Originally Posted by manybikes
Your story is very similar to mine. I think it may have taken a year or more to lose my function, the trouble is I had no idea that that was my problem. I was feeling off for quite some time and I would tell my Doctor that something was wrong, he would always tell me it was because I was getting older. I started to get short episodes of vertigo and they thought I had BPPV....not!! Anyway, both sides cratered and that's when they discovered I had suffered BVF....a little late at that point.
You are right Uga, there are others who suffer much more than we do.
You have to compare yourself with someone who has lost a leg or arm, what we have can be just as debilitating and just as hard to adapt to. The frustrating difference is the rarity of our condition and the fact that is is invisible. There are a multitude of support groups for all kinds of conditions/afflictions but as you are now finding out, trying to find someone with your handicap (or condition) that you can relate to is not so easy. If someone sees that you have a damaged or missing limb they understand and even strangers will try to help....not so for us (this is the invisible part). When I used to stagger on the street people would just regard me as a useless drunk.
I even contacted every disabled motorcycle organization I could find. There were guys riding motorcycles with a missing arm, leg, foot,eye...you name it, but no one had a clue what BVL was and had never heard of anyone riding with that condition. There was even the odd time where I would explain my condition to people and they would actually laugh...I'm serious!! People simply cannot relate to what is happening to you Uga, sad but true.
Anyway....enough feeling sorry for ourselves ! lets get on with it!
Yes, I can jog in public, a small amount of oscillopsia but no big deal. I still do most of my jogging on the treadmill only because I use it as a warm up for weight lifting etc.
Yes, your Doctor is totally correct, just everyday living tasks and doing things is therapy that helps you adapt that much faster. The bottom line here is "use it or lose it". Going out with friends, walking to the store etc. all of these activities will be absolutely frustrating, exhausting and will literally bring you to tears. The sooner you get going into regular type activity the better off you will be. And yes, the head exercises are very good, they help retrain your eyes. I still do them, not very often anymore but I still do.
Yes, I know exactly what you mean about looking at Airplanes when they fly over. I have been in aviation most of my life and when an airplane flies over I always look. At first this was no easy task, I can now stand outside on a windy day and stare into the sky to look at clouds and airplanes....(try explaining that last statement to a normal person!!)
Yes, movement now comes natural where i no longer really have to think about what I am doing. However, if the task is in the dark or requires a great deal of balance (like walking on a plank) then, yes, I do have to think about it.
Yes, I can now multi-task, when I first started driving I could not listen to the radio, chat with anyone in the vehicle and could barely turn my head for a shoulder check. I could also not drive on a windy day because the sway of the vehicle would throw me off.
None of the above is a problem for me anymore, I now drive confidently while talking, listening to music...all the old bad habits I used to have !
Yes, laying in bed was initially the only time that I would feel alright. Every morning I would wake up and pray that somehow I would be normal when I took those first few steps. The process was slow Uga, but I can now get out of bed and very rarely do I feel off.
You are much younger than I was when I went BVL so I believe your youth will put you at a great advantage for adapting.
Feel free to ask as many questions as you like Uga, I will try to help in anyway I can.
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.