When I am in my home I do very well with my balance walking, I do not hold on to anything exept when I use the stairs, but when I am outside my dizziness and balance are crazy I grab for my husbands arm and will not walk a foot. Is it me or what? What can I do..................
If you have any type of Ataxia this can be the main 1st symptom..A doctor will need to examine you,I would say ASAP. Yes all of us had those symptoms and even worse now..Still,don't be alarmed !!Good trusted advice is what you'll need and I hope that you could have a treatable cause..I'm sure others will have more to add..
Take care...Ozzy
It is not you. I used to be ok in the house and now use furniture for balance. Outside I have to use a stick or I lack the confidence to walk. I prefer a stick to my wife for steadiness. Independence I guess. My physio proved to me it was a confidence thing because at one time I would not go out with a stick but after a few sessions of walking I could walk the dog.
All that being said Ataxia is so individual what worked for me may not for you. Good luck
You may have a problem or hopefully you may not, you would be better to seek medical advice. You may benefit from some kind of walking stick,(you can always ditch it at a later time) Preventing any risk of a fall would seem to me as a priority and to prevent further bruises to your husbands arm!!!!.You are not alone if you are found to have a problem.. No need to panic even if you want to. Have good nosey around our site lots of help is available,
Take care Peter Ashbourne England
Exactly the same thing happens to me. When I am inside I am confident. I do not hold on to anything unless I am either descending or ascending the stairs. If I am inside, I feel safe. I always assumed it was because we have lived here a very long time and I know the house well.
When I am outdoors, things are so different. Nowhere is safe, I even trip on flat surfaces. Its horrible and it's scary.
my neuro physiotherapist did explain this to me but not sure I can remember it!! Something to do with the part of the brain that takes over when the cerebellum has shrunk.
What we do indoors is almost on overdrive but outdoors we have to engage brain.
Im also ok in my house but when I go outside its a different story… I have to use my cain. I have fallin many times right outside my door, a few leading to an e.r. visit but very few falls in my home!
Hi I know just what you mean. I can move around the house thinking I am having a good day but as soon as I go outside I feel so dizzy I just want to get back home.I dread having to go out but don’t know what to do about it.
I would appreciate any suggestions
Thanks !
Best wishes to you.
Anna
Hello,
I know what you mean ------- outside, well there are the hard surfaces I may “kiss”, the frustration and humiliation that arises when seen by others, compounding my fear and imbalance as a result.
If you have fear before you go out, dont venture out! If its a rare opportunity when you feel good … great!!!
Some victims are programmed by the manta …“outside to exercise at all costs” pressure.
You will improve as your body will naturally coordinate with your feeling good … your MIND. Believe me!!
It is just confidence or lack of. Going out you are probably thinking that someone might knock you down. As Ozzy stated it is Ataxia. Much luck to you.
Hiya! I have the same problem, touch walk in the house (familiar place) don’t go out alone now Ozzy’s right, its Ataxia xx
I used to not mind so much going out. I thought I could hide the symptoms. I used to think, when people look at me, they see a normal woman and do not know that anything is wrong but now I know that they can see my unsteadyness, my wide gait and my shuffling walk and I am scared and embarrassed. I wish I could just think "this is me and if you don't like it, tough" but I can't yet. My symptoms have not been really bad for long and I need time to accept that I have Ataxia.
I'm the same way. I've been confirmed with SCA6 via a Neurologist. Outside, I use a rolling walker or my mobility scooter. Inside, I don't use any means for support. This is because we are comfortable with our surroundings. Inside, we know that the terrain is flat. There are no peaks and valleys. Outside, there are always peaks and valleys, We have to stay horizontal. On the inside, I will say that I do bounce off the walls on occasions.
Just the other day, I drove to the store on business. I normally park close to a shopping cart. On this particular day, I couldn't park close to the cart so I had to park relatively far from the cart. So I got out of my truck, and started to walk to the shopping cart and found that it was a long way to walk without a walking aid. I knew that I wasn't going to make it so I walked back to my truck and got my walker. Anyone that saw me probably thought I was drunk.
The point being, we need to be aware of our surroundings at all times.
Caitrona, I have the same mind set as you. In recent months, I'm finally coming to grips being handicapped. Before I became handicapped, I always walked with a little weave. I just thought I was a little strange and when my handicapped became reality, It was always hard for me to accept being handicapped. Well, it is what it is. Either I continue to make people think I was drunk all the time or publicize my character with using walking aids.
I also discovered that some people don't know how to act around someone who is handicapped. This goes for people who is leaders of authority and even friends. So they ignore you or treat you differently than when I was normal.
My husband has ataxia and I saw this same thing in the early stages. I concluded that there was more unknown stimuli while outside. When you're home you know what different things sound like and look like so you don't need to use your thought processes to identify what is going on and walk at the same time. While outside, you hear a dog bark and wonder where it is, what it looks like and if it's going to come and bite you and you're trying to walk and process all the other stuff, too. The more familiar you are with where you walk will increase your confidence. You will know the little barking dog lives at the yellow house on the corner and he can't get you because he's behind the fence which will then free up your brain. Too much stuff going on makes your brain work too hard. Be careful but if you stop going out, you won't be able to go out later on.
Thanks guys! It's very cold here, but I am ging to just go out when it warms up!
Caitriona said:
exactly the same for me, word for wordExactly the same thing happens to me. When I am inside I am confident. I do not hold on to anything unless I am either descending or ascending the stairs. If I am inside, I feel safe. I always assumed it was because we have lived here a very long time and I know the house well.
When I am outdoors, things are so different. Nowhere is safe, I even trip on flat surfaces. Its horrible and it's scary.
I think it has a lot to do with other things moving like traffic or the wind blowing trees. I have to focus on the ground and have to think about EVERY single step I take, concentration is everything. I cant just turn my head to look to cross the road, I have to stop and turn my body. Otherwise my balance completely goes and I fall. I don’t go out at all on my own as it is so exhausting, downward streets are a nightmare and walking in the dark is a definite no no
For me I know that nervousness or self-conciousness makes ataxia much worse. I have to try to relax myself when I will be walking in public. When available, I rely on husbands arm.
Hi,
As others wrote, you are not alone in feeling this way. If you have not consulted with a doctor about these issues, maybe you should do so soon. We are all different and are affected to different levels - both physically and mentally. On LWA, we may not be doctors but we can, at least, and do offer support to each other.
I have 'undiagnosed' ataxia around my body and a specific diagnosis of gait ataxia. As implied, my balance and coordinated walking are affected. I started using handrails, walking sticks, a mobility scooter and other mobility aids and over time have had to adapt to these things. More recently I have had to get a wheelchair for trips away from home. I find it hard to use a 'walker' as they seem to run away from me and this is dangerous.
At home, I am much more in my 'comfort zone' as I know the building really well and we try to keep all walkways clear and accessible. Even in the garden, where I do need to use walking aids, I am still somewhere near comfortable in terms of getting about. The trouble starts when I pass my front gate. I cannot walk far physically as is and being out in the open does not help. Away from home there are many concerns other than my physical ability or mental comfort. Wide pavements with no handrails or other support, inclinations, declinations, uneven paths, slippery surfaces (such as when it rains), the wind, traffic, anything that disrupts concentrating on walking, other people deliberately or accidentally blocking the route or knocking into me and the fear of going out are all very real problems.
I've been accussed of being drunk because of how I walk (or used to with little or no aid), I get abuse for using my mobility scooter - most recently threats of violence against me when a guy appearing to be in his mid twenties and his little 'gang' accused my of being a benefits cheat and "At thirty year old you should not be using the scooter ...". It has been many years since I was thirty and the 'gang' refused to believe that ''there is anything wrong with" me.
I will not lie to anyone and say that life with ataxia is easy - it most certainly is not. That said, there are things we can do to help such as using mobility aids, changing how we do things, slowing down if needed, accepting help and support when offered and there is one very important other thing! Though it can be difficult at times, sometimes more than other, one of the most important things we can all do is to not let fear overwhelm us. Wether it is the fear of what others may think of us, the very real fear of falling and being injured, the fear of going to see a doctor, the fear of change in regard to health and other matters, the fear for what the future may hold or any other fear associated with a long term health problem such as ataxia we all should try our best to keep that fear in check - it will likely never go away but it can be controlled.
I hope you get all the support you need and can stay strong.
Kindest regards,
Michael.
Hi Majorie
I have EA2 and I also am fine 85% of the time walking in the house. But go outside an I have the same problems you do. It's not you and you are not alone with your symptoms. Know exactly how you feel. What type of ataxia do you have? I do get very imbalanced if get involved in the kitchen. Like cooking Thanksgiving dinner. I love to cook but now have to take breaks and sit for a while to get my sea legs back. Not fun but I keep going.