Exercise

General
1

Hello all, untill 2 years ago I used a mountain bike for fitness even though I was diagnosed in '07. When my ataxia progressed and made it too dangerous to use the bike, I bought a static exercise bike but now even using this leaves my legs very wobbly for a couple of days, so I don't really use that either now.

My Question is what are some of the things you all do for exercise? I'm very concerned that mainly sitting at home, in the car or at work is mainly a very sedinatery lifestyle is that isnot good for the heart.

Untill about 2010 I used to swim, cycle, walk alot, but now not doing anything much is a bit of a concern to me.

Thanks for reading and I look forrward to some of your suggestions/advice.

2

I work out like a crazy man. I run, ride my bike, lift weights, stretch, cardio, xbox kinnect. I work out at least 2 hours a day sometime more.

3

Hi Martin,

I've been wanting to ask the same question for a while now.

I guess you've beat me to it.

Regards,

JM

4

That's interesting.. I had wondered whether cyclists could continue to cycle as it is very different to walking.

I have electric indoor peddler but I get so tired that I cant motivate myself to use it.. I do use wii fit most days but even that routine is beginning to slip. I get through the stretching exercises but then cant discipline myself to continue with the faster movements. So feeble.. Would recommend the wii though.. I used to love it but the novelty has worn off.

Patsy

CA/70/UK

5

Our bodies are all different . Nobody seems to be able to offer advise and it seems that it is trial and error.

I used to be active and now struggle. At the moment I am working on core strength exercises while laying down - no danger of falling and this seems to be helpful for me. The thing is to slowly build up an exercise programme that suits our bodies .

I am not medically trained but have found this out through paying to see physios. It is no use going to an exercise class because we all have different needs.

I was offered a course of t'ai chi at our local hospital but even that was too much.

6

I too had been very active in outdoor persuits. I am still strong so if I have something to hang on to, like a lawn mower or roto-tiller, I can still get a good work out. Yes, I do get wobbly and out of breath but hey that’s why they invented easy chairs. I am a compulsive doer. Even though I stagger a lot and do fall in my back yard I don’t get stressed out by having people coming to my aide if this happens in public. My advice is to start some sort of project that you could enjoy, such as gardening, building something, or even painting your residence. Redecorating involves a lot of moving things around and putting them back. Plenty of exercise there. Start with one room and by the time you have done the last room the first one can be done again.

7

In the beginning I would rest and rest. I thought the rest would make me better and stronger like other illness. But no, I deterioted everday, everyday it became more difficult to do the simplest tasks. I would be out of breath, shaking, falling, feeling very unsteady. At this time I really started doing the research on ataxia and looking for people with experience. I found a common thread, the people who exercised and pushed themselves without pushing too much seemed to be doing better, some gaining, some remaining steady without further losses. I began exercising and pushing myself. no matter how poorly I performed, I kept at it. It was exhausting and often I would fall into the bed after the task and sleep for 2 hours and not feel any better when I woke. Gradually I improved. I am now able to run across a street when I need to, I can ride my bike on level ground, I have resumed surfing, I work as a landscape designer again, and can even get away without a nap on most days. I eat gluten free, yeast free, soy free, no grains. No alcohol, no caffeine. If I let a few days go buy without exercise I immediately start deterioting in my skills. Of course I don’t know what will happen in the future, but so far it is working. I am 52, symptoms started at 47 but maybe always there looking back. It’s worth a try, the key is consistency.

8

Hello all;

I can't use the stationary bike because I can't keep my feet on the pedals. I guess that's the disadvantage of having size 13 feet.

I invested in an Eliptical machine. I have the Schwinn 431. It falls under the Nautilus brand. I bought it 2 1/2 years ago. The Schwinn 431 is more compact than the others and the foot pedals have big cups to place your feet in so there is no way of your feet sliding off the pedals. I don't use the program features since I only use it for cardio. The more you work your core muscles, you get stronger anyway. In addition, I lift weights. I work my legs and back on Tuesday and Thursday and I work my upper body on Mondays, Wednesdays and Friday for 45 minutes. I use the elliptical 6 days a week for 30 minutes.

I used to belong to a Gym but I let my membership expire. Now I know why I let that happen. I can't walk around obstacles. I could have seriously hurt myself. I don't do the heavy that I used to do, I just do what is comfortable and if it's too comfortable, I just add a little more weight. The key is working all your core muscles.

9

My neurologists says to keep active at least an hour each day. I exercise for strength (leg lifts/push-ups with light hand weights and bands) and balance, although some days are more difficult than others. I use rocker and wobble boards (at the ledge, I bought them on Amazon), as well as a stationary foot bike (also bought on Amazon) when sitting and watching TV or reading. I stretch my muscles each day too. I guess I'm with the thought if you don't use it, you lose it. JUst try to keep moving! Of course, do what you can as safely as possible. I walk on a treadmill, as I can hold on, and do things for balance at my counter between my family room and kitchen. For instance, I stand on one foot for as many seconds as possible, than the other. I can grab onto the counter in case I lose my balance! My neurologist says to keep challenging myself (up the seconds), as he said there's been studies that show one can make new neural pathways in the brain. I have trekking poles that I use to take walks outside, as I use a cane otherwise. I try to eat healthy (veggies and fruit) and get enough sleep. I also rest if need be. ;o)

10

Hi Martin and all,

Though it is believed that I have had some form of ataxia for most if not all my life, it was only about five years ago that things started to get bad for me with falls and such. Then in 2009, after a fall at work that resulted in a bad knee injury, I was given tests and eventually told that I have ataxia. (I also suffer with fibromyalgia but that's another story!)

I had quite an active life / routine before my ataxia kicked in so to say. I would sometimes hike, swim or cycle in my free time and my work life was always active - early on I worked in a very physically demanding job in an industrial laundry, I moved to working in a shop and doing most delivery 'shifts' then I spent two years lifting large heavy timbers of up to four metres long by hand. in a warehouse job.

In short, I became very less active when the ataxia really took hold.

I have an exercise bike but can no longer use it safely - have fallen from it several times trying to get on or off. I used to go two or three times for hourly sessions to a local gym but there where staffing issues and timetable changes that have made it difficult at best for me to use the gym.

So what now?

I have recently bought one of those mini exercise bikes and use it while seated in a comfortable chair. I also use the bike (just a set of pedals with a fly wheel arrangement) on a table top so I can pedal with my arms. I also have an exercise step that I put in a doorway so I can hold the door frame as I do my steps. A lever spring piece of equipment is used for 'arm pushes' and I have spring grips to exercise my hands. I have sand filled wrist / leg weights that fasten around the wrist / leg to give resistance or weight as I do lifts / stretches. lastly, I do 'physio' exercises everyday with head tilting and neck rotation.

I too feel that sitting around doing nothing all day is probably a bad thing and have been told this is so by family, friends, my GP, neurologist and physiotherapist. They are all, of course, correct.

I cannot always do all of the twelve point exercise plan I made out for myself and told my GP about (she said it was a good plan) but I try to do at least some of it every day. On a bad day I do a minimal of the neck and head exercises and some stretching. On better days, I do up to an hour of the exercises on the plan. Also, though my walking continues to deteriorate, I try to go up and down our stairs a couple of times a day - even if it be slowly! We have a straight up through the floor lift in our house and I need to use it often but try the stairs when I feel up to it. I use a mobility scooter about town but always take my walking sticks and try to do a little walking with their aid.

Though there is nothing wrong with pushing ourselves now and then, I find the most important thing for me when exercising is not to over do it as this can have very real negative affects.

Keep well all.

Michael.

11

My adult trke is my main means of transportation.

12

If you have access to a pool, I love exercising in the pool, it is so much easier and safer for those of us with ataxia. I have to walk there most of the time, it isn't too terribly far, but I do have to use my rollator, so that is a little more exercise. I live in San Diego and the weather here is great most every day, and I live in an apartment that has 2 awesome pools. But, that is what I do.

Kathy

13

Martin, weight-training with a Professional Personal Trainer with experience with clients recovering from strokes and other disabilities.

Seven years ago when I was dragging my right leg, I decided that I needed disciplined weight-training to build leg strength to compensate for dead nerves in my leg (minor stroke). On the leg press, I managed to do 3 sets of 10 reps at 50 pounds. A year and a half later, I was at 5 sets, 10 reps at 320 pounds.

Sounds like perseverance and "Die Trying". However, another minor stroke seriously impacted my strength and endurance. Now, it's a struggle to do 3 sets, 5 reps at 160 pounds. Progression of our condition was on the move. The good news is that I workout 7 days a week with my trainer and have reached a plateau of further weakness. The decrease in strength and endurance, as I understand it, can only be maintained--no going back to the "good old days"

As JC emphasized in an earlier post: " With Ataxia we must be careful not to fall and get injured"...so true for those of us who push the envelope...I, in fact, learned the lesson when I fell and had multiple fractures in my "good" leg in Oct 2012 with accompanied arthritis--almost a year and the pain persists.

14

I have no special machine, just running in place for half an hour daily followed by a floor routine which is a combo of exercises from the gym and the physio, and walking alot. I do believe in rest however. And in the evening I sit in my TV chair or read a book. It's impt, too, to "feel normal".I try not to focus on it 24/7 (not so easy) I don't use a cane or sticks. The fear factor is very real and I now take escalators where I once was too scared to. Good luck!

15

If you like to bike, I bought a recumbent trike. It’s a different kind of exercise than a regular bike (all legs, pretty tough)’ but no balance required. Good way to get outside too!!

PS Jack wasn’t kidding that he’s an exercise maniac!! And it’s paying off too.

Kathy

16

I use the elliptical trainer at the gum and hold the hand rails. I do not go very fast but it is something.

17


Hi Cathy. I like the Ice trikes, what have you gone for?
Kathy G said:

If you like to bike, I bought a recumbent trike. It's a different kind of exercise than a regular bike (all legs, pretty tough)' but no balance required. Good way to get outside too!!

PS Jack wasn't kidding that he's an exercise maniac!! And it's paying off too.

Kathy
18

What do mean?? What type?

19

Exercise can be a double-edge sword sometimes - you want to maintain your muscle tone without atrophy; however, doing so without breaking something. But where there’s a will, there’s a way, as the saying goes.

To exercise without taking the risk of falling, have you considered doing yoga or some other form of exercise in a chair or on the floor?

20

Kathy

There's a company called "Ice trikes". that make 3 main modals of recumbent trikes. I just wondered if you were a customer? From your reaction, you're not.

Kathy G said:

What do mean?? What type?