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Tractor Boy

Distinguished member
Joined
Nov 1, 2014
Messages
165
Reason
PALS
Diagnosis
03/2012
Country
US
State
Michigan
City
Belleville
Hi all! I went through some older threads looking for comments about balance (or lack there of) issues. It appeared most balance problems were more minor than mine and most were ALS related.

As of yet, I've been diagnosed with PLS. However, I have lost my balance COMPLETELY. I mean I have zero, zilch, notta.... I can't even take one step without hanging on to something, be it my walker, furniture, countertops, etc. I've even fallen (sideways and backwards) while using my walker. I have a power wheelchair but still want to use my legs as much as possible.

I read a lot of folks correlated their balance problems to dizziness, but I don't get dizzy. It just seems my legs will not react to my lack of balance in the slightest way.

Please be aware I was recently granted social security disabilitiy (with Medicare) so I'm in the middle of health insurance changes, so I haven't scheduled my physical therapy yet.

Any suggestions, comments or recommendations would certainly be appreciated.

Thanks, Tractor Boy (newbie)
 
I meant that I HAVE been diagnosed with PLS, not ALS (yet). TB
 
>Any suggestions, comments or recommendations would certainly be appreciated.

I'd suggest seeing a doc asap ... lots of possibilities
 
Many of your balance issues mirror what I have. My balance is real bad, have fallen backwards, forward, sideways and every other possible way. I trip over things as well....but many of my falls have been purely balance related.
Some meds actually magnify my balance issues. The only thing that seems to help is keeping my core strength as good as possible by exercising, and keeping as active as possible. I firmly believe the only therapy that can help is strengthening your legs and core.
You can do many exercises seated or on the floor, which minimizes the possibility of falling.
It is my opinion that the root of my balance issues are progressive weakness in my legs and core. Also.....spasticity and having hyper reflexes, clonus in the ankles can contribute as well.
Bottom line...nothing will erase balance issues, and it can only be managed by ambulatory aids.
In a perfect world you (Tractor Dude) should be using a rolling walker. I am still struggling with that dynamic.
 

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I agree with Max, get in and see your Doc soonest. Like Mark most of my balance issues are minor and due to spasticity, meds and weakness.

Mike
 
Hey Big Mark,

Your symptoms mirror mine to the tee. Per your suggestions, looks like I better get off my ass and do something for myself. Thanks for the valuable input.

Tractor "Dude"
 
Big mark - what exercises do you do while sitting in a chair to strengthen your core?
 
Balance is achieved by small fast reacting nerves that go to the calf muscles and feet. They are the first to go. So even though you can stand you have no balance. For exercise of my legs I do some standing exercises. I have a horizontal bar about 3.5 ft high. I position my PWC about 2ft from bar so I can lean forward and barely grab on to bar. I stand up straight for several minutes then do about 20 deep knee bends being as straight as possible. Then I lean forward keeping one leg straight and one leg bent. This stretches my calf muscles. I do about 20 of these alternating which leg is straight. Takes about 15 minutes. I do this twice a day.
 
Bill Bell, what makes up the horizontal bar gizmo you use for your exercises?
 
Big mark - what exercises do you do while sitting in a chair to strengthen your core?

Basically any exercise that you can't rest your back against a seat helps with your core. Just stabilizing yourself while doing a resistance movement strengthens your back, abs, ad even your legs to a lesser degree.
I also use dumbells for all of my resistance movement, this has a better effect on balancing and stability than a straight bar or machine. The only thing I do standing is curls, with a straight bar, this movement really works the torso (core), and biceps as well. One thing I really feel is a great core exercise is the ab wheel. This works the abs, back, gluteus maximus, shoulder and arms. This is done while kneeling and is pretty safe.
My warm up is on a Health Rider, this works the entire body. Any lite cardio works the core, stationary bike, and treadmill (I have to hang on to the bars, can't seem to keep my balance).
I work out 3 times a week, for 45-60 minutes, depending on how I am feeling that day. This just for the resistance exercises, cardio is done in a separate time of day. Cardio consists of stationary bike and treadmill, I have to hang on to the bar.
Working out should be customized to each persons abilities. You should only do weights that can be done f in sets of 10-12.
Disclaimer: You should only do what you can handle. It is absolutely not about pushing yourself beyond what you capabilities. If you can't do 10-12 reps comfortably, you are using to much weight. Customize exercise according to your abilities, each person has different deficits. You do not want to tear muscle down, for me it is more about keeping tone and maintaining strength in what I have left.
 
Hi TB,

From what I've researched, balance problems are part of the PLS process. My balance has gotten quite a bit worse the past year but I still amble (because I wouldn't call it walking) unaided in the house and often out and about, though I can't walk any distance anymore and cant step down curbs, etc. on my own. I'm beginning to use a walking pole more now. Like the others have mentioned, core strengthening and gentle exercise is good to maintain strength for both balance and muscle preservation. I try to maintain my strength and endurance with swimming and other water exercise, stationery cycling (I bought a wind trainer for my road bike), warm baths followed by stretching, and specific strengthening exercise from my PT, though I continue to very slowly progress. I still can't believe this is me but maybe that's how I cope with it.

God luck, Kathy
 
I meant to say 'good luck' but I suppose both versions work.
 
From someone whose been dealing with this for over 20 years, I pretty much went years without diagnosis and just kept as active as I was always. I continued coaching soccer for years, even after I had lost the ability to kick a ball or run a field with my student players. Yes, it was embarrassing to fall on the side lines, but I got up and kept going for 16 years. The last two years were coaching from a camp chair on the sidelines. Then when I couldn't do that anymore, I still did other things to stay active and use my muscles. Always with a cost of pain and sometimes humiliation of not being able to keep up like I use to. My point is that it took about 17 years to be diagnose correctly. Living life to the fullest of my ability has kept me out of a chair for years. I believe that is what has kept me up and moving. I am now to a point that my losses are bigger, or at least they seem bigger because they are harder to get around. I have compensated for different losses, but now my losses mean I can no longer do something I enjoy and I am running out of things to fill in that need to be productive with what I have.

I think that being misdiagnosed for so many years had turned into a blessing because I kept doing what I always had done to stay busy and healthy. This has in turn, kept my core muscles stronger longer. I can no longer kick in water and even though I am a natural floater in water, I get fatigued in my core muscles just floating. But I will keep doing what I can till I can no longer. So with this said, being safe is important too. I have fallen and broke my hip as well as other bones over the years with balance issues. I am slower and cautious when I am up and walking in the house. I no longer walk outside the house. Good luck in finding what works for you.
 
A big thanks to ALL of you and your comments and valuable suggestions. I have (admittedly) been procrastinating, feeling somewhat sorry for myself, and have been down right lazy. I am committing to all of you that I will begin a more regimented exercise and stretching routine to help myself (for a change).

Sincerely, Tractor Boy
 
TB......remember to not overdo your exercises in the beginning, and it will get better with time.
Challenge yourself to be as active as possible for as long as you can.
You must grasp the pebble from you massas hand...................
 

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