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Harley Riders USA Forums » Harley Davidson General Forums » General HD Discussion » riding disability


General HD Discussion **NOTE** There is a section for Off Topic Discussion. This section is General discussion about Harley Davidson motorcycles, marketing strategies, experiences, or anything related. Before posting here, always check the other forums as they may be more appropriate.

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Old 01-03-2010, 01:29 PM Top   #1 (permalink)
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Default riding disability
Anyone here heard of BVF (bilateral vestibular failure), it means you have lost the balance function in both inner ears.
Anyone here riding with that condition? Anyone know anyone who rides with this condition?
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Old 01-03-2010, 01:33 PM Top   #2 (permalink)
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otherwise known as a saturday night!

welcome to the forum
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Old 01-03-2010, 01:37 PM Top   #3 (permalink)
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Never heard of it but it doesnt sound like something you would want to spend much time on two wheels with.

Are you saying you have this condition?
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Old 01-03-2010, 01:49 PM Top   #4 (permalink)
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Yes, about five years ago the balance function in both inner ears stopped, no known reason, which is often the case.
Very very rare condition.
I am back riding again but could probably write a book about the journey back.
I do not feel balance, I see it. The process of doing this is beyond description.
Basically had to relearn how to do everything, almost impossible to explain to anyone, including most doctors.
Anyway, I have been on many forums but as of yet have never met another individual who rides with this condition, other sufferers (of which there are few) can barely walk.
Just curious if I am a one man gang.
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Old 01-03-2010, 02:02 PM Top   #5 (permalink)
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wow,, thats nuts,, how long did it take you to learn to see the way to balance??
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Old 01-03-2010, 02:16 PM Top   #6 (permalink)
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That is nuts, I cant even imagine. Sounds like you are are that one man gang.

Not trying to be funny, but if you are standing and close your eyes, do you start to fall down?
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Old 01-03-2010, 02:20 PM Top   #7 (permalink)
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hell Mike i do that and i am ok
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Old 01-03-2010, 02:21 PM Top   #8 (permalink)
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Welcome aboard .

What part of Canada are ya from?
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Old 01-03-2010, 02:22 PM Top   #9 (permalink)
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hell Mike i do that and i am ok
You keep trying to convince everyone of that
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Old 01-03-2010, 02:23 PM Top   #10 (permalink)
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Well, not easy to explain.
Initially it is like being extremely drunk (although you are not), my balance skills were about the same as a very intoxicated person. I would stagger like a drunk when I walked down the street etc.
Initially I was unable to even drive a car. I know that sounds odd but, yes, your inner ear function is necessary to do that seemingly simple task.
Your inner ears work silently so you are totally unaware of what they actually do for you.
For example: the inner ear controls your eyes, the vestibular system (inner ears) sense g force and tell your eyes how to move as you turn your head. I was unable to keep my eyes still as they would bob around unable to fixate on stationary objects. While walking everything I looked at would be jumping around, if you were to run while filming with a hand held video camera..this is how the world looked to me.
Anyway....I had been riding for over 30 years and the Doctors told me my riding days were over for good.
I basically started by learning to ride a bicycle again. For several years a big tour on my bike was 2 or 3 miles. There were days where even a short ride around the block was pure terror..I am not exaggerating.
All in all it took several years to get back riding somewhat and another couple of years to start to feel confident enough to tackle freeways, windy days etc.
I would not wish it on anyone.
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Old 01-03-2010, 02:27 PM Top   #11 (permalink)
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fck,, thats amazing and huge kudos to you for getting back on bikes

welcome to this place,, hope ya stick around
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Old 01-03-2010, 02:33 PM Top   #12 (permalink)
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I can stand with my eyes closed and not fall down,however, I had to learn how to do this.
I take clues from other things like how my feet and legs feel etc.
At first I could not close my eyes otherwise I would fall down and not even realize it was happening.
I generally do not reveal my location as I am paranoid that some over zealous cop will have my license revoked.
Just a note on safety, it took me many years to retrain, I am very aware of my limitations.
Since this happened I have ridden about 40,000 miles.
There are people I ride with who are unaware there is anything wrong with me. Even my best friends cannot tell any difference anymore in my riding style.
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Old 01-03-2010, 02:40 PM Top   #13 (permalink)
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Never concidered just buying a trike .
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Old 01-03-2010, 02:45 PM Top   #14 (permalink)
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Yep, I did think about a trike.
My choice however would have been the Can-AM spyder (two wheels in front and one back)
To me it would have been my final admission of defeat which I could not bring myself to do. I used to be a real cocky shit and would make fun of trike riders...that attitude died a very quick death.
As I get older I probably will end up on something like that (barring any medical advances). I do however now respect those who ride trikes.
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Old 01-03-2010, 03:04 PM Top   #15 (permalink)
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Thanks for the warm welcome by the way.
I post on many other forums as well (but not about my disability)
Started riding when I was 12 and have owned 42 different bikes through the years.
I used to have a 84 FXRT but lost it in a divorce....aaargh (got to keep my guitar and the dog)
Right now I have a 83 BMW R100S, Ducati Multistrada, BMW F800GS and a 72 Yamaha R5C 350.
Don't normally have this many bikes at one time but will be thinning the herd come spring.
Looking at another HD sometime in the future.
I have searched the net looking for anyone else who has the same medical condition who rides motorcycles...so far no one.
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Old 01-03-2010, 03:13 PM Top   #16 (permalink)
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Much like everyone else, I know nothing about this disability.....sounds like a major pain in the ass....
But welcome to the Forum and stick around, there are alotta good folk and info here!
You should fit in nicely........
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Old 01-03-2010, 04:16 PM Top   #17 (permalink)
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Thanks
Since I am looking at buying a HD I intend to visit the site often for info.
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Old 01-03-2010, 05:13 PM Top   #18 (permalink)
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Absolutely amazing! As has been said, huge kudos for getting back on the scoot!

Welcome aboard and hope ya stick around!
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Old 01-03-2010, 05:32 PM Top   #19 (permalink)
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Old 01-03-2010, 08:23 PM Top   #20 (permalink)
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Also excellent work in ignoring "96 Wide Glide".

It usually takes new members several threads before they realise that clowns just a feckin wanker,, so well done & I am feeling good about your vote come April
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Old 01-03-2010, 08:50 PM Top   #21 (permalink)
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Old 01-03-2010, 10:57 PM Top   #22 (permalink)
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welcome many!! as impressed as i am by your ability to overcome your condition and be able to handle two wheels again, i am equally impressed by your harem of bikes
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Old 01-03-2010, 11:16 PM Top   #23 (permalink)
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You can never have too many. If only I had more space and more money.
As you can tell I like twins, for years I rode inline fours until I bought the FXRT, I liked the feel, sound and relative simplicity.
I know that this is a HD blog but the older BMW airhead boxers and even my Ducati also have that unique twin soul that a inline four cannot match.
Just starting to look at the used HD market and there are some good deals emerging out there.
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Old 01-04-2010, 10:01 AM Top   #24 (permalink)
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Yep, I did think about a trike.
My choice however would have been the Can-AM spyder (two wheels in front and one back)
To me it would have been my final admission of defeat which I could not bring myself to do. I used to be a real cocky shit and would make fun of trike riders...that attitude died a very quick death.
As I get older I probably will end up on something like that (barring any medical advances). I do however now respect those who ride trikes.
I converted my Ultra to a Trike this past November, not because I had to but just because I wanted to. I liked the looks of it and the comfort over the long hauls. I can honestly tell you it will do anything, and more, it could do on two wheels except fall over. I can take it on sand and gravel roads that would down a two wheel bagger in short order. With the 103 kit and cams it even runs stronger than before and will buzz through curves that scraped the floorboards when it was on two wheels. I took a lot of crap from buddies until we rode together.... but now they're curiously quiet as regards three wheels. By the way.......Welcome aboard!!!!
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Old 01-04-2010, 10:56 AM Top   #25 (permalink)
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Joker

You can never have too many. If only I had more space and more money.
As you can tell I like twins, for years I rode inline fours until I bought the FXRT, I liked the feel, sound and relative simplicity.
I know that this is a HD blog but the older BMW airhead boxers and even my Ducati also have that unique twin soul that a inline four cannot match.
Just starting to look at the used HD market and there are some good deals emerging out there.
i'm with ya on the twin v inline4 for sure. most i've had at a time was 3, currently only have 1
looking to add another in the next 90 days, and possibly start my own build come june (time/space allowing, and sk8 gets his limey ass over here).
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Old 01-04-2010, 11:12 AM Top   #26 (permalink)
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damn how fckin cool is that.. gonna hold ya to that Jokey poppet
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Old 01-04-2010, 11:26 AM Top   #27 (permalink)
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Grey Dog

Nice looking trike!
I have never ridden a trike which I will have to do when the chance arises.
I did ride the Can-Am Spyder at Arizona bike week last year.
I used to have a Aprilia RSV1000 Factory R which had the Rotax 60 degree V-Twin.
Beautiful motor with fantastic sound, I even had HD riders pull up beside me and tell me they loved the sound of that bike, anyway, the Spyder has the same motor only slightly detuned.
Riding the Spyder was a real hoot, very fast and very agile. I imagine the trikes are very similar.
I have followed trikes through the twisties and they are surprisingly fast. Looking forward to trying one out.
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Old 01-05-2010, 09:11 AM Top   #28 (permalink)
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Hey bikes, from the Ottawa region here, I will break my silence on the account that this is somehow near to my condition. I suffer from sporadic attacks Benign paroxysmal position vertigo, and both my wife and I get them. My wife has been having this condition from very mild to severe for about a year, and I get them here and there, though a quick and immediate session of EPLEY maneuvers usually eliminates the symptoms for me almost right away. None the less, I always feel like I am on the verge of an intense dizzy spell, and of course this is important, because it actually has happened while riding, including one occasion when it happened or started happening as i was on the 401 and going fast, so as you can imagine, only my extensive experience riding a bike allowed me to pull over to the side without dropping the bike at speed, though I have dropped it once in a parking lot when I experienced a dizzy spell.( Just lost my balance while sitting on it, so zero speed drop). I was able to continue after a break and very aggressive EPLEY maneuvers right on the side of the road...( SOme people actually pulled over to see what was going on .. lol )
Anyhow, I have had to learn to be careful, and always on the lookout for that initial "out of place" feeling, you prolly know what I mean.
Having said all that, the EPLEY treatment works for me, but not for my wife, and they are still trying to find out what her problem is.
Just as a foot note, and for your information, we both think that a combination of factors may have an impact on our condition, as we both have had at least one serious concussion in our past. Diet, alcohol consumption, and levels of physical activity ALL have an effect on how we feel, and we of course continue to research this, as we have had several different diagnostics from different sources.
Take a look at this, or Google it, as one of the side effects of this condition is actually mild or severe dizziness, and vestibular malfunction. Google Chronic Cerebrospinal Venous Insufficiency and read on it....

We are still learning, and personally, I admire your determination to continue riding, as I would and do the same...
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Old 01-05-2010, 09:38 AM Top   #29 (permalink)
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really Pepe....I didn't know that you and Barb had this condition.......
What is the EPLEY manuver?
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Old 01-05-2010, 09:56 AM Top   #30 (permalink)
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really Pepe....I didn't know that you and Barb had this condition.......
What is the EPLEY manuver?
Its a series of gradual movements done to reposition calcification in the inner ear canal. There are other series of movements that can be done, more aggressive, but for the most part, the Epley wil eliminate the dizziness for me. Side of the road like I mentioned i did the other series. Usually takes one or to complete series to get back to semi normal...about 8 to 10 minutes..
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