Walking?: I am still walking. Does ataxia progress... - Ataxia UK

Ataxia UK
3,311 members3,559 posts

Walking?

BobR47
BobR47

I am still walking. Does ataxia progress to where that might not be possible?

I have not fallen but feel on the verge constantly. Stairs are scary.

31 Replies
oldestnewest

I was walking 12 years ago then went from one stick to two and then various walkers. We are all so different but exercise helps. (and I often fall down)

BobR47
BobR47
in reply to crisal

Thanks

In my case it did,walking became impossible,I was about 50 I am now 62

Stay safe 🌈

BobR47
BobR47
in reply to murcia

Thanks

Different types of Ataxia have different outcomes. I know someone who has had it for 35 years and is still walking albeit with a walker. The important thing is to keep safe. I found a stick not to be stable enough and now use a three wheeled walker outside.

In January I had an appointment with Professor Giunti at the London specialist Ataxia centre and she strongly emphasised the importance of exercise. She said that some gentle Pilates, cycling (I have a reclining static bike), and walking can slower the progression and sometimes plateau it.

Good luck

Barbara

BobR47
BobR47
in reply to Libra7

Thank you for sharing. Not always good news but helps to know others have experienced this.

🤔 It’s highly likely stiffness will set in at some point, keep ‘on the move’ as much as possible. Stiffness leads to jerkiness, which often leads to falls.

BobR47
BobR47
in reply to wobblybee

Thanks wobblybee, I think I’m about there. Legs are very rigid and stiff and movements becoming jerky. Very afraid of falling, especially with this damn virus. Last place I want to go is a hospital emergency room.

I used crutch now walker, do fall down regularly but I walk with walker and on good days with 2 rest periods do 3000 steps. Please carry on walking it's the best exercise.

BobR47
BobR47
in reply to Amynah

I’m doing about 7000 steps per day divided between a treadmill and outdoor walks.

wobblybee
wobblybee
in reply to BobR47

🙂 One day last week I broke my personal record, 5000+ steps, and that was on a walk outside. But I really can’t see that happening again 😉 I have a treadmill, but for the moment it’s in storage because we’ve moved house.

Stiffness and jerkiness have become the norm for me too, once I get going joints and muscles loosen up, but when I first stand 🙈 And, as you say, the last place I want to be right now is in an emergency room.

Well done, and keep up the good work👍

I find Pilates INCREDIBLY, INCREDIBLY helpful both for my balance and for my strength. It’s also helped me be more adventurous, while staying careful!

Never done that.

Hi Bob, keep walking! You’re more likely to keep it if you use it. Pilates and walking brilliant, because strong postural muscles and quads make you less likely to fall. You could try Nordic walking poles to give you confidence when walking. I love mine, I can walk without them but I walk much better and faster with, and I can do the kind of terrain I wouldn’t manage without. X

Hi Bob, I was diagnosed almost 9 years ago and have always walked 2 x daily with my dog and done pilates and yoga but during this lockdown as his exercise my husband has been taking the dog once a day and I have really noticed how much stiffer I am and finding walking not so good so would recommend you walk as much as you can and do pilates for your core- use it or loose it seems to be so true - my Ataxia support group always comment on how good my walking is

BobR47
BobR47
in reply to Zigalig

I’m walking every day, 2-5 miles, combination of outdoors and treadmill. Some days better than others.

Hey Bob, I think I have the same situation like you. Two year back i could run and dance in weddings. Now, I'm bound to my bed I walk till my dining table and then go back, stiffness is coming steadily. Eventually, we r going to be on wheelchair so why not now..

Same here. Wasn’t that long ago I could run. Not now. Still has not completely sunk in.

Don’t think I want to finish up in a wheelchair.

auntiesally
auntiesally
in reply to BobR47

None of us do, help yourself, do what you can, but if you need to use a wheelchair, use it

Keep the legs moving, Ataxia loves to sit. Iwas able to climb ladders walk and even jog 5 years ago, Ihave been using hiking sticks for the last 3 or 4 years back and now looking to Buy a Mobility Scooter! Keep on moving :-))

BobR47
BobR47
in reply to stedman

Thanks stedman. I'm a bit concerned about having to go to a wheelchair or scooter. Haven't got my head around that possibility yet. Not sure how to think about that. Depressing thought!

Hello BobR47

Yes, very depressing, when the time comes you will be grateful for the mobility, freedom, and independence it gives you especially if you are a furniture walker! That is how I now see it, I have been using a Ride-on mower with success, except for the noise of the engine. Look up Mobility Scooters, electric, and start saving for a high-end model that reflects your character and style. Good luck and don't worry;-)

BobR47
BobR47
in reply to stedman

Hard to not worry. Hard to adjust to this new reality.

Last year I ended up chair bound after 16 years of slowly getting worse.

I am now able to walk after being put on a German drug after visiting Sheffield Ataxia Center.

Sounds promising. What is the German drug’s name?

KiwiBob
KiwiBob
in reply to BobR47

Flunarizin-CT 5 mg Hartkapsein, Sheffield Ataxia Centre sends the pills up in the post as you cannot get them in Scotland.

auntiesally
auntiesally
in reply to KiwiBob

How do they help?

BobR47
BobR47
in reply to auntiesally

Yes, I’d like to know also. Better walking, less stiffness?

KiwiBob
KiwiBob
in reply to BobR47

The medication is helping with my balance and coordination. I can now do simple things like washing the dishes and put them away without smashing them. Walking most of the time without having to hold on to someone. Carry a cup of coffee most of the time. I am still finding typing a problem.

BobR47
BobR47
in reply to KiwiBob

Thanks for the info. My neurologist is checking it out after I showed her your post. I can currently do the things you referenced, although I struggle with balance while walking.

You may also like...