I figured something out this summer

Specific Illnesses & Conditions VM/MAV
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I figured something out this summer and I thought that some of you might be interested.

Just a quick note on the balance system to get everyone on par: It actually consists of three senses, your inner ear, muscle tension, and visual info.

Over the last few years, I have given myself the title “King of Falling.” Before I was diagnosed and getting at my worse, I was falling anywhere from a few times a day to several times an hour. Some of my falls I could call Tumarkin’s otolithic crisis, but most just didn’t match up. Since I was diagnosed and we found the right med for me, my falling days decreased to pretty much flare ups only.

OK, on to what I discovered this summer. As the regulars to this forum know, my ankle gave out on me and I had surgery on it. Before the surgery, I was trying to do everything that I could to tolerate the pain and avoid surgery. What I did notice was that during flare ups, all of my were accompanied by pain from my bad foot, becuase I was falling as I took a step on this foot.

OK, now that all of the preliminary data is given, here is what I figured out. I have trained my body to rely more on the muscle tension an visual info during flare ups. The problem is that I have already had part of my bad ankle/foot fused, (now even more fused,) so I was only getting partial muscle tension info needed for balance.

So when you throw in unreliable info from the ears, with only partial info from the foot, I don’t have much to work with as I take a step with my bad foot. So, now I know why I fall so much more than the average person with balance problems, just wish there was something that I could do about it. :!: Oh, and I figured out that canes aren’t much help with the fallling, sometimes I can catch myself when using a cane, other times, the cane ends up being stick poking up out of the ground waiting for me to land on it.

Brian

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Brian,

so you are working with two out of three systems out of wack, your vestibular is giving you misinformation, if at all, as well as your skeletal.

I always wondered about people who use canes and in what way they found it useful (i’m not questioning their use, they wouldn’t be using them if they were useful) but i know in my bad days, the more i kept moving, and less of my body was touching something solid, the less dizzy i felt. Even though I was bedridden for quite a while, lying in bed was often when i felt worst, because most of my body was touching something solid and my body could feel the waterbed. Adding a cane would be torture to me.

Thanks for your input Brian, it’s always well thought out. And i’m really glad those bad days are over for you. I’ll never forget reading your story when I first joined the forum. My heart went out to you. I still remember your description of what your day was like and it makes my heart ache a little still. Nobody should have to suffer so much.

Julie

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I forgot to mention that the reason that I am not getting the muscle tension info from my bad leg is a result of the two fusions that I have had done. The joint fusion prevent me from using muscles related to those joints, thereby preventing the typical muscle tension used in reference to balance.

Julie,

From feedback I have recieved over the years, most people find canes to be of use. I am just an oddity, and I think it is in part do to the fusions, when I go, I go until I hit the floor. BTW, I have been VERY lucky that the worse injury I have experienced in all of my falls is a minor case of road rash from falling on the driveway while wearing shorts.

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Lucky in terms of injury, yes. You are a very high functioning person for all the other bad luck.

Of course, as always, things could always be worse, like really getting kicked in the head by a horse :wink:

JJ

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:lol: