I’ve never seen anything about this but I’m 10 times worse outside than inside. These days, during coronavirus, I rarely go out but I did yesterday and noticed a distinct down-turn in my walking abilities which is only mild inside my home (or anyone’s home). I’ve put this down to all sorts of things but yesterday I thought it might be fresh air! Air moves around a bit outside (even when its not windy) and this might affect my balance but inside air is pretty still. Any comment welcome - including “Peter, you’re talking absolute nonsense. It’s not the air, it’s …”
I have to disagree a little with you. I just went through the worst five months of my life. For some reason I developed Sciatica in my right leg that went from my hip through my hamstring down to my ankle. Pain was a constant 11. Pain finished thank goodness.
Now to your post. Finally was able to get outdoors after some time and noticed that my balance and equilibrium were off. Also noticed that my eyesight was not right as well. I attribute that eyesight problem was because I went from an indoors lighting to the outdoors sun plus the heat of the temperature and the humidity was different. As you know, eyesight has a big effect on balance.
Time has gone by now and I’m getting outdoors more often now plus my eyes and body are getting more used to being outdoors. Balance seems to be improving. Also try to do some exercise as well. Hope this helps.
Interesting… I feel like I’m usually worse at walking inside, because I’m usually barefoot, and also there’s more stuff to bump into.
But I find that any kind of sensory input can be distracting, and make my walking worse. I always wear hoodies when it’s windy.
Something else to consider: do you wear glasses? Is your mask making them fog up? Like Chas521 says, anything that impairs vision will throw off your balance.
I wear only reading glasses for the most part. I do have vision glasses but I don’t really need them. My last eye exam put me at 20/25. No glasses during the daylight hours for driving but do use them at night. You’re right when I need to use the reading glasses, they do fog up with the mask. A real pain…
I’m a bit surprised by these comments. I was expecting people to say “Oh yes - definitely worse outside.” I do wear glasses and they do get steamed up in a mask but I was allowing for that. This is a long standing problem - long before this virus. I told my neurologist about it about 12 months ago and I’d already had this problem a long time. Yes, it is very bright at the moment, but it isn’t always bright so I don’t think it’s that (though it might be). So considering your replies, I think I can conclude that this particular problem is not ataxia. Anyone else?
Well, I find myself agreeing with you. At home, because I’m familiar with the layout and obstacles, I move around more freely and confidently. Anywhere I’m not familiar I’m much more hesitant and jerky, more prone to falls. Being outdoors immediately confuses me, I have no boundaries, unless I’m in the confines of a car, and of course then I’m sitting and relaxed. Being outdoors involves a lot of multitasking of the senses, and on the whole I find it pretty exhausting, and frustrating.
My particular ataxia means I have trouble coordinating when faced with glare, this seems to go hand in hand with the Vestibular symptoms I have. All Ataxias are definitely not the same when it comes to symptoms, and the degree to which they are experienced.
I’m also surprised because I was expecting someone to say they had trouble with bumpy, uneven ground like cobbled streets, grassy surfaces or broken pavement flags. Well I have that problem too but I’m also talking about smooth surfaces.
I can feel just as uneasy on a smooth surface because simply being on my feet causes disorientation.
I too like most of us have noticed a reduction in my mobility, particularly outside. I pretty much know why most of the time you have to overcome obstacles kerbs, people, inclines however small and so on. Also if you fall outside it hurts a lot more. Whereas at home you have a familiar layout and also things like doorframes (even subconsciously) for support.
I purchased a drive Walker to givexe me more confidence outdoors, which helps a lot. I try to do aerobic exercise with a rowing machine, because I’m aware that cardio is important as there isn’t much physically that I can do. I also do a plank exercise for a minute each day for core strength. Plus a few other exercises.
I was diagnosed in 2006, so I am quite advanced.
Anyway good luck to you all, and try to do whatever you can and above all stay safe.
FYI, here’s another exercise that you can do for your core. I do it at night while lying in bed. It’s leg lifts that really work your stomach muscles.
While lying flat on your back and keeping your legs straight, lift your feet about 8 to 10 inches and hold them there for as long as you can. I started out with 12 seconds and now I am up to 20 seconds. I do three setsof twenty seconds.
Hope it helps.
I have the same! Definitely worse now, even in the garden… I believe it’s worse walking outside, because you have not done that for so long. Do you exercise? If you don’t use it, you’ll use it! In the home everything is familiar and fairly even. Also Ataxia usually gets slowly worse and worse and you’re a few month further! And more insecure probably, not being used to walking outside anymore. Just keep doing it and exercise your muscles!
I am definitely worse outside. My walking takes more concentration and is just harder. Although the sun feels great! I wondered if it had to do with humidity or barometric pressure because I always walk better in drier climes. I live where it is humid in summer and cold and damp in winter. When it is 70 degrees and dry here I find it easier to walk, but that is rare.
I agree colder it is the harder it is to move. And also I agree you use it lose it I’m retired military veteran 2011 found out I have ataxia type3 I went from a cane to Walker to wheelchair. When trying to stand always have shoes on to prevent from slipping. And as far as out side verses inside if don’t use it you loose it. I also wear glasses now and it’s because of double vision and I too find it hard to be outside in the sun eyes seems to have gotten more sensitive so I tried transitioning lenses and they threw me off. Any way stay strong hope that this post helps.
I forgot I am an ataxian. I was sitting on tthe bench round mine and saw this beautiful butterfly, sitting enjoying the sun.TO grt a photo I’d need to creep up to take a snap.Suffice to say I got ready my camera ob the phone, only to realise I cannot walk without my walker, being on a grassy strech…My ataxia makes me very sensitive to angles, different surfaces. incline, down…Number of times have good breaks and using them, as well.exercise outdoors is important, walking is as well.Predominantly sitting so need movements, it is also good as I make myself to go out in all weathers.it impacts all people differently as there is a numerous types of ataxia.My biggest problem is judging distances, cannot drive, just as well…mirrors makes it all different, I perceive stuff differently, mirrors as if make it all different. cutting my hair at the back is a non starter.
I spoke about this with neurologist who recommended CBT [cognitive behavioural therapy] … this really helped with this problem and others. I still feel anxious and more unsteady in the garden but I know what to expect now and calm myself.
It’s all the things Beryl and others mention which cause the anxiety but understanding it helps quite a lot. stay safe and dont forget to smile xx Patsy
Thats exactly how i feel outside, I also believe inside my small apartment I feel more sure of myself in case I have an issue I know that there is something I can grab onto if I stumble*
Thank you lots and lots for the last few comments. I’m so relieved! I was totally bewildered why the first comments didn’t seem to agree with me. I was thinking I must have something else as well as ataxia or even if I’d been wrongly diagnosed as having ataxia at all. For me, it’s not lack of exercise, it’s not this use it, lose it thing. These muscles get plenty exercise, both even inside and outside and it’s not uneven surfaces because it’s just the same everywhere whether even or uneven. Like eleets39 though I have double vision. So I reckon it’s that for me. I like Ladybird’s story about butterflies. It so happens that my wife and I were visited by a ladybird and a butterfly (or a moth) in our house yesterday. I forget too that I have ataxia sometimes.
Peter (cross eyes)
This was recommended to me by a Neurologist when walking. I’ve tried it and I find it to help. Normal folks look forward with their head up. It was recommended that us Ataxians look downward when walking. Just sharing what helps me.
Patsy - really cool that you found CBT helpful! I’ve always wondered how much my problems stem from psychologically not trusting myself rather than physical stuff.
Where did you go to get it? Why did you tell the practitioner? Most therapists I’ve talked to are scared to treat some weird rare condition they’ve never heard of, lol.
I asked my Neurologist why and she said that I know exactly where to touch in my home and yard regaining balance and outside my home I am lost. If I can get to a shopping cart, I am graceful and safe. Let go of the handle and I fall! Take risks but be careful, another balancing act.