"Rubbery" Legs?

Thank! I found what looks like a good video. I've not watched it yet, but I will. I am a great believer in exercising both my knees, the replacement and my "real" one; the more I exercise them, the better I feel. ––Ray (@ray666)

I relate to the buckling knees, which for me came on fairly suddenly and unpredictably around the stenosis, back surgery, and unrelated infections I underwent in a two month period in the winter of 2020-21. I have been since diagnosed with polyneuropathy, caused by an autoimmune reaction to one or more of those factors. Immunoglobulin infusions have been part of the treatment.
What has also helped me in PT is upper body and core strengthening, along with exercises for my legs. Specifically Aquatherapy has helped all of that, along with giving my brain and body a sense of balance.
However, I do not get up or move across a room without a walker, trying to put more weight on my legs than on my arms and shoulders, but needing the support on both sides of my body. I also finally acquiesced to an orthotic brace for my left foot drop. I have not had a buckle or a fall in a while.
For longer distances, I use a wheelchair, without embarrassment, or the feeling that I haven’t been “working hard enough.” It all helps me live the life I want within my new limits.
But when I was falling frequently, legs buckling out of nowhere, I had to get to a good neurologist and a number of wonderful physical therapists, who continue to work with me in this new normal. I also had to get the equipment I needed to augment all of that. It’s a lot of adjustment, but worth it to me and my helpful family.

Good morning! (@efgh1020)
Ah, yes: a lot of adjustment! That's so true. But I believe –– as I suspect you do, too, from what you say –– that adjustment is the key to success. I found when I first realized that my neuropathy was not something that was simply going to go away ("take two pills and you will feel fine in the morning") that adjusting was hard, even the fairly minor adjustment of carrying a cane. I balked about even having to carry a cane, and for the longest time, if I even bothered to bring it with me, I'd carry it under my arm like a riding crop. When I think about that now, I laugh. How foolish I was! It has taken time, but now I am a great believer in being honest about myself and that includes taking my cane with me everywhere –– and using it like a cane and not like a riding crop! LOL Your message is a tremendous endorsement to all of us to keep working at what helps, adjusting when necessary, and holding positive thoughts about what can yet be achieved. Thank you for posting today!
Best wishes,
Ray (@ray666)

@ray666 - Ray, how true! With the ever-changing symptoms of PN, we need to be totally open minded about changes to our lifestyle because the disease itself brings on various/new symptoms. And, as it changes, if you don't adjust, issues will arise, and coping will be difficult. When I look back, I now have 5 symptoms relating to PN that I did not have in 2017 and none of the 5 have disappeared. I keep adding on new ones and some decrease in time but not go away. That is why we must be open minded to changes on how we live and then make the changes. Ed

Thank you for this post. Acceptance is hard! Adjustment comes along easier after that. I’m glad you are now letting your cane do some of the walking with you.

Ed (@njed) –– I initially found it extremely hard to change my lifestyle. I hadn't realized what a proud guy I was, mountain trekker and marathon runner that I was, but PN can be unforgiving, patient but unforgiving, waiting on the sidelines until inevitability sets in. When inevitability set in and I finally climbed down off my high horse (i.e., my pride), life got better, and pretty rapidly, too. I suppose you could say that was the dawning of acceptance for me, and along with acceptance came both the willingness to adjust (e.g., go slow, carry a cane) and to search out what therapies might be of help, if not to "cure" my PN, then at least to make newly adjusted lifestyle as manageable and full as possible. ––Ray (@ray666)

Hi, @efgh1020 !
I'm doing my best to take my cane along, even when I'm pretty sure of the ground ahead; for example, going to the market yesterday: I know my way around the market like the way I know my way around my house; until yesterday, I'd left my cane in my car, but yesterday I took it with me, not that I really needed it but to say to people –– and to myself! –– this is who I am.
Ray (@ray666)

@ray666 And, you will take notice that with a cane, there are a lot of good people out there who will hold the door open for you. I found it to be astonishing and .... I live in Jersey!!

Well done, Ray. You never know when you will need your cane, until you do! Having it, and using it as you did, is a great step forward.

@ray666 - I like your post regarding your "dawning of acceptance", well put!! I went from hardly being able to say the words peripheral...what...to then figuring out how to spell it to where we are today. A lot of resistance at first, oh no....what, how could I have that..... to learning, acceptance and coping. In between, a lot of learning about yourself! I think that dawning of acceptance for me was when I was fitted for my orthotics in 2020. I looked at these and thought this is how it is going to be. But, from that point on, my thinking changed, I became more positive, re-entered PT and said OK, so I can't do everything, let me do what I can and make adjustments as needed along the way but not give in. Remain strong, keep moving and don't forget the cane. 🙂