Originally Posted by manybikes
I never imagined I would be able to do the things I do now. I was told by one of my Doctors that I would never ride a motorcycle again. Believe me, there were some low points in the beginning where I really thought I would never get better.
To other people I appear perfectly normal, my gait/walk appears normal. Last week I went in for an eye exam, on my form I stated that I was BVF. The eye Doctor made a point of walking behind me on the way to the examining room. When we arrived he told me he was observing me walk and was surprised that I appeared to walk normally down the hallway, he asked me how I did it. I replied "thousands of hours of practise".
Even my wife has told me that she often forgets that there is anything wrong with me....other than my personality ! LOL
In the beginning being in crowed busy spaces with a lot of people can be very challenging, this no longer bothers me much, nor does it bother when I get jostled or bumped. Stairs and hills do not bother me but I usually use the handrail when climbing or descending stairs...which even normal people often do. I now can stop half way up a staircase and chat with someone, this used to be very hard to do.
I don't get many off days anymore, when I do it the only thing I will notice is maybe a slight increase in oscillopsia but nothing that stops me from doing whatever activity I have planned. My off days get fewer every year.
Another thing I did to challenge myself was to take a part-time job at the local golf course as a greens cutter. They use the walk behind type machines where you have to cut straight lines, every shift I end up walking about 2 miles. At first this was very challenging, now it is easy...other than having to get up at 5:00 AM !!
I replaced slalom skiing with the Airchair (you will have to google it to understand), oddly enough normal people have more trouble riding the thing than I do.
You are right Uga, it can be a long frustrating process but you do get better and you do learn to adapt.
Just out of curiosity, what caused your BVF? how old are you? how long have you been BVF?
i am 38 years old and the cause of my vestibular loss is something they do not know, but think it is autoimmune or viral of some sort.
i lost my function about 3 months ago, i think looking back on it i was loosing it for about a year or two as i was just always feeling off and dizzy at times. i had several violent vertigo spells lasting a few hours and than it just went.
i would give anything not to be dizzy and have vertigo that was the absolute worst. i do not see how people with meniers cope with it. i have a friend who has meniers in both ears and he is thinking about killing off his vestibular function just to spare himself the horrific vertigo spells. his spell can last the whole day and it takes him about a week to recover. There are periods of time he cannot leave the house or even get out of bed.
you are rigth it is a crazy illness, but at least it wil not kill us. i tell myself it could be worse, there are kids dying in hospitals and such.
it is good to know that it does get better, and there is hope, i carry your story with me everyday knowing that you have a life and do pretty much what you want to do.
it will just take time and patience, that is hard for me to accept since i want it to be better in like two or three weeks and now realize it will be two or three years.
is it true that someone with no vestibular will never get dizzy again? i guess without the ears you cannot get dizzy or seasick!!
the hardest thing to do is make myself move and yet that is the very thing i need to do to retrain my brain. I guess when i am feeling horrible that is my brain and eyes fighting for balance!!
can you look up these days in the clouds to see airplanes and such or do you not do that, very very hard for me?
do you jog in public or just on the treadmill?
amazing that if someone were to see you today they would not know you have no balance function in either ear, the brain is an amazing thing.
do you still need to always be aware of movement even today or does the everyday movement come naturally to you in a sense that you do no need to pay attention to what you are doing?
Are you able to multitask, have many different things going on at the same time. can you talk and drive at the same time or do you need to concentrate at all times on one thing?
if you are sitting down or relaxing in bed do you feel normal? It seems the only time i feel halfway human is when i am sitting absolutely still.
As my dr. told me, anything physical is physical therapy.
Did the eye/head exercises help you at all?