What causes problems with balance and walking,especially on stairs?

[drz]

I notice many others have commented on trouble walking,especially on stairs. I know the Wegener's damaged on inner ear on one side that affected my balance. I was told that much of initial problem was from deconditioning from prolonged bed rest during treatment but as legs have got stronger with physical therapy and more use, no improvement in balance has occurred. I believe the shortness of breath from walkiing a hundred feet or more is due to kidney damage,l lung damage, and side effects of meds taken for treatment.

Are there other factors that contribute to this problem?

One doctor suggested I will always walk like a drunken sailor and need a cane for going any distance.

Has anyone regained ability to walk "normal" again?

[Sangye]

drz, you need to go to Vestibular PT. It can help tons with this. They can evaluate what's causing the balance problem and give you exercises that retrain the brain to cope with it. Makes a HUGE difference. It won't recover on its own. It might not be possible to get it back to normal (and probably isn't possible if inner ear damage was done) but there's usually a lot they can do to improve it.

[Hopeful]

Hi drz. Balance problems, in my case, seems to be mostly related to the inner ear. There is constant fluid in the middle ear which resolves with a grommet. When the ear is dried out the balance improves. Unfortunately doctors here only like to put temporary grommets in first, but only 3 times before they put in a "permanent" one. Also unfortunately a permanent one cannot always be put in when you want it to. It depends on the amount of pressure in the ear causing the drum to bow out or in. So the new normal is using handrails on stairs and not turning too quickly. Curbs are also a bit scary but probably because one has to turn the head to look for traffic.

Deconditioning is probably a part of the shortness of breath, but it may also be medication. I was on Azathioprine and was quite breathless doing my 1km walk to the city to catch my bus home after work. My immunologist switched me to 20mg methotrexate and once it started to build up in my system my breathlessness and leg cramps mostly disappeared. Mostly. Scarring of the lungs is responsible for the remainder. That said, I still push the limits because I know the body has great compensatory/regenerative abilities. And yes, I still walk like Frankenstein's monster when I'm tired. So, like Jack has said in the past, you get used to the new normal. But try to make it the best new normal you can! :thumbsup:

[elephant]

I love your attitude...it is so positive!

[Doug]

Frankly, even small rises or drops in elevation pose a threat. I've kissed the dirt any number of times because I missed a small change. With inner ear issues, too, that just amplifies the possibility for falls. With me, it's more an issue of peripheral neuropathy.

[drz]

Thanks for the posts. I got a chuckle out of a couple of them. I have done several weeks of balance work during my rehab learning to walk for fourth time. When I started i couldn't get out of bed by myself for fear of falling over. Now I can walk like a drunken sailor for a hundred yards on a good day. I don't fall over, (at least not immediately) when I close my eyes while standing. I had significant neuropathy before Wegener's and had to learn to walk like a frogman to keep from tripping so I had some walking problems before. The inner ear damage and deconditioning have made things worse but I feel I get by OK with help of cane. The last ENT doctor didn't think much could be done for balance or hearing and didn't comment on a any apparent fluid but did say it related to pressure that changes when I yawn.


I did a couple classes in fall prevention and passed the assessment tests with low risk of falling as long as i shuffle with wide stance and take my time. I just look funny walking that way but with a cane it doesn't look too bad and no one seems to notice much then since that is why I have a cane, right. I suppose for Halloween Frankenstein is a good choice for us, cause we wont make it as a ballet dancer, will we?

[Sangye]

drz, balance work in PT is not necessarily Vestibular PT. There are specific exercises that re-train the brain to cope with motion. Did you do anything like look at an object and shake your head back and forth for two minutes?

[jola57]

At the beginning after diagnosis I used to "catch rabbits" a lot especially after the dropped foot. It was my own stupidity because i did not want to own up and use a cane. When i did use it all was right. I too get vertigo when walking up or down the stairs, I always, always (hear that Jack lol) hold onto the rail and/or the wall. I had one too many misses. I was told that my dizzy spells were due to the meds and the bad ears. Also some of the meds change the pressure in the blood vessels, sort of like hanging upside down and then rapidly standing right side up. So any rapid movement such as turning or an up/down motion can recreate the same feeling.

[pberggren1]

At the beginning after diagnosis I used to "catch rabbits" a lot especially after the dropped foot. It was my own stupidity because i did not want to own up and use a cane. When i did use it all was right. I too get vertigo when walking up or down the stairs, I always, always (hear that Jack lol) hold onto the rail and/or the wall. I had one too many misses. I was told that my dizzy spells were due to the meds and the bad ears. Also some of the meds change the pressure in the blood vessels, sort of like hanging upside down and then rapidly standing right side up. So any rapid movement such as turning or an up/down motion can recreate the same feeling.

Catch rabbits? What's that?

[Jack]

I always, always (hear that Jack lol) hold onto the rail and/or the wall.
You sound like my wife! :rolleyes1:

[Doug]

"Catch rabbits"? Jolanta, I'm like Phil on this one. Is that anything like "kiss the tarmac", "plow the field", fall flat on one's face? It's a cute image for falling, if "cute" is the right word!

[Jack]

I think it means to trip or stumble.

There is a similar expression "Catch a Crab" applied to rowing. It is when you don't put the blade deep enough into the water and it skips to the surface and lands you on your back!

Isn't English a wonderful language? And they say that Chinese is difficult to learn. :)

[Hammy8241]

Just back from a short break in Itay with my 'better half'. First time since diagnosis we have spent a lot of time together. Half way through the week Sue noticed that evey time i went through a door, I always hit one side or the other. (I was sober):sad: Guess i'll mention it to the ENT next appointment.

[elephant]

Hammy I do this daily...secondary to my eye's adjusting. I have bruises all over my body...just showed them to my hubby last night. I feel your pain!

[Sangye]

That can happen if your spine is out of alignment. One way of demonstrating this to patients is to have them stand on 2 scales simultaneously (one foot on each). They have to be the same type of scale. You'll often see a 10-15 lb difference in the weight on each side. After adjusting them, the difference is dramatically lower, if not negligible. People with scoliosis chronically have different weight on each side and note that they're "clumsy" and run into door frames.

Of course, balance issues can also be the cause, but they aren't always related to inner ear problems.

[elephant]

I will get this check out after I get my right eye done. I run into door frames 5 times a week. :(

[marta]

That can happen if your spine is out of alignment. One way of demonstrating this to patients is to have them stand on 2 scales simultaneously (one foot on each). They have to be the same type of scale. You'll often see a 10-15 lb difference in the weight on each side. After adjusting them, the difference is dramatically lower, if not negligible. People with scoliosis chronically have different weight on each side and note that they're "clumsy" and run into door frames.

Of course, balance issues can also be the cause, but they aren't always related to inner ear problems.

You can also buy yourself the Wii Fit as it's really good for that kind of thing. It does a test where it sees where you are balanced on your feet and then you can do a bunch of different exercises to fix the problem of being too much on one side - biofeedback is great if for nothing more than to just get more self awareness. I don't personally have one, but my sister next door does and I borrow it from time to time.

Welcome back Hammy. Looking forward to some good stories.

Elephant, your comment made me think of something stupid/hillarious that happened to me last week, where I am now sportin' a pair of matching grapefruit size bruises on each hip. My daughter and I were at the playground, and she wanted to play superheros - little does she know I already belong to a group of superheros - and I thought what could possibly go wrong. Famous last words. I went to jump through a parallel set of vertical bars while holding on to the top horizontal bar and at the very last nanonsecond realized that the vertical bars were far narrower than I originally thought. Narrower than my ever expanding hips anyway. Aha!!!! There I go in a heap on the ground ready to vomit from the pain with a three year old looking over me saying 'come on mommy lets play' while I was trying to avoid puking. My car was about 1km away and I was trying to imagine how I would send Hana for help to get us home, but luckily the pain subsided, the ego, although sligthly bruised, came back and all was good in the end. I couldn't sleep on either side for a few days, and have some great bruises and a good story out of the whole deal. And I promise no more Parkour Games in the playground.

[elephant]

Least you were trying to have fun while getting those bruises! I still do stuff like that, just wrestled with my 9 yr old son, and had to tell him only 5 minutes..."I am too old for this!"

[pberggren1]

Least you were trying to have fun while getting those bruises! I still do stuff like that, just wrestled with my 9 yr old son, and had to tell him only 5 minutes..."I am too old for this!"

Wrestling? Are you kidding me? Right now I cannot even imagine wrestling with one of my cousins kids. I am glad you are able to do it even if it is just for 5 minutes.

[elephant]

Phil, I am so glad I can...I couldn't last year secondary to multiple surgeries. You will some day, you have been boggled down with a super bad infection.

[Doug]

Wrestling? Are you kidding me? Right now I cannot even imagine wrestling with one of my cousins kids. I am glad you are able to do it even if it is just for 5 minutes.

617 My cat Louie now "play preys" on me, and I'm stuck with a handful of purring panther taking me on, smacking me down, getting in the way of using the computer. I think, within reason (i.e. not to the point of doing something that compromises your recovery or current status) wrestling is a wonderful thing to be able to do!

[marta]

Wrestling? Are you kidding me? Right now I cannot even imagine wrestling with one of my cousins kids. I am glad you are able to do it even if it is just for 5 minutes.

Whaaaat? Where's Batman?
Bruce Wayne, you'll be back to hanging real bad guys by their toes in no time, you just watch. I can almost hear the Batmobile in the distance.

[pberggren1]

Whaaaat? Where's Batman?
Bruce Wayne, you'll be back to hanging real bad guys by their toes in no time, you just watch. I can almost hear the Batmobile in the distance.

Yes, Batmobile. I will have a 500 under the hood.