What is it like to have SCA3?

[Bikebug]

I have finally found the correct description for what it is like for me with SCA3.

Can you imagine walking in a stream that has river pebbles so that your footing is unstable and can give in at any time.

If you cannot see where you are stepping you can stumble and fall, so using a walking stick is a great asset. Walking in low light at night is difficult so a torch helps, so you can see your steps.

Eventually, it gets overwhelming, and your mind needs to take a break from the extreme concentration to keep your balance and keep moving. after a break you can then refocus and continue.

This is my eperience, others may differ but I wanted to share to help others explain to others who do not have SCA3 as to what is the challenge.

After most days outing my feet ache from the neurology and it feels like they are on ice or tingling on fire. Compression socks help and ointment called "Pain Away"., available in Australia.

[penelope2]

Hi bike bug. I have not got a genetic ataxia so maybe different symptoms. But I would not be able to walk at all unless the surface is smooth so forget pebbles and as for using a stick to keep me upright, my coordination is bad so it means that using a stick does not help me at all.Maybe for me the cerebellum is effected more, we are all just so very different.

Yes my feet and legs are aching too after doing too much, with me it's the peripheral neuropathy and nerve damage. I do exercises to keep my legs strong to try and offset this. Hey ho we have a lot to put up with. To be honest I rarely explain to people what it is like to have ataxia, I think they can see and hear when my voice is effected.

Take care.

[Bikebug in reply to penelope2]

Hey Penelope,

We all seem to have different journey with ataxia. I am investigating using EMDR which helps reprogram the way we interpret what is happening. Look up YOUTUBE for EMDR bilateral sound music I have found that it can help get through that transition period to sleep. Neuropathic pain in feet is so annoying.

[PatsyIpswich]

Yes very descriptive.. especially pebbles. Thank you. X

[Libra7]

Hi Bikebug- I ike your description of trying to walk with Ataxia but my walker ‘doesn’t do’ pebbles and I am past walking with a stick!

We were recently invited to lunch at a pub in Avebury which advertised it had ‘Disable Facilities’ but when we looked at it on Street View we realised that to get into the pub you had to walk over a cobbled courtyard. As with pebbles my walker doesn’t do cobbles either so we have had to arrange to access the restaurant through the fire door.

I always describe walking with Ataxia is like walking over a ravine on a swinging rope bridge!

[wobblybee]

😂 I really shouldn’t laugh..but it was your description.

I feel wonderful sitting..but once on my feet it’s like being in a parallel universe.