I identify with a lot of what is being said here. A walking stick or anything like that would not help me because I lurch around in such a way that I would never know where to put the stick. I find it interesting that Mommaroo has mentioned grassy surfaces as being a problem. This is true for me too and I find it most peculiar. On a flat surface, I lurch around, bump into lamp posts, and fall of the kerb (I live in UK, some call it a sidewalk). All this is reasonably understandable and I have learnt to cope with it. But when I try to walk on a grassy surface, my legs go like jelly and I can't imagine why that should be.
The cold is definitely my enemy, as I tend to tense up, which makes the symptoms worse. I have to concentrate on being as relaxed as possible.
I'm terrified of falling, and steps (especially going down) and unlevel surfaces are especially difficult with the poor balance. I have fallen and have no broken bones yet, but I'm afraid my luck will run out. I have learned some strategies. And I use a cane right now whenever I leave home. There are times when I wonder if I should move on to a walker for safety.
Sharon
You seem to be at a similar stage to me. I never never never use stairs unless there's handrail or similar. I can't really use a stick either as then I may not be able to use the handrail ! Near where I live there is a very unlevel surface. However it was not too bad until the local council got their dirty hands on it. They spent thousands to make it look nice by getting it paved with fancy coloured bricks. They also introduced some steps but as the area was not level, the steps are not even and you can't easily tell if there is a step or not. They did this even though, there is a blind club nearby. I find it difficult with ataxia but at least I can see. Blind people must find it impossible.
Peter
Always concerned about falling, even in my own home. Stairs with good handrails I can take, but pretty slowly. Uneven ground freaks me out.
I managed for a while with 2 handrails on the stairsā¦we could have put in a stair lift but eventually decided to move to a bungalow for practicality.
I totally agree with you about āuneven surface underfootāā¦it makes me disorientated and I can lose control over balance.
Here..we have solid floors apart from bedroomsā¦I regret having carpet in my bedroom ..I āsense the difference underfootā.
Stepsā¦are a problem for meā¦not only the issue of lifting my legs. I feel as though āIām stepping out into spaceā..even using a handrail or my husbandās arm for supportā¦
Actually..just being outdoors can be disorientatingā¦thereās nothing solid to āfix onto visuallyā..
So much of what you describe resonates.
When Iāve been sitting a while and stand up, I sometimes have that very heavy leg symptom. I have concentrate so hard, just to lift my foot from the floor!
Like you, I am happier indoors these days. Even tho I do still fall at home, it doesnāt seem as risky.
Thanks so much for sharing your journey, Beryl.
1 Like
Yes and no! I just try to pay attention where I am walking so I donāt fall. I have fallen many times because I donāt always pay attention 