Rapid Decline - anyone experience this?

[Hickox]

I am an 82 year old woman who was diagnosed two years ago with SCA6 which my mother and grandmother also had. For the last two years tho I was dizzy all the time, my speech increasingly slurred, and I had eye problems and issues with balance, I still walked three miles a day, drove (sometimes 1 1/2 hrs at a time) and felt energetic and confident. Recently during one of California's "atmospheric rivers," I slipped on some leaves in our yard. Nothing broke, tho I tore a ligament, but since then I have been MUCH more dizzy, unstable and weak (particularly my legs) and it is a trial to walk even 1/4 a mile. I'm thinking that in the fall, I might have dislodged some ear crystals (tho I didn't hit my head). I wondered if anyone else has experienced a similar rapid decline or has had experience with ear crystals/vertigo.

[PatsyIpswich]

Hey.. I will also be 82 in November but my diagnosis is idiopathic cerebellar ataxia. The progression of my symptoms have been extremely slow and I am now using a wheelchair. I cannot stand unaided for more than a few seconds. I only have dizziness when unsupported and understand from neurophysio that this and tremor is caused by brain signals. I hope this helps. Patsy x

[monstrous in reply to PatsyIpswich]

Hi Patsy I have the same Ataxia as you and was only diagnosed in 2020. I am 79 years old and my balance seems to.be getting worse I do use a walker but he be to have someone with my as I get quite unsteady. Still waiting to see my Neurologist in Colchester. This condition is horrible and I wish more people knew about it.

[Obeyonekonobe in reply to PatsyIpswich]

Hi am 47 and have the same ataxia as you,the bit you said about the tremors being caused by brain signals quite interesting, thankyou 🙂

[pinjem]

Had experience of BPPV which took a long time to resolve. There are manoeuvres that can 'fix' it- dependent on the source the problem. See a Doctor or whoever does this sort of diagnosis or treatment if you think the problem is inner ear. This is something that many people have, it just makes it all more difficult for ataxia sufferers. If you have that, it won't be helping at all, just make moving safely all the more difficult so you get tired more easily. See a professional? Best wishes.

[wobblybee]

🙂The good news is..you enjoyed an active life before being diagnosed with SCA6 at the age of 80.

Diagnosis invariably occurs at least a decade earlier..and symptoms can progress steadily from then on.

It’s good to know you weren’t seriously injured..but obviously any fall is bound to cause shock, and can have a knock-on effect making symptoms harder to cope with.

I don’t have the same diagnosis as you, mine is Idiopathic ..but I do cope with ‘ear crystals and vertigo’.

This type of vertigo is called Benign Paroxysmal Posterior Vertigo (BPPV). For peace of mind as to whether this is causing you problems…you could ask your GP or Neurologist to check this for you. It would be a simple head manoeuvre.

[Hickox in reply to wobblybee]

Thanks Wobbllybee. I always learn from you posts. Warmly Hickox

[Kitdog123]

I occasionally have trouble with vertigo and so does my daughter, I think its just part of the ataxia.