I wonder if any one else has the same experience as me.
We all know how important exercise is for neurological conditions so I followed the conditions of a randomised American clinical trial comparing aerobic training with balance training. The participants spent 30 minutes five times a week for four weeks on a static bike. They were found to have much improved balance and gait when measured at the end of the trial though this didn’t last after the trial stopped.
Consequently I embarked on my own trial on my recliner static bike spending 30 minutes cycling four or five times a week. In contrast to the trial I found that after cycling this length of time I am so wobbly and unbalanced for a good few hours after! Previously I used to cycle around 15 minutes and was a bit more unbalanced after but I thought that perhaps I wasn’t cycling long enough to gain any benefit.
I would be interested to hear of others experience.
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Libra7
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Hi Libra7I too saw this research about 30 mins on an exercise bike. I have a cross trainer, used from way back before ataxia. Started at 5 mins aimed to build up but never got there, it was trembley legs and even poorer than usual balance that stopped me. Tried breaking it down so in-between 2 sessions a day but that proved difficult too. Think it's the oxygenation to the brain that's important so any exercise causing us to puff a bit is good.
There's lots of exercises on the Web, including ones for MS which are good. I walk taking my hubby's arm 3 to 4 times per week. If not walking then do exercises at home, over many years I know what suits me and don't beat myself up if it's a bad day and don't do many.
Yes we are told "use it or lose it" but "pace or bust" and "little and often" is just as relevant. So is doing something you enjoy, meditation and relaxation also helps. I enjoy drawing and knitting which preserves hands and arms. One thing that is good for us all is plenty of sleep, if sitting for long periods then get up and stretch those legs, do foot and ankle circles, stretch toes to keep blood circulation up.
12 years since my diagnosis of a progressive cerebellar ataxia, I see exercise as crucial. I am now 75, with SCA6 as well as another rare neurological disease so, to tweak a phrase from AtaxiaUK, this works for me - but may not for you.
I have found nothing that will slow the continual deterioration in balance and coordination. However as it gets harder to walk, even with a rollator, I find it essential to keep fit and maintain upper body strength. So, I visit the gym 2/3 times each week, and do a programme designed for me by a specialised trainer. Work on biceps, triceps and flexibility, with 15 minutes on a recumbent bike.
I can't say I enjoy it, have not felt the famed endorphins yet. However, it no longer feels like a chore and I am steadily increasing time, reps and resistance.
Yes I have found much the same as yours and previous response experiences. I have idiopathic CA triggered in late 50s and now 81. I resisted using wheelchair but now forced to do so almost full time. I still exercise every morning on vibropate and seated YouTube exercises. I don't think long spells of exercise helps but a bit of everything, every day is good. Stay safe and .. don't forget to smile xx
Short answer: I would say yes, but it depends on the individual as to how much is too much.
Long answer: I have spent the past year doing a lot of exercise, training for various activities and challenges. My experience is that with little exercise my Ataxia will get worse, with a moderate amount of exercise it is stable but progresses slowly. To put that in to context, I have been training in the last few months in my wheelchair for the London Marathon which I did a couple of weeks ago. Without the months of training I would not have completed it. But when I trained too much I was wiped out for a week, when I trained too little I had energy put was very wobbly. It took awhile, but I found a sweet spot in between where I could improve my stamina and strength without getting wiped out for a few days, this period gradually got longer, but it was a slow to do. I think that everyone can do something, it might be lifting a can of beans. Once to start off with and then after a few months 10 times, or it might be 100 meters in your wheelchair and after a few months 1000 meters in your wheelchair or sticks or without sticks. The point I am making is that improvements come with bumps in the road and may not feel like improvements at the time. Find you sweet spot and keep going, your improvement might be slowing down symptoms, it might be stabilizing symptoms, you might get some improvements. You will get something out of it.
hi, I’m 52 had this all my life.I have a 3 wheeled bike and the freedom I have is brilliant. I do aqua mobility once a week every week, I listen to my body it lets me know if it’s to much.i feel it all helps..
Exercise is a difficult one for many reasons. It’s not something that you should get to complicated. Sometimes you can get enough exercise with housework, gardening, DIY and shopping to name a few. Don’t get stressed if you don’t seem to making progress if you do you can sometimes gain on the body but loose with the brain. Swimming is good as you use all your muscles without the strain. Just keep the body moving, Socialise and a good diet.
Hi Libra7I have read the same about the benefits of exercise but can only manage two or three times a week..we can hope it will benefit but am not feeling it yet...but any exercise to maintain muscle mass and improvement to cardiovascular fitness seems like it can only be a good thing. I have recently started some balance training too.
I definitely feel better mentally..as if I am doing the best I can and taking some control..I hope you feel this too..keep up the good work!!
Hi i dont know thé answer but i think you need to liscen to your body i do phsio 1 hr a week in à super clinique we work in à group its good fun ..i poodle all day i have many things to do but i dont do àny exercés my poodleing is fine good luck x
Hi Libra 7, I was diagnosed with sca 48 in 2006/7. For the last four years I've followed a strict exercise regime. A few years ago I had an exercise bike but swapped it for a rowing machine for the same reason as you, ie wobbly legs.I do just over an hour of balance, strength and cardio 5 days a week. My neurologist says my sara scales have improved from 16 in 2018 to 12 earlier this year! Also I'm having less falls as I'm now able to regain my balance easier. If you'd like to know what exactly I do let me know. We're not going to get miraculous results but it was good to know that my efforts are helping.
Hi Libra 7No problem, I do 20 reps on each leg supported by the kitchen worktop if I need to grab it. They're like a lunge but you just take the weight on your front leg for a couple of seconds. Then I place is my feet so the big toe is just touching my opposite heel. Balance and try to hold it for 30 seconds, repeat on the other side. My PT tried to get me to have my feet totally in line, but it's much too difficult for me. Next balance on one leg for 10 seconds each leg, I can rarely do it for 10 seconds, but I think it's good to challenge yourself.
I use a physio mat (pic attached). Stand on it for 1 minute with eyes closed, again very near a kitchen worktop if support needed.
Then 40 calf raises, 50 squats, standing feet shoulder width apart, step forward with one leg (not too far, or you'll use your balance) 20 times, swap sides. Then step to the side 20 times on each leg. Use a thereaband on your ankles, using a wall for support, take each leg back 20 times. After 20th do 10 small movements with the band stretched. As this helps increase fine movement control.
40 seconds each side like a superman exercise again hard at first but gets it easier. Helps with muscle control.
3 minutes plank quite hard but very beneficial for core strength.ans extremely important still on the floor, lay on side and the raise each leg by a couple of feet 40 times. This hugely strengthens hip flexor muscles, which the ataxic gate unfortunately causes us to use more .
Finally 30 minutes vigorous cardio with the rower, very important for heart health as ataxians tend to be quite sedanteary.
Sounds like an awful lot when you list it, also reduce time and reps at the start and increase gradually.
I'm 55 and have been doing it long enough that if I don't do it I feel guilty, I guess that means I'm addicted. But that's a good!
Wow! That’s absolutely admirable and I’m sure the fact that you do the exercises so regularly has produced such great results. I used to do many of the exercises you outlined and I really should have persevered with them all .The confirmation that you have reduced your Sara score is very encouraging.
.I don’t like making excuses because of my age (83) but I think it is perhaps wise to not to go too mad! I already do 20 squats a day holding on to my frame. I also do 20 wall pushups each day which I feel strengthens my arms. Similarly to strengthen the bones in my legs I do 50 jumps (without leaving the floor). I stand from sitting 10 times each day keeping the table in front of me in case I loose my balance.
I guess we can all only do our best. Thank you for your post. Good luck.
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64 with Friedreich's Ataxia
Weight control and exercise, not easy when you have CA.
What support did you get after diagnosis, and how were you told?
A new level of well being. I wish more would try.
Quantum therapy for SCA
