What have you done to improve balance?

Posted by thomasmichael @thomasmichael, Jul 20 4:20pm

could you please comment if you have been able to measurably improve your balance? what did you do and for how long each day? thank you!

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Need help to restore balance

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@njed

@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

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Oh, I agree, Ed, 120%: it's about far more than aging. You say (and it made me smile) that I can sometimes get us thinking. 🙂

Let me tell you how that comes about. I journal. I've been journaling for decades, long before Julia Cameron came along and urged people to journal doing what she called "Morning Pages." I'm almost ashamed to call what I do "journaling." "Scribbling" is more like it––especially with how illegible PN has made my handwriting! (I think we talked about that once, about how many checks we end up having to s*can because even we can read them!

Well, long-story-short, in yesterday's scribbling I was reflecting on how I'd only a few days earlier I assured the buddy in whose company I'd been when I took my monumental coffeeshop PLOP!––attracting the frightened attention of baristas and customers alike––that I was looking forward to our next coffee. When he asked if I felt "up" to another coffee, I heard myself saying, "Oh, hell, yes! That little ker-plop! was a 'nothing' event. I've forgotten about it."

That, Ed, was another of my partial-lies. On the partial-truth side, I am looking forward to our next coffee. Also on the partial-truth side, I do consider my fall––perhaps not a "nothing" event––it was at least a "pay attention" event.

But on the partial-lie side, I have not forgotten about the mini-scene I made, disturbing the peace, wallowing on the coffeeshop floor like some overturned horseshoe crab, needing a slew of helping hands to get my PN-rattled self back on my feet. I believe you and I are both great believers in Get Up, Get Moving! That's not changed. What my fall has done has given me pause for thought as I continue to little adjustments I need in order to Get Up (next time maybe on my own? maybe?) and Get Moving 🙂 .

(Just to assure you, I know there are gazillions out there living more challenging lives than I am. Many right here on Connect. And beyond Connect? All I need to do is watch the Evening News.)

Here's wishing you, Ed, and all of us, the best possible day, whether you're here on Connect or … or wherever you are!

Cheers!
Ray (@ray666)

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Balance is a huge thing for me. I lift weights with my legs every other day. Machine leg press and hack squats as part of an overall strength routine that takes me about 2 hours to fully get through. In between sets I do reps of assisted body weight calf raises and ankle dorsiflexion. 100 a day. My calves are completely atrophied and I walk like Lurch on the Addams family. Has all this improved my balance … no. Am I “less worse off” because of all this effort … who knows. The upper leg strength is significantly better, so getting in and out of a chair has markedly improved for me.

Have I fallen?? Yes, many times. I just try and protect my head when I’m going down. Dislocated fingers and shoulder joint injuries from making sure my head doesn’t hit the ground too hard. Do I admit all this to my Dr? Yes, without hesitation. Why not, my ego is so far gone already.

I recently got a cane and I use it when I’m walking on uneven surfaces. It helps. And similar to all of us, I’m hypervigilant about every step I take. It’s weird to devote so much brain power to taking a step. My working memory impacted I’m sure.

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@sueinmn

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!

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Good morning, Sue (@sueinmn)

First of all, thank you for your kind words! You've brightened my morning!

My problem with those "least of things" that lie in wait to trip me up are my duck-toed feet, or splayed feet, the result not so much of my neuropathy than a lifetime of having severely flat feet. I wear medical-grade orthotics; once a long-distance runner, I've been wearing top-notch orthotics since the mid-'80s. The orthotics do wonders for my ankles, knees, and hips, but nothing for those sneaky little duck-toed feet that, if I'm not paying attention, sure as anything will snag on the most inconsequential of projections, projections (like the corner of a carton set on the floor) that other people would kick ever-so-slightly and go right on about their day. I try my darnedest to be careful. In fact, I've a walk-about mantra: "Eyes up! (to lessen writer's hump) Heels first! (don't slide your feet) Stride out! (with caution) and Toes in! (to correct for those duck-toed feet). I try. And I try. Sometimes it works. Sometimes the result is a mildly embarrassing Opps!

Have a wonderful day, Sue!
Ray (@ray666)

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@ray666

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)

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I get all of that Bro. Its like a concession to giving in to admit. I fight all it tooth and nail.

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@ray666

Good morning, Sue (@sueinmn)

First of all, thank you for your kind words! You've brightened my morning!

My problem with those "least of things" that lie in wait to trip me up are my duck-toed feet, or splayed feet, the result not so much of my neuropathy than a lifetime of having severely flat feet. I wear medical-grade orthotics; once a long-distance runner, I've been wearing top-notch orthotics since the mid-'80s. The orthotics do wonders for my ankles, knees, and hips, but nothing for those sneaky little duck-toed feet that, if I'm not paying attention, sure as anything will snag on the most inconsequential of projections, projections (like the corner of a carton set on the floor) that other people would kick ever-so-slightly and go right on about their day. I try my darnedest to be careful. In fact, I've a walk-about mantra: "Eyes up! (to lessen writer's hump) Heels first! (don't slide your feet) Stride out! (with caution) and Toes in! (to correct for those duck-toed feet). I try. And I try. Sometimes it works. Sometimes the result is a mildly embarrassing Opps!

Have a wonderful day, Sue!
Ray (@ray666)

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I managed to trip but not fall again today - my mantra is "tie those shoes" - now I even have some that zip. What did I trip on? A bit of rope on the shed floor.
I'm a long-time fan of orthotics too - I even have special ones for my sandals -to correct a lifelong toe-in on my right foot that makes me "list" to the left. If I don't have shoes on, I can sometimes veer off-course so badly I bounce off walls and door frames.
So as I look forward to my 80's I get ever more cautious, trying to break my lifelong habit of rushing. Any tips?

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A couple falls was all it took to remind me to slow down.

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@thomasmichael

A couple falls was all it took to remind me to slow down.

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I'm a slow learner! And even though I've been retired for years, I have hurried since I was a small child, and my brain is still trying...I have learned to carry small loads and very carefully - especially up and down stairs.

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@sueinmn

I'm a slow learner! And even though I've been retired for years, I have hurried since I was a small child, and my brain is still trying...I have learned to carry small loads and very carefully - especially up and down stairs.

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Sigh, that's still a lesson I have to fight with myself daily - it's safer to do it 2 trips instead of trying to carry too much in one trip 🙃

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@sueinmn

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!

Jump to this post

Ed, Ray and Sue,
Your posts make me realize that with PN, life is now under a microscope. I have PN-ostensibly related to celiac disease and I have now cleared my diet of gluten. I made some progress with the tingling feet but then I guess overdid it at PT and back pain came to visit me. Taking Advil helped with that but it seems did not help my PN and it upset my stomach too. I was also sensitive to the Icy Hot that I massaged into my back. Today I am trying tar cherry juice. I now look at everything that changed as to what I am feel-ing-that includes the weather(high humidity and temps in charge here). I have only been with this condition since February --my neurologist says I have a mild case--yet it wasted my muscles. I try to do balance exercises, stretching and strength training. PN is surely life-changing--let us refrain from calling it aging and put on a brave face as we climb the mountain!

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