, slurring words, hand tremors & poor fine motor skills

Depending on their reaction I may then talk about its rarity.

Enough already! Derek.

[SMarley in reply to woody1404]

Hi Derek,

Thank you very much for your reply; this really helps!

All the best,

Steph