Apologies Linda🙂My reply was intended for JD🙂
I have Atrophy myself, my ataxia is Recessive. Every day is a challenge re vestibular issues, poor mental focus and lack of energy. Not to mention choking, tongue biting, falls( which take me unawares), being unable to attend social occasions because of crowds and noise etc etc etc. It’s been this way since the early 1990s, gradually worsening as more symptoms crept in. Although, some people are ‘knocked off their feet’ almost overnight…
There are numerous types of ataxia, we know that even in the case of genetic types within the same family, individuals may experience the condition slightly differently. What may be achievable by one person, is impossible for another.
I don’t doubt that some people can ‘hold their symptoms at bay’ by using methods as you describe, it very much depends on the type of ataxia. I only wish mine would respond favourably.
For many of us it’s a case of ‘use it or lose it’… sometimes you have to make a choice how best to expend the energy you have at your disposal.
Encouragement is good, support is good. Advice must be given advisably. xB
Thank you, Beryl. I never intend to give advice, only to share experience and input from neurologists. I can’t “hold my symptoms at bay” either. But definitely, support is essential:)
hello everyone , the topic interested me a lot , it’s very important for me since even though i personally don’t suffer from ataxia , my relative does , and i would love it if they could get better , they too have cerebellar degeneration , not acquired ,i wanted to give some of my own input if you don’t mind(that’s why the paragraphs are so many ) . From what i understand , neuroplasticity is The brain’s ability to reorganize itself by forming new neural connections,it allows the neurons in the brain to compensate for injury and disease and to adjust their activities in response to new situations or to changes in their environment.(that’s an internet definition ) ,so it might not be the case of bringing back dead cells as much as it is maybe making new ones, or perhaps the most important ,make new connections .
from that last one , i think the brain can change its own structure to have for example : a cognitive part of the brain also do a motor part , so now , both can be done .
But that’s just it , in case of injury , i’d say this works 100%, but in this case , that of cerebellar degeneration,i have no idea , i’d like some input from those who have tried to do intensive exercise for years , what was your experience like , and did you benefit ?
Also ,i’d like to add that there have been research done specifically to search this topic , and what they got was that after a few weeks of intensive exercises ,the patients did better than before, but after a while , they got to their initial state again here’s an article :Motor Training in SCA yields temporary improvments.pdf (2.7 MB)
So there is scientific proof that specific exercise does improve balance by a good amount even if it is for a short while,my question is why ?I know they didn’t stay that way , but i’m not asking why they got worse, i’m asking why they got better in the first place , maybe there is something that changed in their brain ,maybe an extra connection was made , but the degeneration overwhelmed it , maybe new cells did grow on the cerebellum but then died because of the degeneration .
even if it’s temporary , I’m encouraged to tell my relative to do intensive therapy , we won’t lose anything if we tried , and if we get something for the long term , that would be great , maybe they would have to do intenive therapy for the rest of their life , but that’s a good price to pay for better symptoms , sorry for the long post .hope everyone is fine .
Cerebellar Ataxia, is a progressive, degenerative Neurological condition. Symptoms can slowly manifest or appear virtually overnight. Hardly any two people experience exactly the same symptoms to the same degree. Like many other Neurological conditions it can benefit from mental and physical exercise but most Ataxias can worsen with stress and fatigue, it very much depends on the individual concerned.
There isn’t a ‘one regime benefits all’. Forcefully encouraging someone to constantly push themselves can result in stress when progress is slow, because of the naturally degenerative nature of the condition.
However, since we are all different, some of us find we can still take lengthy walks in our stride🙂 Still have success with complex mental puzzles🙂 Still remember why we came into a room😉xB
One thing that concerns me quite a bit is the “blame the victim” that I often hear about disabilities. With that perspective,the reason we have problems is that we don’t try hard enough or we don’t have a good enough attitude. That probably makes people without disabilities feel better(because after all, they would try hard and have a good attitude and therefore have no limitations). As we all know, though, the brain does whatever it does, and that determines the outcome. Neuromodulation may help some of us have fewer limitations, but it is not sufficient for us all.
hi Beryl-Park , hello Linda4,yes , forcefully telling a person to push themselves and blaming them is not the idea , however , my relative is known to be a couch potato even before the disease , so some pep talk about how important exercise is ,is definitely a must , but in moderation and with kindness ofcourse , we want them to be happy after all , not stressed , take heart ,i hope you are all well .
I’ve also wondered about neuroplasticity. For a while, I kept thinking that surely it would work. However, the genetic counselor explained to me why it doesn’t. At least for SCA2. SCA2 is a trinucleotide repeat disorder (that’s the CAG repeats part). There are youtube videos on that (e.g., https://www.youtube.com/watch?v=jH_LfHHpW2Q). The repeat occurs in ALL the cells in the body (not just in the cerebellum or brain stem). Each cell has one good/normal copy of an allele and one expanded copy (I can’t remember where, but maybe in the cytoplasm). The reason that SCA2 onset is usually in adulthood is because the normal allele compensates for the expanded allele, but as we age it loses that ability to compensate (and scientists don’t know why).
So in the Motor Training article, my theory (my theory/OPINION - zero research) is that new cells were generated in which the normal length allele could compensate, but that compensation only lasted for a short while before the effects of the expanded allele kicked in. Hence a temporary improvement. I hope this makes sense.
And yes, exercise is good. Even if it’s just for the endorphins that keep us happy.
I think Beryl_Park hit the nail on the head (not a good pun sorry) we are all so very different in not only our diagnosis but our progression. There is no doubt that neuroplasticity in some cases works, however, it all hinges on the structure of the brain and whether it can accommodate such retraining.
It also depends a lot on the individual, if they have the mindset to endure such a regime of training. There are so many symptoms of neurodegenerative diseases in general such as: incontinence (bowel and urinary) choking, balance, stiffness, fatigue, eyesight, and the list goes on, we must often deal with them all. When it comes to neuroplasticity and dealing with such symptoms, where do we begin? How should each symptom be approached?
Yesterday I took a small road trip, and lost control of my bowels, we had to turn around and come home. Can the brain be retrained to control incontinence? I don’t know. Where would one begin for this?
My point is balance and coordination are often just one of the symptoms many of us deal with. I might not make it to see the day when all of my symptoms get better or go away with neuroplasticity. But if I could make one small improvement through retraining, I would.
Dave - MSA
Hi there. I have no idea how to use this newfangled site so bear w me. This topic is one which I think about a lot…
PTS tend to believe in the truth of neuroplasticity and MDS, less. This has been my experience. I have, its thought, CA, induced by autoimmunity; I have weird antibodies in my blood. The latest is CV2. On top of this, I seem to have developed some MSA type of condition. This may or may not be true; no one seems to know for sure.
Its amazing to me how many views there are on this. Everyone seems to believe in some degree of exercise, My neurologist said walk in any way for half an hour a day. Inside or outside. and my PT says only do it outside and get together w your friends!! Does he not realize that this is stressful to me because my speech is labored; my walking is with a walker and even that is becoming unstable and my eyesight is blurred, Yes, I choke and cough from time to time. I want to believe in change but I am not sure that I have the discipline to practice 5 hours a day. What is the pons machine?? Feel good everyone. N
Neta, walking has the same benefits if it is inside or outside. I suspect your PT was trying to make it more fun for you, but you can walk anywhere.
I am optimistic that using the PoNS device may help and I am looking forward to it being approved by the FDA, which is supposed to happen over the next year. I want to get it prescribed for me even though it is being tested for TBIs. It should not cause any negative side effects, and I sure hope neuromodulation works! I have been doing lots of exercises for the last seven years and made little progress, so I have accepted that I cannot do it on my own.
Thank you Dave, the bowel Problem in MSA is definitely something different , and i dont if all if any of the symptoms can be treated with neuroplasticity , but as Bookworm wrote , the exercise will ,if not physically ,at least mentally it might , but even ifwe get temporary relief , we’ll go for it , thank you for that bookworm , that’s pretty interesting on what your genetic counselor said .
I can only speak from my own experience.
I have exercised and played sports all of my life however with the onset of ataxia at age 71. I am now limited to playing golf, walking the course, walking during off season and lifting weights using machines as I am too unstable to use free weights.
I have found that regular walking with my rollator will mitigate my balance problems but only on a temporary basis. The effect however can last for weeks or months providing I keep using it.
I progressed to the point where I went back to using a cane however, over time, I regressed and had to use the rollator again whereupon my balance got better. I now use the rollator regularly on walks whether I fell the need of it or not.
On the golf course I use a standard 3 wheel golf caddy which has much the same effect as a rollator. I notice my balance improves over the 18 holes played (I seems to be worse at the start) however the effect is temporary.
Exercise does provide benefit if only to make one stronger which helps to avoid falls. I believe that anyone with ataxia who can exercise within their limits of ability is wise to do so.
I was in a clinical trial some years ago. They put an “EEG hat” thing on me and instructed me to think “up” or “down”. The hat translated my thoughts about movement to a primitive video game on a screen. When I thought “up” the cursor did in fact go up and when I thought “down” the cursor did go down. All I had to do was clearly picture the movement in my mind. This was absolutely real and in some ways scared the sh*t out of me.
I read the scientific paper about the trial year later. They said that ataxic people were using different parts of their minds to imagine and initiate movement than non-ataxic people. Which means we were rerouting things in our brains to areas that were not damaged. Neuroplasticity. I am still able to “pass” as normal on most days, and yet my brain was already doing this.
Moral of this story is don’t ever stop trying to move and trying to make those movements normal. When you stop trying you will stop being able to do it MUCH faster than if you fought it. Don’t believe people when they say you can’t improve your function. You can’t get rid of ataxia, but you can definitely improve things. Maybe just a little, or maybe a lot.
That is good to know. Thanks for sharing. I still find it quite discouraging that after seven years of regular exercise absolutely nothing has improved. I will keep doing it because I do not want to lose ground or gain weight, but it is discouraging. I should add that my ataxia is not degenerative, so fortunately I am not dealing with that.
I think that for women, age is supposed to affect weight, though that is not the case for men. I have a hard time telling with me because I spent much of my life overweight. Fortunately, I lost the extra weight before developing ataxia, since I would likely have a harder time now.
@Bookworm, an interesting idea. I have two alleles (SCA8) though so you’d think I would have had symptoms quite young, if your hypothesis were true. I started having noticeable symptoms in my early 40s. You might be on to something though, I just can’t explain it scientifically.
All my life I was a skinny tall man. I led an active lifestyle, skiing cycling etc. Since I became ill, I do what I can to stay active and fit but it’s hard do to mobility issues. I went from 165lbs. (75kg) to 235lbs. (106kg) Now I feel sluggish and weak most days, I get out of breath easily. My family dr. says I need to lose some weight. There is something to be said for being active and fit.
The take home message I suppose is no matter if you are heavier or skinny, try to stay active, get some exercise, eat properly, and try to be positive.
I think being as healthy as possible nurtures positive brain function, which in turn may make it easier for the brain to accommodate Neuropllasticiy.
Ah, you miss the skiing then Hutch. And so do I, so do I. Not a typing error here. Just thinking out loud and repeating. Loved it even MORE than swimming in the sea and THAT says it all, just loved to tackle the waves. But, those mountain slopes, where there’s not a thing on your mind right, except getting down in one piece:) Nothing can compare can it. Hold on to those memories Hutch! Lots and lots who never had this experience, it’s breathtaking isn’t it.
And…about your weight you’re not too thrilled about, well we have a saying here in Holland: ‘ieder pondje gaat door het mondje’. Translate and it sounds bleeding awful in English. But it’s not the meals I assure you, it’s in the extras that find their way down. And with a sitting-down-life we have all the time for the extras haven’t we:) Take care Hutch, do what the doc says, be a good boy, make yourself proud:)
Hugs from Holland, Elle.
Speaking on behalf of those of us who have 'diplomas in being a couch potato’
I never was athletic, I skulked at the back when teams were chosen at school, I can’t swim and the most running I ever did was for a bus😉
But, I have kept as active as possible without resorting to sports I have a large garden that looks its best when well maintained. It’s been brilliant exercise xB