Living with Neuropathy - Welcome to the group

Hello, @cariloo,
I've not seen anyone on Connect say that they are especially fearful of turning or changing direction (resulting in a fall), but this is exactly my greatest fear, also. It happened last month as I was putting away groceries and decided something belonged in a different place. Thanking God that it didn't result in a break or even a bruise but it sure alerted me to how readily this can happen and how serious the consequences can be.
I have experimented over the last 30 years with many remedies (hopeful) for my PN, from a menthol spray to
Class 4 red light therapy to PT, and currently am finding the most complete relief in a combination of Pregabalin, Tramadol, a recumbent bike, my wonderful chiropractor of 25 years, and an investment in a BEMER system, purchased through my physical therapist. It's too complicated to explain in a post, so better to just google it and get the facts from the manufacturer. Expensive? Yes. Works? Yes. Helps me to stay independent, living alone (with my dog!) and in control of pain, and more content than I deserve. I'm 77 and female and live in the midwest with all four seasons ~ and some in excessive ranges.
As for socks and footwear, what works best for me are the running shoes with lots of support and basically no flexibility. They keep my feet flat on the ground - you might say well grounded. I buy a full size larger than what they fit me for in the store. For me, the best socks are thin and not at all binding or tight. You didn't mention if your feet feel cold or if you live where it is cold part of the year. For indoor shoes, I love allbirds wool loungers and wool mules. No socks needed! Where I live they can only be purchased online.
I wish you all the best as you navigate the therapies that work best for you.
Barb

Hi I am taking a turn in direction but I thought that you all might have some ideas for me either based on your own experience or same with a parent. I gave both balance issues and mobility issues and I want to order a lightweight portable walker. Till now I have used my mother's but she was 6-7 inches shorter than me and by the time she needed a walker she was no longer driving. So I am looking for a walker with probably height adjusted handles and the key thing is lightweight as I am the person taking it in and out of trunk. Any ideas would be helpful. I am currently looking on Amazon so one that needs to be put together at home is fine. Any recommendations are appreciated. Thanks! Susan

Hi, Barb

It surprised me when I read what you said: "I've not seen anyone on Connect say that they are especially fearful of turning or changing direction (resulting in a fall) … " ––surprised me only because, as my balance has improved, turning or a distraction from either one side or the other has remained one of my greatest concerns. A daily example of this concern is going down the walk to fetch our morning newspaper. Most often I'll find the newspaper lying in rhe middle of the sidewalk. Before I dare bend to pick it up, I'll always look carefully left and right, concerned that a pedestrian may be approaching. With my unreliable balance, the last thing I need is to be unaware and suddenly hear an approaching neighbor call out "Good morning!" or or the patter, pat, pat of an onrushing jogger. Just another of PN's delights!

Cheers!
Ray (@ray666)

@scain
I often fall to the side. One day when using an aluminum U-shaped type of walker I fell to my right. I was walking through my living room and all of a sudden I started to fall to my right. So instinctively, I put out my right foot sideways to regain my balance, but the walker prevented me from moving my right foot that way. I ended up falling hitting my head on a glass table and getting a bunch of staples in my head.
So you might want to be aware if any device would prevent you from regaining your balance.
If your looking for the least weight carbon fiber would probably be your best choice, but it is more expensive than aluminum.
I don't like any walking aids but after my experience I'd use a cane if I had to rely on something.
Be safe,
Jake

I understand what you mean about the danger of turning. When I make a left turn, I find myself Teetering with no good way to correct it.

I also have most of my balance issues while turning. We have a 6' island in the kitchen that leads to the backyard or the living room. I use this island as a literal touchstone (ha!). No need to grip it or even hold on to it. Simply placing one finger on it gives me all the balance needed. Has anyone with PN figures out why turning is a common problem for us. I did take your recommendations and just ordered a lightweight, portable walker.
Thanks everyone!

Hi Barb, I also meant to add that if you have been living with PN for 30 yrs., you might be the resident person to run things by before investing or wasting time with different stuff to help with this problem. I have just been officially diagnosed with PN. I say that with a grain of salt as I began having mobility problems, I googled the symptoms and diagnosed myself. That is also how I found this site. Anyway, I also take into account that just because we all have PN, it doesn't mean that we all have the same symptoms or that any one thing will be helpful. That said, I also take pregabalin for a different problem, but when I finally met with the neurologist after a 6 month wait, she said that that drug is the most helpful for nerve damage pain, etc. However, I have noticed in the past week or so that the pins and needles are starting to really act up at night and they prevent me from getting a good night sleep. Is that why you are taking tramadol too? As I said, being new to this game, I am just trying to figure out what is helpful and not so helpful for the majority of PN sufferers. I too, am concerned about living independently as long as possible. My older sister (18 mos.) said that when we finally have to go to assisted living, as a group of baby boomers, we are not going to want to listen to the "canned music" that they play. Of course, she was joking. But with that in mind, I just put together my playlist on Spotify so that I can at least listen to music that is my choice. Trying to control the things in our power that we can control I guess. Thanks everyone for sharing. I think that that one thing might make us different from our depression era parents who seemed as a group to go to the grave with their problems. Susan

Jake, I have trigeminal neuralgia. i.e. pain across upper right teeth gums and sometimes in the jaw. Was prescribed cabamazepine. Felt drunk during the day ATAXIA. Have halved the does from 200 to 100 at night. In morning I take 1/4 teaspoon of cayenne pepper. All good now depending on whether I don't put plenty in my drinks and tea. Tried tenor sax a little while ago. Some pain in teeth with low noes. Otherwise all good. No ataxia.

Good evening, Jake (@jakedduck1) -
Yes! This is exactly what concerns me most. My recent example with the groceries presented a scenario similar to your experience. I cannot walk without a cane (unless there are pieces of furniture along the path I'm on) and that cane has presented as much danger as it has help. I sometimes find I am leaning on the cane (in my left hand) and want/have to walk toward the left. If I'm not paying close enough attention, the momentum of my body turning left without thinking first and being able to move the cane I'm leaning on, leaves me no recourse but to spin and fall on my right side. I don't think a lighter or heavier cane would make any difference. And unfortunately I have no advice, even to myself, except to be aware not to take any step for granted as being completely safe.
Wouldn't it be grand if, like using the trains in Europe, there was a voice that said, "Mind the gap" before we ventured anywhere to walk?
Barb

Good evening, Ray (@ray666)!
I so agree with you. I don't have to go out to get a paper but it scares me half to death to find myself suddenly in the path of fast-moving young people or of folks whose ability to remain standing would not in the least be compromised by bumping into me or stopping suddenly in front of or next to me. Yep - another of PN's delights! Now that I think about it, heavy doors without the wonderful automatic opening function have almost bowled me over, too, especially in the wind.
I hope all is going well with your move, and that you're not letting fatigue get the better of you. Balance is even more precarious, then!
Cheers to you, Ray ~
Barb