I have heard many doctors and people perpetuate this myth...many people advise us that weakness is the main issue for Ataxians.
Now, my condition is different from others, but in my case, I feel strength and muscle is not the issue. I feel the problem is in the signal from the cerebellum.
To test the theory, I joined a gym and even have a personal trainer and have put on muscle and can lift much heavier weights on the machines. So, I built up my muscles and strength but still have the same Ataxia issues as before.
So, muscle may not be the issue.
I know some people have muscle wasting and that is a different issue from mine.
I feel proprioception and core strength would help and so I do Yoga and an abs workout for it.
This is very interesting to me as I read about it in recent issue of th Ataxian [Ataxia UK Magazine] in questions and answers.
The response was that there have been some trials in the past which were inconclusive. There is a current trial in USA but results wont be known for couple of years.
Exercise is good for people with ataxia but it has to be balanced with energy and it is important to pace yourself .. do not over do it.
You should not push yourself beyond your personal exhaustion point but keeping fit is really important.
I have no doubt that the type of ataxia is very relevant and indeed one's age.
Hi Sentient SF, I am glad you still have strength. Try and keep it. I got Ataxia when I was 45. Had strength till I was about 50. But then after that no matter what I did. I lost it all. For 5 years I still beat my kids in arm wrestling. lol I could bench press 65 pounds. For me that was good. I only weighted 100 pounds at the time. At 48 I was in great shape with ataxia. My doctor was impressed. Now at 52 I'm loosening all my muscle so I weigh 87. So keep up the hard work. It just might pay off! Happy for you!
I am the same, I have always been strong. I can work out and still work around the house (newly diagnosed) but no matter how much muscle building, exercise and balance work I do I am losing the battle on ataxia. BUT, I wonder how much worse I would be if I did nothing?
Hello Sentient SF, I was diagnosed with SCA 6 when I was 52 years old. I am now 61 yeas of age. I work out consistently 5 days a week; upper body M W & F, lower body on T & T and the eliptical 30 minutes consistently 6 days a week. Sundays is a day of rest. At my age I only work out to maintain my strength and to tone my muscles which is only bench pressing 90 pounds. I used to compete in body building when I was in my 30s. The most that I bench pressed was 225 pounds without a spot. I wouldn't dare to attempt that much weight now. In the last few years I did attempt to lift heavier weigh and I find myself in a dilemma when I couldn't put the bar back on the rack. The older you get you lose muscle mass and it picks up speed in your 50s. The muscle loss begins to outpace the rate of muscle gain. As you age, physical exercise becomes an ever more important aspect of optimal health and longevity. Weigh lifting is supposed to help your balance. However, you can't control your cerebrum signals. I'm just now being content with my ataxia. After all, it's been 9 years since the onset. I'm always looking for ways of improving my new lifestyle and God has helped me in more ways than one. Through prayer, I have learned to cope.
I don't think my Ataxia affects my muscles either. In fact I have an adult trike which is my main means of transportation. I've even cycled in 3 of the 4 Ride to Conquer Cancer. I like to say that my legs are built for power not speed.
I'm 59 years young, diagnosed with ataxia 10 years ago. I agree with others, you lose muscle mass as you age. I do exercises for strength and balance, as I believe in helps my ataxia. If not, it certainly helps my overall health and well-being! After 10 years, I finally accept my ataxia (it's been an exhausting battle), which is refreshing, although I won't give up or give in! My neurologist/researcher says that there's been successful studies in rodent brains that show the brain can make new neural pathways. The key is to keep challenging yourself. For example, I do a balance exercise where I stand at the ledge between my kitchen and family room (in case I have to grab on if I start to fall). Without holding on, I bend one knee lifting one foot and balance for as many second as I can, then do the other leg. I keep trying to up the seconds, hence challenging myself. I do floor exercises with bands and light weights, as well as some yoga. I walk on a treadmill (holding on). I try to exercise an hour each day continuously (per my neuro), although I rest a bit when tired. (I've posted this info several times before, so please forgive me if you've already read it ...,ha!) My best to you..., ;o)
I am 59 yr old male with SCA6 for 12 yrs. I ride a recumbant trike 5 to 7 mls when i go out. I go to the YMCA and work out. Exercise and prayer helps me cope with my situation with Ataxia.
My mom is 76 with SCA6 and does water arobics 2 times per week for the past 20 yrs. Exercise is the definant therapy for Ataxia! You must keep moving or you will loose any ability to move in the future.
I know that being intentional about muscle strength will help me to fight against the ataxia. What my brain signals won't do, perhaps my muscles can compensate for. I even exercise my hands since I drop stuff all the time. Brain signals skip a beat or just don't go at all to tell my hand "hold on!".
Exercise also has helped me with my emotional issues. I have a sense of being more in control when I exercise and the endorphins are a nice perk!
My Physiotherapist told me that she had a triple S plan for me. She said the goals were building strength, stability and stamina. The idea was that if my balance was a problem, we needed to work on having the best chance of my body being able to right itself and to be stable when moving. Stronger muscle and joint support means less injury with twists and falls.
My issues have been left side weakness and major balance issues post stroke/ brain injury.
I have to keep changing my physiotherapy as I can no longer do some of the exercises.Anything which requires balance is difficult and sometimes impossible.We use our balance so much in every day chores.
It's only when we lose it we realise how often we use balance-you should see me trying to put any form of foot wear on.
I have a technique and it involves a lot of rolling.
Sorry Marie, but that was funny.My bed doesn't have a box spring so it is low to the ground. This helps alot with my shoes. yea Rose was saying how she stands on one foot for however long. Not me. The minute I put my foot up. I tumble. I do this hour long yoga sometimes. But their is a part in it. That I cant do. Whats bad is when we are so busy at something and we forget for a moment we can not balance. Ouch!
Even worse when you fall over with the indoor rollator on top of you.O/T suggested higher settee.So now I have got a toilet,settee and bed I can get out of but have to be a contortionist to get footwear on.Can't win.
With CA I find my muscle strength is declining slowly. Physical therapy is helping me and I use a walker indoors and wheel chair outside. It is a gift to have your muscle strength in tact. Gain of any kind is welcome and my best wishes to you.
The physio was helpful to a point but then I found a physiotherapist that is also a Tai Chi teacher and she started an adapted class... now that made a HUGE difference. Then there is aquatic therapy with a qualified instructor. ... can't fall down and hit the ground and the water pressure actually supports your limbs and body. I still start to topple over a lot but am much better at stabiizing myself.
Lori said:
Linda how is all that been working for you? My doctor said the same thing. But its not working so go for me. It all sounded good. lol
It was getting undressed to get in the pool that was a problem for me but I did go to for two years.There was quite a mix there.I met lots of nice people therefrom MS to hip replacements getting well.We went for coffee and cake afterwards.
I think our circumstances change.It was good for me then.now I am just trying to survive cheerfully and that's a challenge.
The key for us is adapted exercises.Ordinary physio only works for some and not for others.
Swimming was good exercise for me then .Now I have to have a driver I think it is a matter of priorities now and I have to balance things out beetween mental,physical and spiritual. I think a lot of us maybe in a similar circumstance but I am glad you have found something for now which helps.We are all on different stages of the journey.
I agree in that the muscle weakness seems more a symptom of the main issue rather than the issue itself. I have Friedreich's Ataxia. My thinking is that the lack of communication in the nervous system, between the brain and everything else, means that muscles aren't told how to use the existing strength properly. Therefore both fade from lack of use - this not being a conscious decision, but rather as a result of the issue of the nervous system not being able to use either.