PN & Confidence: Is there a connection?

I've found that I need to change the type of glasses I wear when walking. I needed a separate pair, dedicated to walking, yard work, and they are fine for driving as well. I used to wear progressives so the lens progressed from distance to reading, but with the onset of PN, that transition from distance to close up made walking a nightmare. The ground was not where it looked like it was. What my eyes were seeing was not what my legs were reacting to when I stepped down on rough ground. I've learned that if I am wearing glasses with a progressive lens, I'm better off not looking at the ground before stepping off, especially on known terrain as in my yard. I know how far it is from my front porch to the ground right below it, but what my brain registers because that is what my eyes see through the deceptive glasses, isn't what is really there. This has been a whole new learning curve. My next purchase will be a new pair with an up to date Rx for distance (with prism) but NO progressive. They'll be used for yard work, walking, and driving. Just don't ask me to read any fine print with them!

This may be the wrong place to post this, but my L5-S1 and left hip (the one that had anterior THA almost 4 years ago) seem to get stuck and give me back pain. It goes into the left leg and the leg used to feel just some pain, but now feels not only tingly and aching, but is painful in the entire leg and foot tingles too. My doctor won't do a biopsy to check for peripheral neuropathy. I saw a podiatrist and he ordered an EMG but that appointment is still pending. It may be radiculopathy as my L5-S1 has spondlylolisthesis. I am to the point that I have a hard time walking now with pain, stumbling and can't exercise or walk as I'm afraid I'll fall. I may have 2 problems, the back and leg but it just continues and painful with life stuck in a rut with no way out. Any help is accepted. If this needs to be moved to neuropathy, please do so. Thanks.

First of all, I have an awful lot of inner pride for the physical improvements I’ve made and the hard work I put in physical therapy to get from wheelchair to wobbling unassisted. I am thankful for what I can achieve today vs when I got my sudden crippling PN handicap. But that’s not what other people know or see.

Where I struggle with self-confidence is how other people look at me. No, it’s not my imagination, and it’s not just little kids who stare a little too long. I was 51 (now 60). I get looks assessing me when I get out of my handicapped spot or grab an electric cart in the store. I get much more compassion though and people offering me assistance, but for those that look at me like I’m damaged or contagious, it doesn’t help with self confidence. I had a person “joke” that I needed to be cut off at a social once because I wasn’t walking straight (I don’t even drink).

Maybe it’s more self awareness vs self confidence and that little bit of sadness that comes with what I’ve lost. Overall my inner pride wins over the awkwardness that I might feel around others, for they don’t know what they don’t know. As @njed has coached, I try to stay positive and focus on what I CAN do!

@ray666 I've come to realize that balance work––along with core and leg strengthening––are my best bet if I've a chance of extending the reasonable even-ground mobility I currently possess. I work at such exercises most even day.
😅.
Luckily for me - I have had and taken the opportunity to enjoy exercise. I started my first gym journey at 21
Today. I take balance classes. Weight classes. Work out 3 x a week with a personal trainer. And one light spin class. Yes, I have a full time job- me= mobility.
Our gym offers a class called Rock Steady for people living with Parkinson. To my advantage, my PT. Leads that class. It revolves around strand balance. Her training benefits me.
As mentioned earlier, I went to Physical Therapy for help with balance It was a life saving experience atthat time. I still practice those skills. ( standing on one foot for 30 seconds or longer is a skill- learned. )
I would think anyone dealing with the downfalls of NP would highly benefit from sessions from a Physical Therapist schooled in-this discipline.
Some insurance will pay for this with a doctor’s script.
Learning how to fall— yes, there is a safer way- can be taught also.
I would encourage anyone walking this walk— take advantage of of everything out there that could either help your everyday life and or extend your mobility
Who knows- maybe all that increased blood flow through your bodies- will slow down the consequences of PN.
I hope to help -to hold up my friends. Others, just aren’t walking in our shoes.
Ora et labora

Good morning, @heisenberg34

" … feels as if my feet are connected to my lower legs with swivels." Swivels? That's excellent! I'd not heard "swivels" used before. That seems to be one of the gazillion challenges we face as folks with PN: How to come up with the right words to explain to someone who doesn't have PN what PN feels like. I'm going to remember that one: "swivels." Perfect! Thank you!

Cheers!
Ray (@ray666)

Good morning, @debbieod

Reading your story had me thinking back to those first signs that I might be the road to a PN diagnosis. Of course today it's only hindsight that gives me reason to suspect those early signs may have indicators of future PN. For me, those signs first appeared in the 2010's when I'd just retired and was doing volunteer work for a local writers' organization. As a volunteer, I'd often have to do set-ups and take-downs for large-group events (carrying chairs and tables and the like). On certain evenings –– not all –– I'd experience a "weird wobbliness." The wobbliness would pass after only a few minutes, not to reoccur for sometimes a week or more. I chalked it up to nothing, certainly nothing to tell my PCP or even my partner about. Today I wonder: Was my long-ago "weird wobbliness" an earth tremor, a foreshadowing of a bigger quake to come (my 2022 PN diagnosis)?

Here's wishing you a good day!
Ray (@ray666)

Hi, @debbieod

Amen to all you say! For many of us, consistent balance practice may be our last best bet. You're doing far more than I do – and you've raised the bar for me 🙂 . I do work with a PT, but only once a week. At my urging, we stress balance work – balance, coupled with leg and core strengthening. He asks that I do regular sessions on my own three times a week. I do. But a troubling problem I have is bad arthritis in my left knee. (My right knee is already at TKR.) I'm getting regular injections in my left knee. They help, but that help is not long-lasting. At 80, and with "balance issues," I sense a little hsitation on the part of the orthopedic staff whenever I ask about the possibility of a second TKR. I feel I'd make much more progress wih my balance practice if only it weren't for the arthritis.

No matter. Onward and upward!

Cheers!
Ray (@ray666)

"Where I struggle with self-confidence is how other people look at me."

Ah, yes, the looks –– and the unasked for offers of help. I'd a moment the other day when friends dropped by –– friends my partner and I used to visit frequently but haven't in several months because of their ultra-stylish furnishings (e.g., armless, low, low chairs) and my difficulty standing after sitting for spell. (I know this is a sad reason for not seeing friends!) The other day, visting our home, the friends announced that they'd acquired a "chair just for me." My silent reaction? My silent twofold reaction? Gratitude on the one hand (which I did give voice to), and, on the other hand … what should I call it? Resentment? Mild-grade anger? (unspoken, of course): How dare my friends call attention to my struggle standing from low chairs! How rude of them to even notice! (Crazy, isn't it –– not my friends. I mean me. 🙂 But at least what I'm telling you is honest: my "silent twofold reaction" to what can only be characterized as kindness. Ah, PN, do you see what you're doing to me? 🙂 )

Cheers!
Ray (@ray666)

I have a tumor on my lower spine and have had several surgeries to remove it and radiation treatments following the last surgery over the course of the last 9 years. My neuropathy has gotten worse and I'm getting a new AFO brace made for me as we speak. It should be in in about a month so I hope to have more confidence and move around better. The last orthotist made me a brace that no longer serves me so this will be my third brace and I'm thinking positive of the outcome. I work on balance exercises regularly but don't feel like it's helping me but I keep doing them because I'm afraid not to.
I live alone so nobody has to see me touching the walls as I navigate myself around the house. I recently spent the night at a girlfriend's house and she kept asking me am I all right? I couldn't believe I had to finally tell her that this is the best I could do under the circumstances and explain to her again what I'm going through. It's hard having to explain the reasons why I have lost mobility and I walk around like a drunk sailor but I try to look at what I can do instead of what I can't do anymore. I have to use cutouts in my shoes to relieve a foot ulcer that I've had on and off the last 2 years and gets infected every now and again. This AFO is hopefully going to help me relieve the pressure from the great toll from my drop foot due to my neurological challenges that I suffer from as well.

I have a unique situation going on and I hope there's somebody out there that can resonate with me because it's a lot to deal with at once. My journey began in my fifties and I am now in my 60s. I get mad when people say things like this is age-related because my tumor is hereditary and very rare and doesn't manifest itself until later on in life after it's been growing there for all of my life.