"Rubbery" Legs?

I fall quite a bit; seems as if I simply tip over/lose my balance. It happens off either leg, and seems to hit me out of nowhere. I've been an athlete my whole life, and have recovered from some pretty severe injuries, but no matter how much work I do to build up my legs, they just don't seem to support me enough. And, yes, they feel rubbery as I begin to go down; mostly feel as if my hips are collapsing, at which time it's too late to recover. My physical therapists told me I likely have vestibular problems. I have both a PT and neurology appointment coming up soon through Medicare. The VA hasn't offered much in the way of healthcare. I'm only 71 and felt like a youngster until being diagnosed with PD five years ago--for more than a year, I had trouble walking--was even stopped by the police who said that some neighborhood (busy-body) phoned the police to report a suspicious man walking down the street who was either drunk or on drugs. After that bit of inconvenience, I had my wife videotape me in action, and worked on walking a lot more naturally based on what I looked like on the video. I do balance and strength exercises religiously, and although I've improved my overall strength and flexibility, I'm still collapsing to the ground several times a week. I can get up all right, but I think I'll follow your lead and take a cane or walking stick with me in order to appear less suspicious.

Hello! (@horowitz71)
Your message has me rethinking much of what I have already posted about my situation. I'm one of those forever looking for a better way of explaining to doctors and friends what I feel so that they better understand what I experience. "Tipping over" is a good one. That's what it does feel like for me. And it does come out of nowhere, without warning. That's why I'm forever on guard. And why I started carrying a cane. Unlike you, I would never have called myself an athlete, but in the '70s, I got into running (as I recall, Frank Shorter winning the Olympic marathon kicked off the running craze); I was never a World Class runner, but I ran well, running marathons here, there, and everywhere, never medaling but finishing with decent times. Then, in 2009, I was told I needed a knee replacement. That ended my running days. Today, I concentrate on leg strength because of my neuropathy (a diagnosed idiopolyneuropathy), with questionable results. Generally speaking, my legs feel stronger, although I still have certain days and hours of the day when my legs feel "rubbery," like I can't trust them. The sensation usually passes in about 2-3 hours; then I'm back to just dealing with my by-now-familiar neuropathy wobbliness, which I do my best to manage (the cane, taking it slow, some wall- and furniture-walking). You say that you do fall quite a bit. I've fallen, but not that often, and it seems each time I'm able to say precisely why I've fallen; for example, my last fall was about a month ago: it had begun to sprinkle, and I was rushing {rushing? never a good idea!) to collect the patio furniture, turned too fast (turning without thinking is also never a good idea), and went plopping on my butt. No damage –– other than to my pride. I'm glad you've joined the forum. I look forward to hearing more from you!
Ray (@ray666)

@horowitz71 - As I read your post, many of us can relate to your situation, but your first few sentences struck me. I wear orthotics 97 of% the time, help a great deal, was prescribed for drop foot but as an added benefit, they also NOW help with improved balance. When I don't wear my orthotics, I do walk with a cane. Three years ago, it would need the cane later in day when tired. Now, that has changed due to increased numbness causing poor balance. My orthotics have worked out well for me. I don't like them, but I have no choice. Like reading glasses, when you get a cane, get several, they are not expensive but worth having. Wish you the best!

Hello, Ed (@njed) Something you said about orthotics caught my attention. You say your orthotics do help. I've been wondering. So many people I talk to say, "Oh, barefoot is the only way!" They warn me that I've distorting not only my feet but everything else up & down the lower half of me. But I've been wearing orthotics since the late 1980s. My joints up & down the lower half of me (feet, ankles, knees, hips) are used to the orthotics. These same joints complain when I do go around barefoot. Whether the orthotics help much with balance, I'm not sure, but I sure am more comfortable when I'm wearing them. When I have an at-home day, I've tried going around barefoot. While it feels great for a while, it's only a short while. I've come to believe I need to wear them as much as possible. I believe, after all these years, I'm doing my joints a disservice when I don't. ––Ray (@ray666)

Has anyone heard about neurosimulation with thoracic scs? A device is surgically placed under your skin and sends a mild electical signal to your spinal cord. Thin wires carry current from a pulse generator to the nerve fibers of the spinal cord. When turned on, the SCS stimulates the nerves in the area where you have pain, or in this case, rubbery legs.

Hello, Rita (@ritajung)

I've heard about it, but so far little more than that; certainly, nothing strongly pro or con. I'm sure others will post here who have more to say. At the moment, I'm putting all my effort into strengthening my legs. The top of my wish list is to keep my PN from getting any worse, if that's even possible, or at least for as long as it might be possible. I'll be watching these posts, naturally, for what others may have to say about neurostimulation..

Cheers!
Ray (@ray666)

@ray666 - Ray, I wish I could go barefoot and living at the beach isn't fun when I can't go barefoot. If I try to walk barefoot, my feet slap and I face the possibility of my toes getting bent under the foot, it has happened, and I trip forward. Even when I wear sneaks which I wear with the orthotics, I need to make sure the fronts turn upward a small amount, so my feet don't catch downward. I can't wear flat shoes. The orthotics I wear have a strap up around the calf. These cost my insurance company about $1200 for the pair. They are saving money in insurance claims as compared to me falling!

Hi, Ed (@njed) From what you say, I may need to talk to my podiatrist. I may need a higher-grade orthotic. The design of the pair I have right now –– although I've purchased new orthotics many times over the years –– looks not much different from the pair I was first given back in the '80s. My feet, especially the right (which had some drop foot 8-10 years ago), don't so much as "slap" the ground as "slip-slide" along, especially late in the day when I'm getting all-over tired anyway. ––Ray (@ray666)

@ray666 - My physical therapist contacted my primary doc who wrote a prescription for my Ottobock walk-on-flex. Immediately, I felt a huge difference. The drop foot was gone with these on, and I was no longer walking lifting my knees like a two-year-old. As an added benefit, I found I have much better balance. Not inexpensive, about $650 per and my Medicare plan covered the cost. Takes about 2 weeks to get used to them but a good company that sells orthotics can suggest the right type for each person's needs. In disclosure, I do not work for this company (might sound like it) it's just that these things have given me the ability to get around.

Please check out Ben Patrick's site on Youtube. He's the world famous knees over toes guy, and what he's done after a knee-replacement surgery is flat-out incredible. He's proof positive that much of what we view as handicaps are self-imposed barriers.