Originally Posted by uga
thanks a million, your story is inspiring to know there is hope. i just want to be able to sail, flyfish and enjoy my water sports like you do.
after all these years, has your brain fog, mild confusion ect.......improved. I have been told once the brain realizes it can no longer count on the ears for balance, it will eventually clear up.
Is there anything you used to be able to do that you cannot do now. i know there will be limitations with things in the dark and uneven surfaces but all in all how do you function with 100% being a normal person. My dr. told me i would eventually get to around 80-90% normal with limitations in the dark and uneven surfaces?
After all these years do you still get the oscillopsia or has your brain compensated and now it does not even realize you have it. I have been told it will be a non issue as the months and years pass by, i will still have it, but the brain ignores it so to speak.....
I think my biggest problem is patience, i want it all to be ok in a few months and now realize it will take years.
When you were first diagnosed how long before you could drive confidently, could you lift things without falling over, how was reading ect......
You are very much appreciated, i want to thank you for responding and taking time out of your busy day to offer support and encouragement.
If i can get back to 90% over time i will be happy, i just want to fly fish again and go for a sail one day. Do you swim? My dr. told me to do anything i want, but be careful, just no scuba diving or underwater swimming, i now wear a lifejacket when in the lake just as precaution.
Yes, the brain fog does go away. If I remember it took about a year and a half before it really cleared up for me. You will find that people will think you seem a little spaced out or something, this is due to the fact that you often have to concentrate on other things (like balance etc) when you are in a social setting so it gives others the impression you are not really paying attention to them. You definately won't be able to drink as much as you used to !
The only things I can no longer do is Slalom waterski, this is due to the fact that you are temporarily under water when doing a single ski deep water start and are unable to balance properly....I was getting a little too old for slalom anyway. Riding at night on my motorcycle is also something I only do if absolutely necessary, I can do it, but I consider it an unnecessary risk.
I do not have much trouble walking in the dark but walking in the dark across a field is a little trickier. I was recently at a outdoor party with a bon fire and when I walked away from the fire into the dark I wobbled a bit..of course..ahem..I did have a few beers!
It took about 2 years to be able to drive confidently in all conditions including night driving. Freeways and windy or rough road conditions seemed to be the hardest to overcome. Driving is no longer an issue now although I am a more cautious driver than what I used to be.
Climbing step ladders also takes a bit of practise.
I spent a fair amount of time in the gym working out on the treadmill. It is an excellent way to regain/re-learn balance skills. I also spent a lot of time on a bicycle re-learning how to ride two wheels (always wear a helmet and protective gear). Before BVF I used to do 800-1000 mile days on my motorcycle, after BVF for the first year or so a mere trip around the block was sheer terror... I'm not kidding. I now ride to work everyday and tour with very little problem.
Driving my ski boat also felt a little strange for the first year or so but I adapted quickly to that...you never have to worry about being sea sick ever again! Swimming never did bother me much, I suppose it depends on how confident you were in the water prior to BVF. I do get a quick shot of being disoriented if I dive in a pool but it really doesn't bother me much. When you think about it even normal people rely on visual clues when under water. When you scuba dive and are in murky water you have to watch your bubbles to know your orientation so your inner ears do not seem to be a factor in water. If you are a good swimmer, go to a pool and try a few lengths (make sure someone is around just in case you do have trouble)
You are lucky, sounds like you have a good doctor. Most of the doctors I went to would just shrug and say " I don't know" when I asked these types of questions.
I would say that "Yes" I am about 90% back to doing everything I used to enjoy.
Fly fishing may take a bit of practise because you are in moving water and often on a slippery uneven surface but it is definately doable. Make sure you always wear a life vest just in case.
Don't hesitate to ask questions Uga, I would be glad to help in any way.