Exercising Yay or Nay

[paullymaie-]

Just been diagnosed with Ataxia, not sure which type yet, got to see the neurologist to hopefully find out. I'm very conscious of the fact that my muscles will be wasting away because I'm not moving around much due to my unstable gait so hubby is trying to encourage me to exercise to gain strength. In his head exercise is a cure all but I'm willing to give it a go. Has anyone found a rowing machine beneficial? Thought about an exercise bike but feel it will only strengthen my legs and not my arms and back. I feel really sad that our days of rambling for hours in the countryside is over as I'm really unsteady now and boy the exhaustion when just walking a few metres.

[LOVELY_1]

I think maybe an exercise bike and a few balance exercises could help but make sure that you are near something to grab on if you feel unsteady. An exercise ball is good to for balance but you should ask to be refered to a physiotherapist. Ask your doctor.

Good luck

[paullymaie- in reply to LOVELY_1]

Thanks for replying. I am going to ask the doc for advice but just feel I need to be proactive. Annoyingly I gave an exercise ball away not long ago, good idea tho will have to get another. Have a good Xmas. Xx

[Catherine100]

All the different ataxias vary wildly, so until you find out which you've got, it's difficult to know how you will progress. Don't give up on the rambles. Just pace yourself with a lot of breaks. I couldn't use a rowing machine as it would make me very dizzy. Whatever exercise you do, take your time. It's not going to be about building it up, but about doing little and often. Good luck with the diagnosis. There are support groups out there.

[paullymaie- in reply to Catherine100]

Thank you Catherine100, good point to about the rowing machine, hadn't thought of that. If I move my head quickly I really go off balance and tho I would be seated it would feel weird. Think I'll stick to the bike idea. Have a good Xmas. Xx

[LJH3]

I have FA and would say just do what you can exercise wise! I go to the gym & use the bike & treadmill but just walking up hill & I have to hold on (if I ran on it I'd fall!) I also use the machine that's like the bike but you do it with your arms (sorry don't know what it's called!) I have also been told swimming is great for Ataxia! Oh & finally there are plenty of recommended exercises for Ataxia online! Hope that helps, most of all..... stay positive!

[paullymaie- in reply to LJH3]

Thanks for replying. I think hubby and I are going to visit our local gym in Oswestry after Christmas and he can help me while I try the equipment. Meanwhile I'm going to look on line for some exercises. I'm doing my best to stay positive but it's difficult when I don't know what type of Ataxia I've got, hopefully an appointment with the neurologist will come in the new year answer he will answer my questions. Happy Christmas. Xx

[Jay1972]

I have SCA2 and go to the local gym. I don't use the treadmill for obvious reasons but I am able to use the majority of equipment including the exercise bike and a hand cycling machine. Yes, it is very tiring but if you pace yourself it is doable. Exercise is most definitely not a cure and shouldn't be thought of as such but what you need to do is keep your core muscles strong as this will aid your balance. Also, as I am registered disabled, I get my membership at half price so it's worth checking out how much it will cost you. Some gyms, particularly local authority run ones, offer a GP referral program where you get your GP to refer you and you get a few sessions for free. If you speak to a trainer at your local gym I am sure that they will be able to come up with a program to suit you. Good luck!

[Litty]

Right good luck with diagnosis.

I find any exercise good. I use both bike and rowing machine. Variety good. Sounds silly too but I ballroom dance once a week. I cannot walk without a frame but but I can dance! Until you cannot do something have a go. Good luck and Happy Christmas :

[paullymaie- in reply to Litty]

What a lovely positive reply, thank you. I,like you need support when walking along and I use a stick in one hand and cling on firmly to hubby's arm so perhaps ballroom dancing would be a great idea, a touch of the "Strictly" may be just what I need. Happy Christmas

[Litty in reply to paullymaie-]

Oh I am hopeless! I too really missed my walks around our fields (so lucky to have them). I asked for tips years ago on the Living with Ataxia site and a lovely american fireman me his trick. He uses a yummy mummy jogger pram that he converted (take everything off and weigh the front. I was going to buy a new one but the Baby Jogger Company were lovely and told me to get a second hand one off Ebay because older models have bigger wheels.

Here HOPEFULLY is a photo

file:///Users/litsmith/Desktop/Screen%20Shot%202016-12-23%20at%2018.26.10.png

[Litty in reply to Litty]

No that did not work - try the beginning of this film I did for my daughter's school

youtube.com/watch?v=_LGbWKO...(Not working as expected?)

[CharlotteIndi]

My mother showed great control the more stretgth she had through exercise which made her condition easier to live with. Unfortunately now her symptoms have severly worsened but from what ive seen in the past, exercise helps grately. Its good for the mind too. Good luck with everything xxx

[paullymaie- in reply to CharlotteIndi]

I'm sorry to hear about your mother. I'm determined to try to do some sort of exercises as I agree with you that if you strengthen your core it should help me with my balance. It's just getting going when you feel rubbish and dealing with constant balance problems is making me a bit miserable at the moment but when I know what type of Ataxia I've got I'll be able to face my future more positively. Thank you. Xxx

[CharlotteIndi in reply to paullymaie-]

All the best & never give up hope xxxx

[Iain_100]

I have a friend with ataxia who swears by his recumbent exercise bike. Because he is lying back, and near the ground, he has no fear of falling off/balance issues.

I think exercise in general is a very good thing. It maintains your overall health, so you are coping with ataxia from the best position. But as others have said, be sure not to overdo it. You'll know your own limits. A little, often, is definitely best.

But the most important benefit of exercise, IMHO, is mental. Exercise releases hormones that make us feel better about ourselves, and our situation.

As Lit points out - do what you can to make yourself feel good. And enjoy it

As for the rambling, I completely understand. I used to enjoy this a lot. And still do, of a fashion!

But the most important lesson that I learned, is not to think about the things I can no longer do, but to concentrate on what I still can.

[goodenough]

I know how you feel. I live alone and fetching things I need is exhausting to say the least! I do armchair Tai Chi and exercise my legs with pedals ( not a bike). These exercisers can also be used for arms. I think exercise is a good thing. Keeps the strength up. Happy Christmas. Goodenough

[Hidden in reply to goodenough]

I also live alone and got cerebellum ataxia I try to keep walking Happy Christmas and Happy New year to you.

[Sunny8088]

This might help

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[Sunny8088]

'h t t p s://youtube.com/watch?v=TjAGb9H...(Not working as expected?)

https is one word

[guyverthree]

I'm 32 and have por cerebella ataxia and have been doing heavy weights for years and I think a rowing machine would be a great idea. Keeping moving will make you feel better, I really think that going to the hard place when exercising is a good thing, for me that hard place is still in the gym or running walking but when I can't do that I'll row or cycle, if you find a good rowing plan sick with it, it does help, I also have a Wii that I use with my children that keeps my balance up, just keep moving forward and have fun with it....

[february]

Dear Paullymaie, Exercise anyway you can, as if you don't use it, you lose it! Just make sure you don't over-due, frequent resting in between helps me. Also, I bought an Access Active Rollator online (I think on Amazon?) which I use for pleasure walking outside. I love it as it has two fairly large wheels on the front and two smaller wheels on the back. It travels easily over grass or dirt and has seat if I need to sit and rest, as well as a basket under the seat which I use for my water bottle and kleenex...,whatever. I exercise in my home for strength and balance and hold onto sturdy items like the kitchen counter or the back on the couch. I especially like laying on the floor to exercise (no chance of falling), although getting back up is a bit of a challenge, but doable for me...,ha! You can Google disabled exercises for strength and balance, as there's plenty of them! Just try to keep moving the best you can! My best to you..., ;o)

[Cubsfan]

Any exercise is important. I keep finding new ones to experiment with in addition to my daily routine. Exercise bikes have been great for me. Exercise is a very important treatment

[Hidden]

I have cerebellum ataxia was diagnosed in 1997 found going for short walk helps I also got coronary heart disease I have just got my laptop and getting used to it look forward to hearing from you Happy Christmas and Happy New year to you.

[sylviagreenhalgh]

I go to 3 exercise classes a week- the participants are mainly retired people but I am the most disabled - the main thing to do is to tell the teacher about your condition- I give them the card from ataxia uk which is short and to the point. yes my muscles are poor and it is a pain not todo what you want to do. it took 5 years to be diagnosed- by then my partner had left me cos he could not cope with my illness. It is important to focus on what you cna still do rather than look at the past, which is history and the future may be better than you may think. Apart from the cerebellar ataxia I have normal pressure hydrocephalus and spinal taps have improved my mobility. the main thing is that you have an experienced neurologist. I asked for a second opinion and then was referred by the rheumatologist to a wonderful neurologist who takes a real interest in rare illnesses so plough on. I used to be a great walker, play the violin in an orchestra etc and can no longer do any of these things. I found once I accepted my illness everything got better . so don't give up hope . love Sylviaxx

[timk Volunteer]

In addition to what has been suggested, it was a neurophysiologist that I saw that was able to suggest exercises that really helped my balance. After doing them for some months, I had a slight improvement on my SARA score (a test that they carry out and then score at my annual ataxia assessment, where I have to do different physical exercises so that my consultant can see how well I do).

Also, although I was diagnosed with ataxia some five or six years ago, I still do not know what type of cerebellar ataxia I have because, despite a blood test, they could not diagnose the specific one. Quite a large percentage of people with cerebellar ataxia do not have a number and so we have what is called an idiopathic SCA; I think almost 50% of the people with SCAs have an idiopathic SCA, so there is quite a chance that they may not yet have a diagnosis for which SCA you have. Just bear that in mind.

And, as others have said, exercise is really helpful and important, but not a cure.

[berejena]

Hi paullymaie, I use an excercise bike & walk a bit hanging onto my husband. Lately my balance etc is worse so I don't walk as far. Other excercises might help but ask your doctor.

All the best

Berejena

[fbirder]

I would recommend swimming. It has many advantages. No chance of falling over once you're in the water. If you get tired then you're just a few metres away from somewhere to hang on for a rest. Once you've had enough it's a short distance to the changing room and the car. You can vary the amount of energy you put into it. It can exercise all your muscles.

Most pools have special aqua-aerobics sessions as well as ordinary lane-swimming.

[jill55]

I have found using walking poles gives me more confidence and stability.

[AnnaP2016]

For me it's definitely swimming. I have episodic attacks of ataxia (no diagnosis yet but I suspect it's Gluten Ataxia) and my symptoms fluctuate during the course of the day. I never had an attack when I'm swimming cuz I think it place less demands on my cerebellum. In fact I enjoy being so clear headed without dizziness so much I wish I live on the water so I can swim whenever I like. Definitely try swimming imo.

[RowanShukla]

My dad has Spinocerebellar Ataxia Sca 3 and witnessing how his body has deteriorated over time I would recommend to do some form of regular exercise that uses of the whole body and requires movement so your can maintain your mobility in conjunction with your strength work. Possibly some disabled yoga classes, dance, pilates etc. Or even just moving your body in your living room while listening to music so you are moving your spine, which is something that won't really be used that much by using machines at the gym. Don't get me wrong, the machines are great! I just think it may be beneficial to do some sort of movement practise too. Hope this has helped