Originally Posted by uga
Manybikes: thanks again for the support,
i get the feeling i just need to keep moving even though it is difficult, that is the way the brain retrains itself?
do you ever have trouble bending over or carrying heavy objects or has your balance system adapted to those sorts of things as well?
After 5 years what is your biggest issue?
I recently went to the beach and it was very difficult walking in the sand, but i could tell my brain and eyes were fighting for balance and trying to keep me upright. I guess i should try to keep walking on all the uneven surfaces i can.
do the fast moving objects still cause you problems, are you able to watch sporting events on tv and things with a lot of back and forth/action.
What was your first year like when you were in the acute phase of the disease and the brain was just learing how to compensate. At what point/month into the disease did you feel you were making progress?
Manybikes: do you have complete loss of vestibular function. I have heard it is better to have a complete loss than to have uneven or bad function, do you agree with that?
Thank you my friend.
Bending over does not bother me anymore but carrying heavy objects can sometimes be a little more challenging. For example, if you are carrying a large box where you do not have a good visual on your orientation you will feel off balance. Don't forget, from now on your balance will be visual and by what your feet/body feels, you have lost the third balance contributor, your inner ears. Your visual clues become very important.
It used to bother me carrying a suitcase for example, not anymore. If I have to carry a box up or down stairs it is a little more difficult but not bad.
After five years I lead a very normal life, I wish I could do more things in darkness with confidence but this is something you learn to live with, just like someone who has lost the use of a limb (for example) and has adapted, you do most things you used to but are still always aware that you are different. I now do most of the things I enjoy with very few limitations.
Yes, moving objects will take some getting used to. Action movies on a big screen will take you sometime to get used to. When I first went bilateral watching anything on a large screen was very difficult. You will adapt to this, I now enjoy going to the movies. Even scrolling down on my computer was hard at first, not now.
The first year for me was very bad Ugo, very bad. As I mentioned, I have been where you are now and it is a hard place to be. There is generally no magic moment but if I had to guess I would say that going into the second year things really started improving rapidly. This is not to say that you will adapt on the same time lines as me, you may progress more rapidly.
It's like 3 steps forward and 2 steps back type of process in the initial stages of adaptation, then it becomes 3 steps forward and only 1 back, then it just keeps going forward. Does this make sense to you? let me know if it doesn't.
Don't get discouraged, you may not realize it but you are making progress right now but it is hard for you to detect. Several months from now you will look back and realize the progress. You will have set backs but this is normal.
I have no detectable inner ear function in either side. I went to the House Ear Clinic in Los Angeles for testing and they told me my results were as bad as they had ever seen. Did you know that our condition is also known as Dandy's Syndrome? yep, it does have an actual name.
One of the things that seemed to help me a bit was hand writing. I used to do this occasionally. Sit down with a piece of paper and start writing, write whatever you want, I think the concentration and eye hand co-ordination helps. Like I say, try it, let me know if you notice any difference afterwards.
Also, if you go to the gym try one of those vibration therapy/exercise machines.
At this point are you able to walk fairly well in good lighting?
Are you able to work?