energy varies greatly from day to day

[Hickox]

I was diagnosed with Spinal Cerebellar Ataxia type 6 about a year ago. Among other things, my energy varies greatly. Yesterday I felt almost normal - speech balance but particularly energy - I felt like my old self. Today I'm very weak. I didn't do anything different or taxing. I didn't eat differently than I do every day. Do others experience these dramatic shifts? What explains this?

[wobblybee]

It’s disconcerting to say the least..My speech is near normal generally but can unaccountably take a downturn..On Thursday I spent some time walking on a gravel path, obviously it wasn’t something I’d choose but I’d been invited on an outing. My balance was awful, I veered around on my walking stick and it was exhausting.

On Friday I went to an indoor shopping centre, where the floor was completely smooth. I attempted walking without my walking stick, and managed several yards.

Today I tottered along a Promenade..back to square 1 🙄

[Hickox in reply to wobblybee]

Thanks for your response - it helps to have others experience the same.

[gossy]

my energy can go from normal to exhaustion for no reason but especially if I have had a few busy days I really suffer and can sleep on and off for a few days same with my speach its taking a down wide slide and I find the weather effects me as well especially cold damp weather just learn to rest more than you used to and try to keep your mind busy if your body is working itself and if you are up to it try gentle excercise a few times a week

[Butcherpete]

I was diagnosed with SCA6, back in 2014. I was OK for a few years, then in2018 I had a fairly rapid downturn, now I find my speech is bad, meaning I know and think what to say, but cannot express it verbally most of the time, and considering I was a market trader in the last few year, go figure (and I can pinpoint when it happened to the hour, a 2nd TIA). As far as walking goes, I struggle with a stick, get tired legs within a few yards, even standing up at the kitchen sink, tires me out. I retired at 58 (4 years ago)

[RNVET]

I have not been given a specific diagnosis like most of you. My MRI as of 2021 shows ventricular enlargement which has not changed in 7 years—-last one was in 2014. My current neurologist measured both images. The doctors say I have lost cerebral neurons and fluid has filled the space. I am a patient of the veterans administration and the first neurologist said my ataxia is due to Army alcohol consumption. The second one says it may be exposure to Agent Orange when I was in Vietnam.

I do have good days and bad days. I have observed I function much better in the morning and then my energy and balance decline as the day goes on.

[RNVET]

PS my speech and intellect are so far unaffected.

[Pam_ann]

I experience the same symptoms as wobblybee. Never too sure how I will be as bakance can quickly change to more or less normal to having no control at all. Same with speech on minute articulate next brain fog and incoherent. When reading what I've written find letters often jumbled making no sence. New to this site and find it very comforting to be able to communicate with people who understand the consequences of living with ataxia