"Rubbery" Legs?

Hi @tessie63 - I don’t use the rollator type of walker because the braking/hand gripping is too much with the neuropathy in my hands. The seat on it did seem handy when I first started walking again (after 6 months in a wheelchair), but it wasn’t the most comfortable position for me as I recall. I try not to go out on extra weak leg days and hope there’s a chair nearby, but I fortunately have very few days that disruptive anymore.
The most disabling issue with my walking is the knee function. They bend enough for me to walk a little stiff, but I can’t jump, hop, skip, run, crawl, or climb, and squatting is extremely difficult & unsafe. I consider my upright walker my “Swiss Army Knife” for both safety & practical purposes. It allows me to:
1) Lean on it to reach high shelves
2) Hold onto it to get to the low ones (seems most of my groceries fall under #1 & #2)
3) Help me get on & off curbs and climb the occasional wide step or get over foreign objects
4) Helps me get on doctors’ exam tables if they insist
5) Has a large strapped on pouch to carry things I think are important: wallet, keys, small medicine pouch, sugar tablets, CELL PHONE, pen & sticky pad for notes, chapstick and sunglasses (otherwise what most women use a purse or handbag for). I keep the contents as light as I can. It can also fit some grocery items, and I keep a couple of plastic bags in there for when I’m shopping & need to put other items in a bag, because I can’t carry one of those plastic totes stores provide
6) It has a hook that allows me to hang those plastic shopping bags that I might fill up while walking around the store. Depending on size or weight of items, I can get 4 bags easily, and it’s so satisfying that I’m able to have walked all over a store to get that exercise in!
7) It has a cup holder… radiation left my mouth/throat dry and I need hydration every so often if out for long. It’s perfect for carrying my yeti cup with ice to the pool for fun & exercise, with my pool bag carrying my towel, sunscreen, snacks & book hanging from the hook described in #6.
In other words, my walker that I call my Swiss Army Knife provides safety and some independence! It’s nice not asking my husband or other people to help me with things this walker can do instead. The hardship for me then actually comes from walking this tool! While it’s not heavy, I lean on it to push. I’m putting weight on my arms and shoulders I shouldn’t have if just to walk. I have it set high and try not to grip the the handles too hard, but even with ski glides, it is actually more work than just walking, so that’s the added arm/hand/shoulder collateral from using it. I’m learning now to carefully assess my mission and time each time I go out and make a choice on whether I should use a cane or nothing at all, but there’s those “purse” type necessities that requires carrying a bag and then worrying about sidewalk cracks and curbs in new places etc. I’m still trying to figure it all out, but I know I have choices I can make regarding safety and convenience, and am thankful for that!
One choice I consciously make now is to not take my walker inside a doctor’s office if at all possible. A doctor YELLED at me because of it, he really upset and disappointed me. The appointment was about a possible necessary surgery, and just from seeing that walker in the room, not even seeing me use it, he ranted about me being unfit for a surgery that would require some effort on my part for the physical therapy afterward and so on. I wasn’t able to get a word in to explain my Swiss Army Knife or show what abilities I had; he already had a very nasty opinion of walkers and I was speechless anyway. Thank GOD I didn’t need the surgery or this doctor, so I no longer have to (or would) see him again. But I started noticing other doctors’ notes on my patient portals over a couple of years, whether my PCP, GI, Cardiologist, and eventual Oncologist notes, saying “patient uses a walker for mobility ”, I imagine sometimes the same comment was cut & paste from doctor to doctor. Well, I started feeling a little stigma about it; I didn’t feel those few words represented my mobility as positively as I would like, and my memories I can’t shake of how that nasty doctor yelled about it, even though I know he was just one bad apple. So I take a carrying bag to doctors appointments with everything I need in it. I keep my walker in my car. I’ll carry a cane if needed or to be safe, but fold it up in little pieces and put it in my bag before I enter the office. I don’t want them judging me by a cane or walker, they need to see what I can do, and not have the walker note any more. I am nabbed if they ask me to climb up on the table or have to ask them to help me off. I (and my medical records) tell I’m limited/disabled and I be sure to explain I am a fall risk if they’ve forgotten. I just want them to be able to see what I AM capable of. I know it’s not the safest choice and seems like a poor reason for me to stop carrying my walker into a doctors’s office of all places, but I sure made a terrible incorrect impression in that one situation and don’t ever want to risk that happening again. Like I said, I am lucky to have that CHOICE to make. I have gotten stuck at a curb and have asked strangers for help.
So, your daughter would be 100% correct if she was suggesting what was adding to my discomfort in my arms & shoulders! Your case could be the exact opposite. I have set my walker as high as it will go. I don’t use it in the house. I am so grateful that I haven’t “needed” the walker or wheelchair for much at all in the past couple of years when it just comes to the walking function alone. I’ve only had a few weak times, injuries, or surgeries when I briefly needed them. We only have so much energy we have to expend, and only so much we can ask people to do for us instead of seeing how we might be able to safely do more for ourselves, so if my walker is the smartest tool for the job, I will choose to use it! I appreciate your help and am sending prayers your way!

Good morning, ssjohns (@ssjohns)

Going from one doctor to another can certainly be frustrating. It has been for me. And still is, if a little less so: a few months ago I decided upon a program I'm calling (my own made-up word!) "de-doctorizing." The idea behind de-doctorizing is –– insofar as I can, and making exceptions for emergencies –– not allowing my calendar to get all gunked up with doctors' appointments. If possible, I'm trying to limit those appointments to never more than two-a-month (i.e., Week #1 with an appointment, Week #2 without an appointment, and so on = 4 weeks, or one un-gunked month). So far I've been pretty good at de-doctorizing. Yesterday, I met with my neurosurgeon (which I'll tell about in a separate post); yesterday's appointment was only my second doctor's appointment in April, so it looks like I'll be able to declare April a de-doctorizing success. LOL!

Ray (@ray666)

Good morning Ray. I suppose I’ve been doing the same thing mainly because it takes a lot of energy to get ready to go to an appointment and also the expense involved for Transportation. I have a nice lady that picks me up and takes me to my appointments. She has a transport chair which I require. One trip will cost me about $65 not including the co-pay at the doctors office. I have arranged transportation to the appointment at Shands in September and that trip will cost me $300 round-trip. (2 1/2 hours away) I sold my car about two years ago because it sat in the garage for two years and had repeated dead batteries. My blurred vision, and nystagmus was the reason I stopped driving. It’s been quite the adjustment since my husband passed away in 2014. Now 68 and struggling on my own.

I am so glad I found this support group to be able to discuss our common
symptoms and methods. The three PPPs, pills, patches and potions, only do so much to relieve pain. Sandra.

Good morning, gbrodnan1945 (@gbrodnan1945)

I'm a year older (78). I'm guessing that the onset of my PN may have been as long ago as 10 years, but I can't be sure. Back then I had only these occasional episodes of unsteadiness (never any dizziness), but the episodes were brief and not especially alarming. I first began to think my balance trouble might be a sign of something serious about three years ago. We share some of the symptoms you describe, but not all. I've never experienced any tingling; in fact, if the EMG I had last fall hadn't told me I'd a significant amount of numbness in my feet, I might never have guessed. However, I can complain of leg weakness, centered mostly on my knees. Oddly, enough, I feel this leg/knee weakness more often toward the end of the day; I'm prepared to accept that this weakness shouldn't really surprise me, not if I've been doing any exercise that day. Often this weakness will last until bedtime, but by morning my legs and knees will feel fine, ready for another day of doing whatever. As far as exercise and slowing the progression goes, I've no authority for saying that exercise does help slow the progression, but I believe it does –– balance work, especially, has helped me avoid falls, and that's something in itself!

Ray (@ray666)

Hello again, Sandra

My apologies: I'll need to keep this short as work is whispering, "Don't forget about me!" LOL Your costs are far more demanding than mine, but even I had cut way, way back on those expenses, while vital, could possibly be avoided. Last year I had to stop going to PT because the copays were mounting. I felt I was getting something out of the PT, but I knew I had to find a cost-free alternative. Since then, I've been doing an online PT program (minimal cost), from which I believe I'm still benefiting. Yes, this support group is fantastic! It has certainly helped me, in one Big Way and that's letting me know I'm not alone!

Ray (@ray666)

Upon reading this, it made me angry that a doctor would yell at you for using the walker in his office. I would have told him where he could go and walked out! That was so unprofessional of him! You are lucky you are able to walk some on your own. What I wouldn’t give to be able to walk, even just a short distance, with a cane. I lost all ability to walk on my own when I had chemo. I only had three treatments but it destroyed both my feet and hands and my back is weak now and it won’t hold me up. I have a love hate relationship with my walker. I’m grateful I have it in my home but for longer walking sessions I hate it. My arms ache so much from using it. My physiotherapist feels that I need a deep massage to loosen up my tight neck and shoulder muscles. I have gone twice now to the same person for help with this but she doesn’t seem to know what a deep massage is. I am on a blood thinner so maybe she is afraid of bruising me but she is doing nothing to help fix my tight muscles. Both my feet are dropped and a podiatrist told me they are actually paralyzed. I use AFOs in my shoes to aid in walking. I have come to the conclusion that this is an affliction I will have to accept and carry on with my life the best I can. It was nice hearing from you. Next time a doctor talks to you like that you get up and leave. Use your walker to keep yourself safe. That’s the important thing. A fall could really hurt you worse than you are now. Take care an God bless you!

Hello, all!

Some of you know I had a 12-month follow-up with my neurosurgeon yesterday. A year ago, an MRI showed some spinal cord compression (spinal stenosis of the cervical region), but the doctor told me two key things: (1) the compression might not be the cause of my balance problems –– I'd yet to be diagnosed with PN), and (2) that if were to operate to relieve the compression I might find after recovery that I still had my balance problems. A fresh MRI done in advance of yesterday's meeting revealed that the compression had worsened –– not yet urgent, but if I wanted to be eligible for outpatient surgery while still eligible (I'm 78, and otherwise healthy) sooner rather than later might be the way to go. The doctor again emphasized –– and I assured him I fully understood –– that surgery might be of no help with my PN –– it might, but then again it might not. I'm thinking of this as good-sense preventative doctoring: to avoid future and more serious damage to my spinal cord. And who knows? The surgery might actually help with my PN. I can dream, can't I? LOL! Although I am feeling positive about having the surgery, I will still seek a second opinion from another of my neurology doctors. The earliest I could have outpatient surgery is June 27, so I've time to think.

Ray (@ray666)

Thanks for your support.

Please…pay attention…neurosurgeons are trained to cut. How goes that old adage, A carpenter with a hammer….everything looks like it has to be fixed with a nail! See an orthopedist or a neurologist whose mindset isn’t ready to cut. Besides, surgery pays a physician a lot more than they’re prescribing anything else to give you relief.
I had spinal surgery for scoliosis, many years ago, open back style before minimally invasive was a thing, and the surgery crippled me, ruined my career and my life. I’m 82 now and have learned to live disabled for decades. Many doctors would find late 70s spine surgery unadvisable. A fusion may be involved. But even the affect of anesthesia on an elderly brain is questionable. There are other ways to treat compression of nerves, do some research. Physical therapy; injections of cortisone; losing weight; adjustments to diet. Do see another opinion with a health provider whose orientation is to cut. Today, many chiropractors have non-invasive equipment that can gently stretch out your spine while you lie on a “bed” and in a couple or few sessions, may open the space between the vertebra so that the nerves that are squeezed will be relieved. I’ve used such a table and found the feeling wonderful!

Sorry for the typo 6th line from end. “Do see another opinion with a health provider whose orientation IS NOT TO CUT!”