Staying Active?

Hi All,

I was recently diagnosed with some sort of an ataxia. Going through all the genetic tests now to identify which specific one. This is all new to me. I've always been extremely athletic and I'm wondering if you have any tips on how to make certain sports/activities adaptive to my balance and gait issues. For example, I love running, but one of my legs is a lot weaker and more awkward than the other. I've found that forearm crutches are extremely helpful when I walk, but they won't work for running.

I've been looking for sports companies/stores that create adaptive sports equipment, but I've mostly found things for amputees. Any tips? Other sports I'm interested in continuing include hiking, mountain climbing, and surfing. Of course I'm sure not all of those will be possible in the future, but I'm hoping to do as much as I can now before this continues to progress. Thanks for the help!

Stay as active as you can. I modified a baby jogger to use walking by jogging. I spent about three hours a day in the gym and at home doing cardio, weight, and stretching routines. Look into getting a recumbent trike, I have one and ride it 10 miles every other day on a routine basis. Staying this active has definitely slowed down the progression of this disease in my case

Jack

Thanks a lot! I used to be a big biker but can't trust myself to stay on my bike, so I put my road bike on a trainer and have been doing that, but the spasticity in my bad leg gets really bad when I bike for too long. There's also muscle atrophy, which I really hope I can reverse. I've been trying for months to build up my endurance, but I get really bad (dizzy, wobbly, weak, ect.) when I push it.

Jack said:

Stay as active as you can. I modified a baby jogger to use walking by jogging. I spent about three hours a day in the gym and at home doing cardio, weight, and stretching routines. Look into getting a recumbent trike, I have one and ride it 10 miles every other day on a routine basis. Staying this active has definitely slowed down the progression of this disease in my case

Jack

Hi - My balance is the biggest issue. Holding onto something helps me, sitting down to work out, and/or getting on the floor to exercise allows me safety while still enabling me to exercise.



I’m not a huge runner, but I have tried and am able to use both an elliptical machine and a treadmill. Both allow a person to hang on to something.



If you’re doing pre- or post-stretches, you might try doing some on the floor or holding onto something like the couch-back.



Also, for biking, you might consider an adult trike. There are some, recumbent trikes, that are closer to the ground, depending on your needs.

Hi, I have the opposite problem in that I cannot walk in a straight line, let alone run. My balance issues are virtually non-existant when I am on a bike though I cannot for reasons of fatigue ride more than once a week with my club. I have been seeing a neuro physiotherapist who has set me a program of balance ball exercises. These are quite tough and it's early days yet but my overall balance does seem to be slightly improving.

runner said:

Thanks a lot! I used to be a big biker but can't trust myself to stay on my bike, so I put my road bike on a trainer and have been doing that, but the spasticity in my bad leg gets really bad when I bike for too long. There's also muscle atrophy, which I really hope I can reverse. I've been trying for months to build up my endurance, but I get really bad (dizzy, wobbly, weak, ect.) when I push it.

Jack said:

Stay as active as you can. I modified a baby jogger to use walking by jogging. I spent about three hours a day in the gym and at home doing cardio, weight, and stretching routines. Look into getting a recumbent trike, I have one and ride it 10 miles every other day on a routine basis. Staying this active has definitely slowed down the progression of this disease in my case

Jack

I too am a surfer. I think all the times that I was falling on my surfboard and the muscle memories that I created from trying to prevent the falls is really saving my butt on land now.

In the beginning I thought rest was the answer. It just made me weaker and I was just as tired.

Thru research online I learned that the people who were exercising and pushing themselves in some if not all cases showed improvement.

I do a lot of things I do not like now. Walking and biking. In doing these things on a regular basis it has brought me back to surfing.

Don’t give up. Keep trying and hopefully you will see improvement.

It’s not easy but doable and worth it!

I used to get dizzy too but I changed my diet and that really helped. I drink a nutribullet shake every morning and lots of fruits, vegetables, lean protein, tree nuts, seeds, non gmo, and gluten free. I lowered my amount of eating carbs to at one meal a day. Even though i dont think i have a gluten allergy, I felt so much better when i stopped eating whole wheat carbs.

I have to admit i am weak and love to eat pasta, pizza and cake and ice cream so i leave those for maybe once or twice a month during the weekends.

i barely have time to exercise because i work full time but my PT told me to stretch every morning and night for 5-10 minutes and that has helped me function well too.

I also bought a balance wear vest recently to see if it would help my balance. Ive been wearing it for two weeks now and im loving it because it has given me confidence to move around the crazy busiest city in the world (NYC). and it has taken away my fear of falling.

I ride a recumbent trike. I did the 50 mile ride Ataxia Philly yesterday! Keeps me very active.

Dear Runner, I have an Access Active Rollator that I purchased on Amazon. I use it for pleasure walking. It is very sturdy and I think you could run behind it. It was designed in Norway, made in China and I LOVE it! It has two large wheels in front with two smaller ones in the back. It rolls easily over grass and dirt, although I usually walk on asphalt or pavement. I believe it would work for hiking also, although a Veloped Trionic would be ideal. For me it was a toss up between the the Access and Veloped, but for my needs the Access won (and it wasn't as expensive)! Sorry, I don't have any ideas for mountain climbing or surfing! My best to you... ;o)

As others have said, stay active!

I was always into weight training and have continued this since I was diagnosed (2008). I workout with dumbbells since this helps with balance as well as build muscle strength. I exercise mainly at home and occasionally go to the gym with a friend. I also use a stair climber for cardio.

I too used to surf :-) I bodyboard occasionally, but I am not as strong of a swimmer as I once was.

Those recumbent bikes look like fun. I'll have to look into these :-)

I use to be very active. Skateboarding and snowboarding mostly, but now I obviously cannot do either. So I have been hiking and biking a little in summer and snowshoeing and cross x'country skiing a little during the winter. But when I try to do something more cardio, I often feel dizzy and after, I get very tired...so I have more symptoms for the rest of the day. What should I do?

You might be pushing yourself too hard.

Our body is working a lot harder now to compensate for balance issues, etc. Start simple and work you way up. Use a stationary bike or a step machine. Start with something very easy and add a few minutes every week. This helped for me.

I still get dizzy sometimes, but it's much better than when I was first diagnosed.