TKR out of the question when you've got PN?

Hello, lynfrommn (@lynfrommn)

It sounds like you and I are at a similar place on our PN journeys. I only have the one TKR (right knee), but that was done long before I began to show any signs of PN. I nearest I can come to stated the nature of my PN is chronic idiopathic axonal polyneuropathy. I've no pain, just my wonky balance.

I'll be meeting with my orthopedist next Wednesday and we'll discuss the future of my left knee (my arthritic knee). I'm not so much concerned that a second TKR might worsen my balance as I am (as my orthopedist might, too) worry that a fall post-TKR (due to my poor balance) could imperil my new TKR.

I've not fallen in quite some time, and none of my long-ago falls did me any damage (other than embarrassment 🙂 ), so falling is not an immediate concern. With a new TKR, however, it most likely would be a concern. Also, I live alone. That would add to any post-TKR concern.

Thanks for your reply! I wish you all the very best!
Ray (@ray666)

Hello, projfan (@projfan)

I am go glad you did NOT hesitate to suggest gait therapy! I've suspected for the longest time that, if there were a way to narrow down the focus of the PT I'm currently doing, it would be to place top emphasis on GAIT.

My gait is a mess. I know that. I've known it for years. It began with the ache of severe flat feet, genuinely relieved by orthotics (since the 1980's); then a drop-foot episode (in the 2000's), the gradual addition of arthritis (ankles, knees, hips); then my one TKR (in the 2010's); and now my PN.

To really mess up my gait, I was laid up (mostly off my feet, recliner-bound, and shoeless) for 14 months, the result of a sepsis infection (which produced a grotesque 8" wound in my left foot). It's hardly surprising that my gait is all messed up! After all that time, just learning to wear shoes again was a reall challenge.

Your message (which I've saved) has inspired the heart-to-heart conversation I'm going to have with my therapist when I see him next Monday. Our topic? GAIT! 🙂

Tell me more of your experience in recovering your gait, but only if you wish and you've time.

And thank you a millionfold, projfan, for your message!

Best wishes!
Ray (@ray666)

@ray666

You are very welcome, and, wow. That's quite the saga.

I will say that not every PT is qualified to do this, or has the training and experience to do it well, so that's a question worth pursuing.

The PT I worked with was a deep believer in strengthening muscles rather than using supports to replace muscles, and had me buy new shoes without any sort of arch support. I had been using custom insoles for decades after plantar fasciitis surgery, and ceasing to use them was very strange. I now switch off between shoes with mild arch support and a large toe box, and barefoot shoes with no support and also a large toe box -- made the shift after the peripheral neuropathy diagnosis about a year ago.

Gait is a commitment on your part. It took at least six months before I stopped focusing on how my foot performed with every step I took. The hip brace came partway through, when it became more clear that changing how the muscles in my feet operated was insufficient. I now know that all this eventually traced to back scoliosis that was sufficiently minor that it was never treated, but which caused torque through my entire lower body, and is ultimately why my pain focuses in my right hip and left knee. (I wore the brace for several months on my left hip, and to this day I need to focus not to stand hip-shot with my weight on a single leg when I stand still.)

This is probably not your issue, so I give you the saga mostly to show that you need someone who can really pick apart the details of how you stand and move, grasps the root causes, and has the experience and patience to gradually change that. It was not a lot of physical labor -- it's hardly cardio -- but it is a lot of focused attention every. frigging. time. you. stand. and. walk. Which can get a bit old. But as I was, you sound motivated.

I also did not have balance issues at the time. If you need to tackle both at once, it's even more important to have someone who can adapt to your more complex situation. It wouldn't surprise me if that's a big reason why this is not a common solution -- between the skill your PT needs, and the habit changes you need, and (at least in my case) the stripping away of supports that were recommended by a doctor in the first place, I can see why most doctors just wouldn't go there.

But it's pretty harmless, you can stop at any time, you do see (slow) progress as you go along, and it doesn't interfere with meds, etc. I suspect that if you are using a walker or cane or walking poles routinely now, it may take even longer to resolve, but that doesn't mean it can't be done -- it just means the process might be a bit trickier and have more steps.

Babies start with crawling, right? So we've already done something like it once, and now we just need to substitute some discipline for the enthusiasm that pushed us through the first time!

You'll have to keep us posted.

Hello, projfan (@projfan)

Your messages have me stoked! Since yesterday, all I can think about is gait, the importance of good gait, the deterioration of my gait, the need for me to emphasize gait recovery, and the many months and hard work it's going to take for me to recover some semblance of good gait. My PT is also not an enthusiast of braces, belts, and straps. He does understand (or at least he appears to) my need for my orthotics. If, when he arrives at my home for an hour's session, he sees I'm sock-footed, he'll often say, 'Okay, let's do a short workout with you only in your socks, but then put your shoes on. Let's not aggravate your knee more than we have to.'

Just for the heck of it, a few months ago I tried a random sampling of other kinds of shoes. Like most of us here on Connect, it's hard not to hear of others' favorite shoes. Among the kinds of shoes I tried were the much admired Hokas (even my podiatrist wears Hokas) and a pair of barefoot shoes. Neither worked for me––or were "good" for me. The Hokas were too "cushy;" made me feel less secure, not more, walking about; and the barefoot shoes did what I feared they might: radiate too much firmness of the ground to my arthritic knee (the feeling was much the same as the one I get if I spend too much of any one day walking about here at home in only my socks).

I've developed a little at-home discipline to relieve stress on my knee and see if I might "teach" myself to walk about more naturally: I put my shoes on (with the orthotics onboard) not long after I get up each morning and then see how it feels if I leave my shoes (plus orthotics) on for as many hours as possible. What I've been discovering is that the longer I go about in shoes, not only is my knee happier, but also I walk "better," more normally, more like how I used to walk. Something I've noticed, however: I do have to PAY ATTENTION––pay attention to each and every step. If I let my attention stray, all of a sudden it's 'Uh-oh, I feel wobbly! Better be careful, Ray. Better pay attention!'

I, too, have scoliosis, and mine, too: never serious enough to require treatment. I'm sure now, between my poor gait, my PN, and my scoliosis, whenever I'm going about, indoors or outdoors, rough ground or smooth, familiar surroundings or unfamiliar, I'm challenging my body's internal gyroscope big-time. 🙂

I'm glad to hear that I sound motivated. I'd like to think I am. Yesterday, I did an online search for gait specialists in my area (although I believe, with a little conferring between the two of us, the PT I'm working with will be of genuine help with my gait); I found a few local clinics offering gait therapy, none of which (unfortunately) is truly "local." I'll see what my current PT and I can accomplish before I commit to a 3/4-hour or hour's drive.

You mentioned walkers, canes, etc. I do use a cane, but not 24/7. I have found (to my surprise and delight) that when I've been going about in shoes for as little as a 1/2-hour or 3/4-hour, and if I'm PAYING ATTENTION (!!!), that having a cane at the ready fades in importance.

I will keep you posted on how I proceed. They have been a real tonic––your messages––and have me re-focusing on gait.

Cheers!
Ray (@ray666)

@ray666
I found a wonderful assistant who came in to help after my latest hip replacement. She came every day for a few hours and kept me going; she was not here full time. (My daughter stayed stayed for a week after my hip replacement. ) The assistant came daily for a few hours after that. How did I find her? She worked full days, in turn for two families I know where member of the family was staying in the home while in hospice care. Perhaps a call to a local hospice to see if they know of people they can recommend who can do in home care for someone needing care for a few weeks. Another location that might be able to suggest someone is an Adult Foster Care home. I found I could manage during the night. She came came in during the day, fixed meals, did errands, got groceries, saw that I got my meds, picked up Rxs, did laundry, changed the sheets, etc. She did not do full house cleaning. She was worth every penny, and now as PN is increasing, she comes for 3 hours one day a week. That is enough to keep me going; I still cook, make my own meals, get my own groceries (I still drive.), but she does whatever needs doing, and now we have a regular check list that she goes through so I don't have to be telling her or reminding her what needs doing. She's probably in her early 30s, has a 1 1/2 yr old daughter who spends the time w/ grandma while her mom, my helper is here. She is becoming a very good friend. With my permission, her mother and her 1 1/2 yo daughter stopped by to say hello last week. It was a delightful visit. Good luck. Wonderful, capable people are out there.

@projfan I still work on gait and balance after therapy for both 25 years ago. I had to learn to walk again and developed balance issues. Car accident
You are correct not every PT is as trained in depth as others.
@ray666 the specialist might be good also for more in depth balance - brain- training.
My trainer from the gym that runs Parkinsons classes is high on core strength to prevent falls. You have to be strong in those muscles to self correct when an uoset occurs.
You can strengthen your leg muscle by simply standing on one leg. I always brush my teeth like a flamingo.😂
Blessings to both of you
debbieo

Hi, @debbieod One of the practices my PT and I do is petturbation drilll, where he'll attempt to knock me off balance by giving me a shove without my knowing from what direction the shove will be coming. –Ray (@ray666)

@ray666 Hi, Ray ~
How on earth do you keep your balance? I could be on the floor faster than in a New York second with the slightest brush of a passerby if I'm not, as you say, paying attention to every step or even to just standing. Consequently, I avoid walking in crowded places, or at least I wait for people to clear out.

This discussion is VERY interesting. I had to look up perturbation - never heard of it. And the conversations about gait training are wonderful. Lots of things to bring up with docs and PTs. I sure hope some of the options that others have experienced success with, will help you find a tailor-made solution to your knee and balance problems. Please let us know how things are progressing. All the very best to you with your upcoming appointments this week! ~ Barb

I have problems with balance and walking and have bought a walker with a seat. I can go for a walk and sit down whenever I feel like it. It’s lightweight and I can get it in the car if needed.

Welcome @chazledine1925, I do need a walker at night and keep one next to my bed for those nightly trips to the little boys room. 🙃 I can walk but just not very far due to what I think is bent spine syndrome. I know walking is really important to keep your mobility so I have been thinking about getting a walker of some sort for daily nice weather walks outside. I just need something that helps me keep a more upright posture while walking and haven't found anything I like yet. Thanks for sharing your experience with a walker.

Have you had a knee replacement or thinking about getting one? Do you have neuropathy?