What have you done to improve balance?

Hi, Ray.... Yes, I confess.... I need to be more dedicated to following through with the exercises the PT gives me to do "at home".... like "Stand on one foot while brushing your teeth" or "Sit in a straight-backed chair ... then stand and sit back down 25 times.... and repeat this exercise 3 times each day." Oh, and there is that stationary bike I bought to exercise my legs. It collects clothes, books, and sundry other items. I'd have to clean off the bike seat to be able to sit... and then WHERE would I put all those things that have collected there!? So I let it go. I need discipline. I need to drive 10 minutes each day to get to the gym and join some classes.... cost covered by my Medicare. If I were participating with a group, I'd be more likely to get in the needed exercise. But first I have to drive TEN whole minutes to get to the gym! Imagine!! 😉

I HAVE fallen.... a few times. Not in public.... yet!! Tripped over something in my garage the other day and landed on my hands and knees. A few weeks before that I tripped over a water hose in my front lawn and landed on the soft grass. So no real damage yet... other than to my pride. I still think like I did at 50... but the falls remind me I'm NOT 50 anymore. Then I am reminded of celebrities like Christopher Plummer and Dr. Atkins (Atkins Diet Book) who each fell and hit their heads and died from their injuries. 😢 And like you, when the doctor asks if I've fallen, I'll brush it off with something like "Oh, I tripped and fell in the grass, but it wasn't bad at all." I'm glad you mentioned practicing for the next medical visit.... I need to do that, myself.

So glad I found this support group that helps me realize I am not alone.

Best wishes.... Mike

@domiha Hi Mike - glad to hear your balance is not getting worse in the past year and the AFO's are helping out with balance. But a stumble or fall can be a little dangerous. I have not fallen since the summer of 2023, and that one was a bad one. I now pay closer attention to where my feet are like not tangled around the leg of a kitchen chair when I walk. And I am careful to make sure my feet are pointing towards the direction in which I'm heading. It's a process of thinking where my size 14 feet are and since paying closer attention, I've had no falls. You hit the nail on the head; life is different, and we will continue to change, and we need to make adjustments along this way. Since my wife passed away in Feb of this year, now living alone, I am VERY careful, and I hope you are as well. Stay safe and keep moving. Ed

Ray - I've only moved 3 times in 53 years and each time, it was exhausting and to do it at our age, that IS exercise in itself. I'm glad to hear the move is complete and your balance did not get worse. You're right, I believe the same, exercise is what might slow down the progression. Ed

Balance? Falling down? Hitting your head? < — I’m there! A few years ago, I fell down and hit my rear-ends. That hit me for the last 3 years. The pain hit me; no more cutting the grass; no more walking for my doggies; hit my rear-ends over & over; hitting. My brain in the back of my head; and one.

Thankfully, 1 year ago, my doctor fixed part on the back rear-end and the pain is done, but still my right-foot wasn’t there and a lazy balance is there.

So, I exercise my legs & part of my back. Still, the feeling oh my right foot is still here, but I have a couple ideas… walking my 4-rolls, stretch my feet, stretch my legs by standing up 30 times, then stretch my feet & legs 1 back and forth 20-30 times then both together. I also exercise by lifting 80 times of 40-50 pounds. That helps me after in 2012 I became a TBI member.

Thx ask
Greg D. @greg1956

Ed – As I've had the learn, it's not always the Big Things that present the only challenging trip hazards, it can also be––and often is––one of the least of things. I mentioned in an earlier post that last week I did have a genuine fall, but for the past umpteen years I've not had a "genuine" one, only "almost falls" (and I've had plenty of those). A "least of things" that almost tripped me up was a medium-size carton I'd placed on the floor to carry out to the trash the next time I was going out. One corner of the carton was just a teeny-tiny sticking out in the path to the front door, and wouldn't you know it? the edge of my left shoe clipped it––just barely!––giving me another of my Way Out of Proportions fear that I was about to fall. I didn't fall, but that Way Out of Proportion sensation is one I'm all too familiar with: a foot will ever so slightly catch the corner of something or simply "feel" a stray extension cord, and my mind will go: WHOA! I'M GOING OVER! GRAB SOMETHING QUICK! (as though I were about to fall over the edge of the Grand Canyon). Ah, life with PN! Ain't it something? 🙂 – Take care, Ed! – Ray

@stephencbabcock - I was told by a top neuro doc that balance is controlled by feeling, sight and hearing. If any one of these are compromised, it can impact balance. I have numbness in feet so like you, if walk into a room and the lights go out, I'm in trouble.

Hi, Ed, @stephencbabcock. I've become aware of lights on/lights off curiosity. If I'm in a room and the lights are on, then no problem. Same thing of out-of-doors: if it's full daylight, again no problem. Strangely enough, if I get up in a dark––but familiar––room (as I do most mornings), once again I'm able to move about comfortably. (Dark, unfamiliar rooms? All bets are off!) I have the most difficulty with half-light: poorly lighted rooms and, if out-of-doors, pre-dawn and twilight. It's half-light that plays havoc with my balance. –Ray

Good morning, my fellow balance-challenged PN'ers!

On my mind this morning was honesty. Balance and honesty, Every so often each of us gets asked, whether asked by one of our doctors or by one of our truly concerned friends, "Has your balance gotten any worse?"

More often––maybe as often as several times each day––it's the same question we ask––privately––of ourselves, "Has my balance gotten any worse?"

I have tricky time––not a impossible time, but a tricky time––trying to answer that question honestly. My butt-in-ski ego keeps butting in. My ego demands that I answer, "No, dammit, my balance has not gotten any worse! I'm as steady on my feet today as I was six months ago. As I was a year ago. As I was when I was first diagnosed with PN."

But am I being truthful? That's the real $64,000 question that keeps spinning round and round in my head––as it has been doing this morning. (The neurologist, who recently changed my medication, emailed yesterday to ask if I've noticed any changes in my balance. I emailed back: "No, no changes, none whatsoever,"

But now I'm wondering did I answered honestly. Part of me thinks I did. But there's another part of me that wonders if I'm aware of any changes––any worsening of my balance––would I have told him? Or would I have fibbed? And if so, why? Because I'd not want to disappoint my doctor? Or …

… Or would I not have told my doctor the truth because my ego says I mustn't. Because my ego says I'm tough. My ego says, "So what if your balance is a little worse? Why bother your doctor with that? Why bother anyone with that?

"Most of all why bother yourself with some ridiculous suspicion that your balance may have gotten a little worse? After all, what good's that going to do?"

I'll leave it at that. Just another day of me going round and round on my PN carousel. 🙂

Ray (@ray666)

@ray666 - One thing for certain, you manage to get many of us thinking. I don't think it is a matter of being honest. I have found PN to be a rather complex issue. I have what I call good days and bad days with respect to numbness and balance. So, this can cause a variety of responses to how you are doing with PN. Today could be good, tomorrow, a flip of the coin. This is why I try to look back a year ago and think what I was able to do a year or two ago as compared to today. A benchmark of how we are doling needs to be looked at over time. I sure as hell am not doing as good as I did 4 years ago. But what does age have to do with it as well. Let's not forget there are many things out there way worse than PN. Ed

Ed and Ray @ray666 - I always take a look at what you guys have to say, as I live with a great guy with PN, and we are trying everything to slow its impact (note I didn't say progress - not sure medicine is there yet.)
You inspire me!
Ed, "I sure as hell am not doing as good as I did 4 years ago..." made me laugh - pretty sure most of us on Connect would say that - especially as our bodies keep defying us by aging and finding new parts to act up.
Ray, "...it's not always the Big Things that present the only challenging trip hazards, it can also be––and often is––one of the least of things..." - you mean like having one foot refuse to lift up when your brain tells it to? I didn't actually fall, I caught myself, but the resulting skin injury from a dirty board in the yard sent me to the ER for wound care and a tetanus shot.

So, along with exercises for my bad swallowing and impaired voice, PT for my repaired shoulder and respiratory therapy for my lungs, I do balance exercises every day. Pretty soon I'll have to exercise in my sleep!