Does anyone believe that with hard work and defiance ataxia could be overcome at least somewhat??? N
Hard work a solution for ataxia??: Does anyone... - Ataxia UK
Hard work a solution for ataxia??
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neta
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Yes … we have to remain positive.
i didn't think i could do anything. even though i still spend most of the day in bed, every day for about 15-20 minutes i do either upper, torso, or lower body exercises. the first time i did leg exercises i cried. it was pathetic! 
but one month in, i can do more and my walking is a bit better. i may still lack coordination, but the muscles are stronger and it's not so exhausting to move.
i don't know that we can overcome it exactly, but it feels good doing something to fight back!
try your best,you can do it
Yes focussed attention whether it be exercise diet proactive living work or whatever fights the balance/ coordination vagueness of Ataxia. Dunno if it always wins but seems the way to go. It’s better than passively expecting medical miracles. Go for it!
I can only do so much in a day or I just have to stop, close my eyes and 'recalibrate' there is an end cost too as if I do too much, I cannot sleep, which makes me worse. BUT, I try to go for a walk each day in very quiet surroundings and I feel it improves me a tiny bit for the next day. I stay the same or get worse if I cannot walk. My neurologist says I am rehabilitating the brain, and I agree. Not back to 2 short walks a day yet but that is my plan. It gives you small challenges too.
Yes. And no.
I work part time now the fatigue just wouldn't allow FT. 28hrs a week feels like it's too much still but somehow I manage. I always push myself probably to hard and as a result break myself for days or weeks. I won't let Ataxia win as I'm to stubborn. Ataxia is a sh*t and dosent deserve the better of me.
I used to think so. I’d work so hard and refuse to listen to my body. Unfortunately I found out that my body only shuts down when I do too much. Leaving me feeling very worthless. I had to learn to listen to my body. I didn’t like it but it was the only way to progress. I still work with my PT and we try to find new ways to go a little further but Sometimes it just doesn’t work and you Just have to accept that as part of the condition. It is progressive. I am convinced that doing nothing would make me worse so I keep trying the best I can. My motto is: You haven’t failed untill you quit trying.
What about $$$ to live? I need work for that and also holidays for wellbeing.
I've also tried to work on at a much slower pace than i used to bu I found i get a low immune system and get very ill. I still do a day a week voluntary, which i come home from dead on my feet!or not on my feet but mobility scooter!
Hi neta..I believe in some sort of exercise (I still work full time in a warehouse) I also have 2 brothers with the same (ataxia)who do very little we are different in the ways we aproach this and have different stages it's said to be inevitable but I find it at least slows it down some...
I spend many of my days lying in bed, but do get up once in a while to walk and for exercise. I'm wobbly, but do not much pain.
Yes yes yes! Go to ‘walking with ataxia website by Thomas Clouse ‘ he was so embarrassed about his walking and falling that he used to go for walks at night so no one would see him. He just built it up gradually then started to cycle in an adapted bike. Then has private dancing lessons. Now he teaches rebalancing for ataxia people all over the world. He seems really nice and will take the time to answer any questions you have. Also you can do a lot with diet ( avoiding gluten etc) and daily meditation/relaxation helps to let go of the tension in the body
just stay as fit as possible and keep moving and most importantly keep your brain active..
THANKS TO ALL FOR REACTING. YOU COLLECTIVELY ANSWERED MY ????SIMPLY PUT, THE ANSWER IS EXERCISE IS NOT A CURE BUT IT HELPS. I KNOW DR. CLOUSE AND THINK HE IS AMAZING BUT HE'S NOT THE AVERAGE ATAXIAN. I WROTE THIS POST IN PART BECAUSE BOTH HE AND MY PT BELIEVE THAT I CAN WALK UNAIDED AGAIN--SOMETHING MY DRS SAY IS NOT HAPPENING.DO YOU KNOW THAT CLOUSE INITIALLY WALKED 2 MILES PER DAY AND NOW HAS IT UP TO 8-10 MILES PER DAY!! I CAN BARELY MAKE IT UP MY BLOCK......XOXO, ˜N
I suppose the baseline is that exercise helps anyone, so it should help ataxians if they can stand it? Agree, Dr Clouse is not the average ataxian. I read some and used the 'gaze fixing', yes, it helps but I do not live where I do not have to be aware of the rough surface I am going over. This works on the beach, at low tide, but unless there is something to grab at when I stop would not be possible I tried yesterday but how often can I get there? I am better at speed, safer. He doesn't seem to have difficulty seeing and understanding distance etc. I cannot evenvisually understand a kerb. I'm going to read more of his.
i have been diagnosed with CA for 6 years and have recently started rock climbing, the difference in every pat of the CA is very good,it is not a cure but works wonders. I would recommend climbing as i don't have to use my legs so much.
Maybe what i'm doing if keeping me mentally strong as well as physically fit. Any full body exercise would be great for any ataxia sufferer.
Wow! Rock climbing!! I am jealous!
I have enjoyed reading these replies to your question Neta and have learned a couple of useful things. It is clear that everyone's ataxia is different so 'one size will not fit all' I have distorted vision and I have mentioned this before, I have a heavy duty Trionic Veloped, expensive but the freedom it gives me is wonderful. I'd be under a car or into the brambles in no time otherwise. The difference is, I can stride out with it and when the lurch happens (every 3rd to 5 steps) I have a sturdy upright that guides me. I also have weights... but use my ability and time instead to chop veg or go outside. Maybe we might have a physical challenge so we can set ourselves reasonable targets and report back. It is very, very lonely having ataxia in the middle of nowhere. Perhaps a thread on this page? No, I cannot do, I am online doing volunteer stuff and am on limit of brain ability, can't hold any more info. Having said that, I have set myself a challenge that I was doing, before medication (disastrous and set me right back), I was improving, I'm hoping, but not expecting that similar exercise may help again. Any suggestions about how to do/organise?
Thanks for your comments. What is a Trionic Velopad?Why do you feel so alone? BTW, I also have visual disturbance. XO N
A Trionic Veloped is a rollator, but built for people who walk outside, or play golf, I'll put a link if allowed in here, it suits me. I live in a very rural area, I cannot drive, no buses and I couldn't get safely on one anyway, just spouse and myself, family live away. I exist on line. I am actually fairly content but very alone, sometimes I'd like to be amongst people, it is just not possible. I cannot cope with people moving or anyone for any length of time. One of those things I have to accept. If we can move, it will be improved, the location here is so quiet, which is also lovely- all sorts of wildlife to see but no interaction or chats. This is the link, it is very pricy but worth it, we went for a walk today which I could not have done without it, we have a strap (like a dog lead) attached to the front to help me up steep or very rough bits. completecareshop.co.uk/mobi...
Thanx for the link.. T he rollator looks amazing Which model did you get? My late husband and ( had a house in a small country town.We fell in love with the rural life. After mt ataxia got bad,I thought of moving there .,Actually I like to be alone.
Conversing is exhausting I can barely walk....the usual..xoxo N
I bought the sport version, thoroughly recommend it, the price alarmed me but it is worth it for the freedom (walking up and down our usually very quiet lane or being taken to quiet rural areas for walks) it gives me, therefore I feel a bit better and I get exercise too. I cannot converse for any length of time but like company that is familiar and outward looking. I have to 'recover' after a while, leaving the area or just switching off. I quite like being alone too, but not all the time. The internet is a blessing for me.
Dear Neta, Yes, in my very humble opinion I believe with hard work, one can significantly help overcome ataxia, at least for me! I've had ataxia over 20 years and go to physical therapy two times per week (about 15 visits yearly, as I continue to do exercises at home), which has really helped me. My ataxia is due to adult-onset Niemann Pick C1 (NPC) disease, which I just found out about in 2017 (through genetic exome testing). My ataxia has progressed over the years and will continue to do so. My hope is that with exercise and stretching I will slow this train down...,ha! Healthy eating is so important too! It takes a lot of energy but I'm with the belief that 'if you don't use it, you lose it'! My best to you...,;o)
Hi Neta, I have acquired ataxia (I suspect through anti psychotic/epileptic drugs I was given during a series of seizures I had in December 2013) and have problems with balance, proprioception, eyesight and coordination.
I recently was made redundant from my mostly full time job. The difference regarding my ataxia now is remarkable. The fatigue has greatly diminished, I walk better and have been able to resume my regular road cycling with the necessary vigour.
I made the decision when I got out of hospital to walk every day for at least two miles, preferably in difficult conditions such as near darkness, to rebuild or re-wire the synapses in my brain. I'm not entirely sure this approach has worked but at the very least I've been able to re-affirm my ability rather than succombe to my disability. I rarely fall but am certain I would have deteriorated without keeping active. Now just need to work on getting my hands to do their thing!
Upon a second reading, I am wondering whether u think the 2 mile walk helped diminish the ataxia or were u told that it was the sort of ataxia that could vanish??? XXN
Hi Neta, I was told it is likely that I'll never achieve my previous function, Which is like a red rad to a bull for me. I did a bit of research and found that some people are able, through repeated exercise, to rewire the brain. I certainly believe inactivity leads to atrophy but I guess I am lucky to not be too badly affected at the moments. Of course, any activity has to be tempered by the likely after effects of fatigue and in my case increased imbalance and coordination.
I like your attitude! I AM defiant ... and also stubborn myself. This ataxia thing is such a drag, especially when I am used to having bundles of energy and co-ordination. I will try anything that has a scintilla of science backing it up. Right now I'm practicing an anti-inflammatory (no dairy even!) and gluten - free diet. So, after 2 months - no change. But I will be patient. It may take a year, maybe more. Eyes on the prize.
My eye is on the prize. I am coming to the conclusion that aggressive exercise can help abate ataxia. This is my current thought. Thanx 4 you comments . XXX N
Me too, no gluten, even oats and even maize (corn) has really helped enormously, I am a different person from a year ago, but still very affected. I noticed a while back that my hands were aching a bit (as they did with gluten for years) and have stopped any non fat dairy. Yes, my hands seem to have stopped aching. I also had a very bad reaction when I ate beef and then a few weeks later, lamb, both brought all my symptoms back in a very obvious way. Unlike an accidental ingestion of gluten, the effect of which goes in about 3 days, this lasted for nearly a fortnight. Whatever the Ataxia is caused by, these things have to be avoided by me. Everyone here seems different, this helps for me, good luck with your efforts.
I, too, have given up all corn, soy, and eggs. I still eat meat, but especially I love fish. Look for oats that are processed in a gluten-free plant. Then they are OK.
Wow! I usually obviously suffered if anything I ate was a problem.So don't feel I have to do more, yet.. I did try gluten free oats but had a marked deterioration, at that stage it is possible it was something else but I dare not try again yet. I am walking as much as I can, bearing in mind I struggle to do anything much but took advice and fixed my gaze in the distance, and ran for a few metres yesterday. This is not repeatable unless on a wide flat sandy beach! Fixing ones gaze around here on my daily walk results falling into a pothole etc. Good luck with the exclusions, I'd be interested to hear if it helps. (Really, anything that makes it a bit better is worth it!)
Really? Is change of food such a big deal? Do neurologists believe it? Mine said, "Eat anything tasty."
For me, yes, very much so. But this is only me, and I believe it is for others too but just not applicable to a lot of people. There is research on it done particularly at Sheffield. I am now going to try to be referred there rather than have massive doses of steroids tried. For some people this works, do not be put of by my experience, last lot completely and dramatically undid all the progress, maybe it was the drug, maybe the corn in the tablets? It is not an exact problem, so many variables. I am told I am not typical of any known ataxia so this should be taken into account, the problem may not have a solution, the right food is crucial to me. I think if 'one size fitted all' we wouldn't need this forum!
do u have gluten ataxia?sounds like it. My gluten blood test came back normal so gluten was ruled out as a culprit. Also I have no stomach trouble a la Crones Disease.
My test came back normal, but I knew it would as I had given gluten up about 8 weeks previously, so no surprise there- I did not feel I had Coeliac disease anyway, though I might have, stomach has gone down....! Depending on what test you had, it may have no relevance anyway, you can have Gluten Ataxia and not register as gluten intolerant, the only test I have experienced is in reference to the gut- different and a separate matter for some gluten ataxia sufferers. I will ask to be referred on to a specialist unit where I hope they will say 'yay' or 'nay'. I have gleaned most of my knowledge from papers written by specialists from one of the units. After I stopped eating gluten, the difference to me was immediate, within 4 days, and incredibly slow since, with every little sniffle causing backwards steps in vision and especially balance. I expect you know all about that!
Any joy from the new diet?? xxN
Absolutely no joy..,..except that I have found some fascinating new foods: vegan cheeses which are actually not bad. Also jackfruit disguised as meat. English muffins that are quite good and can be used for little pizzas, etc. Although I do eat grass-fed beef and lots of fish. I may decide to give up chicken too as they do eat corn as vegetarian feed, I believe, and you are what you eat eats. But here is the weird thing: I actually feel much worse - my balance is way off and I am stumbling around being ever more fearful. It probably doesn't have anything to do with my new (3 months old) diet, but who can say? I think my nerves play a huge part of this whole disaster that is Ataxia, but which came first? Nerves acting up causing ataxia, or ataxia causing nerves to go haywire? I am exhausted from over-thinking and just being upright and awake.
I know what u mean. I wanted/want to change my diet but my neurologist did not encourage me.. Anyway nothing seems to work in my case although I do exercise and have recently began a new walking (with walker) project. Nevertheless I feel pretty hopeless. My balance is very poor, I choke if not careful; talking is exhausting, writing very bad, typing is slow and I have vision dsturbances . How's that for mental éxhaustion?? xN
I think changes require time for the body to respond. At least 3 months, and in my case, I am going for a whole year. Also, I am beginning to think my entire nervous system is the culprit...but did ataxia cause that - or did THAT cause ataxia?
U ask a good question . I think my ataxia came from my late, darling mom (auto immune) and/or extreme stress related to my divorce--which was very bitter. She had several odd things which were very autoimmune. She also was very nervous. I don't know if that is related.
Aha! Interesting. My mother, too, was very "nervous" and then late in life got "dizzy" a lot and would fall over. She was never diagnosed with anything specific as far as we know. She would never talk about it. She ended up in a wheelchair. Since I am way more involved in my own disease, I do not plan to end up that way.
Please, no worries Neta, as I thought you mean't to say "enjoy"...,ha! Anyway, that happens to me all the time, so you're certainly not alone in this...,lol!!! My best to you..., ;o)
wow what a load of replies & a lot of good ideas, I can only go by what's helped me. I do have to workhard daily I've had FA for 14yrs I'm able to walk with the support of a rolater in the house but use a scooter outdoors to save energy. I do like gardening but the way I do it is probably not recommended! but helps keep my muscle strength up & my mind more positive as I find if I'm feeling depressed that can make me less motivated to do much. Everyone has different ideas and ways to deal with their own ataxia , but I've found if I do too much all in one go, I'm then useless for 2 /3 days I tend to collapse & my speech becomes very slurred. short & regular exercise seems to help now. I don't know how able you are,but doing something that helps with strength & doesn't cause too much frustration as you won't keep it up. We all struggle and work at moving in our own ways so try to stay positive. Good luck! ☺
Dear Carol31271 Thanx 4 your detailed response .I have an exercise routine but toyed with the idea of throwing myself into a harder routine--not that I know I can do it. Like u, I a rollator indoors--a situation that is rapidly devolving. xx N
Thanks for your reply you've had so many responses its unreal ! it sounds like your in a similar boat to me, I guess a lot of us are! Thank goodness for sites like this for providing support and encouragement. Take care and good luck finding the best exercise and diet to suit you. xxx
My tech equipment is not too good. Anyway thanks for responding and your good wishes which I extend to you too .
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