"Rubbery" Legs?

Posted by Ray Kemble @ray666, Apr 14, 2023

Hello, all!

I've been diagnosed with idiopathic polyneuropathy. For the longest time, I've been able to get around pretty well. It's only been recently that I've started to carry a can around with me. Most often indoors I don't need it. What has me concerned are my legs: they seem to be getting weaker, especially toward evening. I tell people it's a "rubbery" feeling like I can really trust my legs. My knees especially feel untrustworthy. Has anyone else experienced this? Have you ever come up with ways to un-rubberize your legs? I've not fallen, at least not yet, but going around, especially outdoors, I'm always on guard.

Ray (@ray666)

Interested in more discussions like this? Go to the Neuropathy Support Group.

@ray666

It is so easy to think it is all so very discouraging. Even though I've done the crazymaking go-around of different doctors and different rests (perhaps not nearly as many as others have), I'm still refusing to give up. If I can only manage to slow down the progression of my PN, I'll be a happy camper. Steps without handrails have been my bugaboo from the very start. In fact, my dread of "naked" steps was the reason I quit acting. On the evening of our first rehearsal (three years ago), I took the set designer aside and asked if he'd make sure that any steps that he might be planning would have handrails. That night driving home, I thought to myself, "That's it, Ray! Never before have you asked for an accommodation to be made in a set. It's time to retire!"

Jump to this post

I hope you don’t “retire” from acting, and seeking accommodations when needed. How about some staged readings where everyone is seated and acts from the scripts in front of them. Handrails on stairs would help everyone’s safety. And remember Lionel Barrymore in his later movies. He had accommodations for his increasing mobility disorder with crutches and wheelchair in “You Can’t Take It With You” and the Dr. Kildare series, and acted up a stormy villain as Mr. Potter from a wheelchair in “It’s A Wonderful Life” opposite Jimmy Stewart. You can watch him in action on Netflix or YouTube for inspiration. The ADA is all about accommodation to allow people with any disability access to a full life. Please don’t “retire” before the curtain comes down, Ray.

REPLY
@efgh1020

I hope you don’t “retire” from acting, and seeking accommodations when needed. How about some staged readings where everyone is seated and acts from the scripts in front of them. Handrails on stairs would help everyone’s safety. And remember Lionel Barrymore in his later movies. He had accommodations for his increasing mobility disorder with crutches and wheelchair in “You Can’t Take It With You” and the Dr. Kildare series, and acted up a stormy villain as Mr. Potter from a wheelchair in “It’s A Wonderful Life” opposite Jimmy Stewart. You can watch him in action on Netflix or YouTube for inspiration. The ADA is all about accommodation to allow people with any disability access to a full life. Please don’t “retire” before the curtain comes down, Ray.

Jump to this post

Hello!

Your post put a smile on my face! I've no intention to quit acting, not "for good," anyway. At the moment, I'm enjoying my time away. It has given me time for writing, my second passion. I also smiled when you reminded me of the many fabulous performances by actors who required "accommodations" –– smiled, because I was reminded of a funny moment (not funny at the time!) when, decades ago, I played the part of a character who was wheelchair-bound. One evening, in front of a full house, I attempted an entrance in my wheelchair, not knowing that that day the crew had put a new doorframe in place, just narrow enough that there was no way that I was going to be able to get through. My actor playing my son saw my problem and said, "That's okay, pops. Stay there. You and I can talk with you there." All the audience could see were my character's slippers poking through the doorway. Remembering that night was what gave me my second smile!

Ray (@ray666)

REPLY

I too have Weak kegs and scuffing feet worse toward evening. I have fatigue also worse towards evening. I'm fortunate I don' t have a lot of pain. Now I feel the neuropathy must have traveled to my upper extremities. My hands shake with purposeful movements and my forearms feel heavy. Things seem to be getting worse fast. It all started in my toes 19 years ago. I should consider myself lucky. I also don't have good control over my feet, at times they feel like they are propelling ahead of me. I also feel I'm "tripping over my words" when speaking.

REPLY
@cidle3

I too have Weak kegs and scuffing feet worse toward evening. I have fatigue also worse towards evening. I'm fortunate I don' t have a lot of pain. Now I feel the neuropathy must have traveled to my upper extremities. My hands shake with purposeful movements and my forearms feel heavy. Things seem to be getting worse fast. It all started in my toes 19 years ago. I should consider myself lucky. I also don't have good control over my feet, at times they feel like they are propelling ahead of me. I also feel I'm "tripping over my words" when speaking.

Jump to this post

I am so sorry. Your situation sounds a lot like mine. The majority of my pain is in my lower back, but I think it’s because I had back trauma from a fall and surgery. This is the first time I’ve heard anyone say anything about their speech being an issue. I’ve been having periodic speech issues that I call “slurring.” It seems to happen when I do a lot of talking or I’m upset, but after 15 minutes or so my speak returns to normal.

I’ve heard there are five stages to this disease. How does one determine what stage they’re in based on their symptoms?

REPLY
@cidle3

I too have Weak kegs and scuffing feet worse toward evening. I have fatigue also worse towards evening. I'm fortunate I don' t have a lot of pain. Now I feel the neuropathy must have traveled to my upper extremities. My hands shake with purposeful movements and my forearms feel heavy. Things seem to be getting worse fast. It all started in my toes 19 years ago. I should consider myself lucky. I also don't have good control over my feet, at times they feel like they are propelling ahead of me. I also feel I'm "tripping over my words" when speaking.

Jump to this post

Hello.. I feel your concern. I'm going on a year with the same problems. Do you feel comfortable in certain shoes?

REPLY
@cidle3

I too have Weak kegs and scuffing feet worse toward evening. I have fatigue also worse towards evening. I'm fortunate I don' t have a lot of pain. Now I feel the neuropathy must have traveled to my upper extremities. My hands shake with purposeful movements and my forearms feel heavy. Things seem to be getting worse fast. It all started in my toes 19 years ago. I should consider myself lucky. I also don't have good control over my feet, at times they feel like they are propelling ahead of me. I also feel I'm "tripping over my words" when speaking.

Jump to this post

Hi. I find it particularly interesting that you say your leg weakness and scuffing are worse toward evening. That's my problem, and I've never been able to figure out how why. I've blamed it on nothing more than end-of-day fatigue, but there are days –– late afternoons, which I'd think would prove cause & effect –– when I've cycled (stationary cycle) followed by some evenings when I have leg weakness and other evenings when my legs feel fine. I find it all very puzzling. ––Ray (@ray666)

REPLY
@ray666

Hi. I find it particularly interesting that you say your leg weakness and scuffing are worse toward evening. That's my problem, and I've never been able to figure out how why. I've blamed it on nothing more than end-of-day fatigue, but there are days –– late afternoons, which I'd think would prove cause & effect –– when I've cycled (stationary cycle) followed by some evenings when I have leg weakness and other evenings when my legs feel fine. I find it all very puzzling. ––Ray (@ray666)

Jump to this post

My weakness in my legs is pretty much all the time now. I get very tired late day. I attribute it to the effort I have to use walking, Now having problems with dexterity of my Upper extremities. I drop things and my hands shake with purposeful movements. Things seem to be going down fast. I need to do more exercise, chair Yoga, stationary bike etc.

REPLY
@cidle3

My weakness in my legs is pretty much all the time now. I get very tired late day. I attribute it to the effort I have to use walking, Now having problems with dexterity of my Upper extremities. I drop things and my hands shake with purposeful movements. Things seem to be going down fast. I need to do more exercise, chair Yoga, stationary bike etc.

Jump to this post

I’m so sorry. I am right there with you.

Last night I was having nerve pain in my lower legs and feet so I got my TENS device out and put the pads on my legs and turned it on. I had to turn it up to level 5 intensity before I actually felt it. When I usually put it on my lower back, I can’t stand anymore than intensity 3. So I have some numbness going on there.
It did feel better though after I did for about 20 minutes.

I hear there are 5 stages of this illness. How does one know what stage they’re in?

Sandra

REPLY
@cidle3

My weakness in my legs is pretty much all the time now. I get very tired late day. I attribute it to the effort I have to use walking, Now having problems with dexterity of my Upper extremities. I drop things and my hands shake with purposeful movements. Things seem to be going down fast. I need to do more exercise, chair Yoga, stationary bike etc.

Jump to this post

I'm able to report some leg weakness at other times of day, but mine is still more apparent in those later hours, 4-ish to 7-ish. I continue to find it mystifying why this should be so. Maybe it's because I'm still in one of the early stages of this illness; that, too. might explain why I still don't have any pain. It's all so very mystifying, isn't it?

REPLY
@ray666

I'm able to report some leg weakness at other times of day, but mine is still more apparent in those later hours, 4-ish to 7-ish. I continue to find it mystifying why this should be so. Maybe it's because I'm still in one of the early stages of this illness; that, too. might explain why I still don't have any pain. It's all so very mystifying, isn't it?

Jump to this post

Good morning.

I started doing a little online research regarding the 5 stages of neuropathy this morning

This was definitely eye-opening. I am unable to attach the link, but suggest that those interested to just put that information in your Google search engine and you will find it. Note: I cannot guarantee the accuracy of this information.

It appears stages 1 and 2 consist of light and occasional numbness and sporadic pain. As you read on stages 3 and 4 symptoms become more frequent and painful with numbness. Stage 5 symptoms are technically irreversible and you will lose all function in your legs and feet. Of course, everyones situation is different.

Using this as my guide, I would guess I am between stage 3 and 4 with my illness. What is really surprising is it indicates symptoms in stages 1 through 4 can be or relieved and sometimes reversed provided you work on the cause of the Neuropathy. From what I understand, Neuropathy doesn’t happen overnight. It is something that has been coming on for years.
Since there are so many possible causes, how does one figure out which one it is and do something about it to keep it from progressing. I guess process of elimination would be the answer here or maybe we should consult a crystal ball. The doctors don’t seem to be able to answer this all important question.

Have a blessed day!
Sandra

REPLY
Please sign in or register to post a reply.