New research feb 2021

This is an article about my doctors (dr Scott Barbuto and dr Kuo) at ny Presbyterian basically touting the research that sweaty aerobic exercise increases the volume of cerebellum as opposed to gentle balance training as previously thought.

Continuing the discussion from Cerebellar ataixa:

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:slightly_smiling_face: This is interesting…As it happens my very first memory of having a problem with balance was during an exercise class, I also used to enjoy playing badminton and had problems with that activity too.
Most of us have probably been advised to exercise within capability, to basically just keep moving, this is the first time I’ve read anything advising aerobic exercise. But that’s not to say some people may find benefit, if they can build up tolerance.
My own problems are Vestibular, there’s thought that I may have an Episodic Ataxia and that particular type can be actually triggered by over exertion.


Only problem with that is most of ataxic people cannot do sweaty exercises.


very interesting as having to be careful not to fall, excludes most sweaty exercise and maybe why I have deteriorated. Doing things slowlyand carefully is much more difficult but maybe the cerebellum thinks it can take a break :roll_eyes:
When I used to go to the gym, I could use treadmill with side handles and at one time had stationary bike but I havent got the strength or energy now.

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Thanks for posting this.
Most aerobic exercise requires a degree of balance, we are all different, and I can only relate my own experience. My Ataxia was diagnosed at age 70 although there were slight indications all of my life that balance and agility were not my strong points. Still, I was able to play competitive sports and excelled at some of them.

Within a year of diagnosis I was on a rollator and immediately tried to run behind it. I got about 50 yards before I nearly vaulted over the unit and realized that there was a reason that they are commonly referred to as walkers.

Since then I have been walking several days per week on indoor and outdoor trails and also using a rowing machine, a treadmill, and an elliptical machine. It took a while for me to be able to develop sufficient balance to get my heart into an appropriate training range. I know generally just walk as I find it less boring.

Seven years on my Ataxia continues to progress however very slowly I think to the surprise of my neurologist. In any case aerobic exercise is likely beneficial for those able to do it.


I completely agree about aerobic (cardio) exercise.

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How did you keep the walking going with this prolonged winters of USA North East?

My gym is less than 10 minutes from my home. Getting around wasn’t too bad. I can still drive but I do have to pay attention. In the gym I do 1/2 hour on the recumbent bike plus I also do some strength exercises. It’s not easy but I still do them. I’ve always been an athletic person so my mind is geared that way. :+1:I’ll never give up!

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Good to know and also I’ve to stop whining. I find that when I stop practicing walking ( which I can only do in summer and fall) my gait deteriorates.

I am so sorry to hear of your deterioration when you can’t really walk. If you have indoor stairs available to you, walk up and down them a few times - SAFELY THOUGH! Another exercise. Stand behind a chair and while holding on for balance, do kneebends and in turn as another exercise alternate lifting each leg as high as you can.

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Ah so, it is my particular problem. I think it is a lot about confidence for me and regular practice gives me confidence.
As such exercise is not a big deal for me.

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Don’t go there and place any blame anywhere. Blame is a wasted emotion. Just do what you think you should.

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Hello, I am French and diagnosed in 2008 with spinocerebellar ataxia of machado joseph. please excuse me but I use a plotter because my English is very poor. here the only advice that the doctors give us is indeed daily exercise and once a year a 1 month reeducation in the center. kine at least 2 times / week but in any case it increases the volume of the cerebellum it just slows down the progression of the degeneration of the cerebellum in short it slows down the progression of the disease but without curing it.



Machado Joseph is SCA 3, right? I wanted to thank you for taking the trouble in writing in non-native tongue bolstering the finding/ hypothesis/ experience about aerobic exercise. Appreciate it!

with pleasure, but I do not have too much merit the translation is doing its job … that’s right, it’s an SC3. and despite my daily activity, the disease progresses anyway, may be less quickly because it has been 13 years since I was diagnosed and 15 years since I staggered but still no wheelchair. I either walk or cycle (I own a tricycle) every day, physiotherapy 2x / week, handisport sessions 3x / week, + 1 / year I do 4 weeks of reeducation in the center in short I myself active but I still fall once / day so I do not know if my efforts pay off but my father who has the same disease and it’s been a lot less lontemps than me, he is in the process of making his will … Execution, but not only morale, is a great strength to be cultivated. good to you

Could you please elaborate on what they teach you at the re-education Centre.

As for me I’ve SCA 2 from my father too; I stumbled roughly 10 years back and immediately self diagnosed me ( as I was born in this family). Only last year I was formally diagnosed with SCA2 from the drug trial. I’ve been active 20 some years, but as you mentioned, this ataxia creeps up, maybe slowly.
Currently I work 2 days with a physical trainer by online sessions and at least 3/4 days more by myself. I am trained in Muay Thai and own a heavy bag where I practice boxing (I love it).
I am on a drug trial, triroluzole- the first year is a double blind study, so maybe I’m on placebo. The second year is open study and I’ll get the drug. The drug is not a cure but slows down degeneration.
I’m walking though my gait is not normal. I don’t fall down yet. I need to hold rails going up and down the stairs.

Not to rain on your parade, I had been on BHV-4157 for 2 years. I had no success. I have SCA-6

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No, not at all! As far as I understand this drug is no cure, but only might slow down the degeneration!