Living with PN, do you find yourself retreating from life?

@ray666
Hmmm. That leaves me wondering who it was who enquired. The time in the "tank" is very enjoyable. Doesn't seem like exercise at all, but when I get home, I know I've used some muscles!

Hi all. Thanks for the thought-provoking question, Ray. I can say I no longer take the kind of long, solitary hillside walks that cleared my mind and exercised my heart just a few years ago. Even with an AFO, and sometimes hiking sticks to boot, I'm scared of falling. I'll never run a half-marathon again. But last weekend, I did three miles on a popular trail, figuring someone would help me out if I were sprawled sideway in their path. I'm not keen on nighttime freeway driving these days but that's more a symptom of aging (I'm 77) than it is of PN. I have come to realize that I now have to exercise my will to do things I took for granted not all that long ago. I'm in an improv group that meets weekly in the basement of an old office building that was constructed before zong boards required elevators. To get to our dark little lair, I walk down 26 steps and I can tell you that I know each of those 26 steps like A to Z. Sometimes banisters can be a guy's best friend.

As a former athlete, this Neuropathy is something no one anticipates. But from whence I came (ventilator) and grim ICU diagnosis, I can't complain, to be honest. Covid-19 and after effects are ever present but I'm dealing with by the grace of God. If I could shake this ailment from my left foot and ankle my balance would 80%. the other foot is slightly damaged. Periodically, there's discomfort over the permanent stiffness.

Hi all! My way of dealing with the aging and balance issues is that I have no shame anymore! If invited to an evening event, I happily say, “I don’t drive after dark, would you pick me up?”. When approaching outdoor steps without a rail, I wait until someone comes along and ask,”Could I hold your arm to go up these?”. I’ve planned a neighborhood walking route with the least amount of broken uneven sidewalk squares and walk daily by myself and weekly with an older lady neighbor. I knocked on her door and asked if she’d like to- people are looking for new friends!
I go to small group meetings at my church, but don’t attend services. I’ve found people in large groups close together make me nervous about being jostled and thrown off balance. That happened at a museum when someone pushing a wheelchair behind me pushed right into my ankles and I started going down. I instinctively reached out with both hands to a man in front to my right, he grabbed my arms and saved the day. Another time in a crowd, I was hit from behind by a stroller being pushed, I went all the way down hard.
Both times, the people weren’t very nice, tried to say it was my fault. It was other people who helped me up and made sure I was okay.
In stores that might be crowded, I bring a cane, people tend to give you a wide berth. I try to suggest going places during not busy times- I google the place and check the graph for those times.
It’s a life of being very careful. After my last hard fall by myself outside, my brother insisted I buy a smart watch, it gives me a lot of piece of mind.

You have me smiling, @chawk, if a bit ruefully. I applaud your being part of an improv group. You go on to mention steps and banisters. Oh, do steps and banisters bring back memories! You might know from some of my earlier postings that I made my living in the theater, and that my last stage show became my last because of steps and banisters. I'd gotten involved in the show, knowing that my balance was becoming a problem, a problem, it seemed, more and more every day. On the first evening ofrehearsal, when the designers presented their designs, I made a special point of intercepting the set designer on his way to his car. I asked him, if any step units he was planning on incorporating in his design, would be good SOLID steps, with good FIRM banisters. A short while later, while driving home, I said to myself, "Uh oh, Ray, you've never had to ask for those things in your life ever before. Something is wrong." A few weeks later, I got my PN diagnosis, and when I did, I decided it was time to retire from the stage. Ah, PN, what you do to us! 🙂

Cheers!
Ray (@ray666)

Good physical therapy. Not just any but one that works with balance issues. I have full neuropathy. I also had 2 back surgeries and my balance was poor. I had a super physical therapist who made me work. I exercised for the full half hour. I asked my neurologist if they had physical therapy and he said yes, so I went to therapist who helped me with my back surgeries. All therapist are Not the same. If you don't feel improvement, hire a different therapist till you find one. I thought exercise would be impossible with neuropathy but it is not. Probably the best thing that I did. Therapy only last so long so you have to keep it up yourself. Not as much fun though and I get lazy. I also have 2 walking poles, not cheap ones. The VA provides them for me. Helps alot. Stay hydrated for your muscles and don't over due, that will work against you. I hope you will try physical therapy.

I’m 86 still play music 3 or 4 times a week, go to the gym 5 days a week & spend a spend the most of 2 hours on the machines. The leg strengthening has Helped my balance a lot. I loved hiking in the hills of Arizona & Oregon,
I don’t do these anymore & walking in the dark is a problem.
I read that MIT has been experimenting with injecting a product into some animals that repairs damaged nerves & looking @ trying it on humans in the future.
Ya’ll take care.

Seems you are suffering from depression which is a constant companion of chronic pain. Have you talked to your doctor about this? If you want to see your friends you have to surrender. Tell them about your condition and choose a safe way of transportation, like a travel wheelchair, and ask for help with this choice of transit. People who can and really love you with offer the help you need, or fall away as friends. Talk to your doc about treatment for depression, this can open up more possibilities for you to go out and enjoy yourself. It is hard to lose mobility and accept that we may need to stop pretending that this is only temporary. What helps me is acceptance of my condition and that I have to make changes in my life. Your condition is nothing to feel ashamed of it is living in today, stay out of the past and what you used to be able to do. Isolating doesn't help the problem; acceptance and new measures do. You don't have to like it to accept it, find new ways to accomplish what you want to do. Good luck.

@centre Hi centre! WOW you sound like me, I do exactly what you are doing... no crowds and if necessary I use the dreaded walking stick. I go to restaurants for dinner very early, I use to laugh at the people who went for early bird specials, WELL here I am. I park my car as close to curb, so that I can use headlight for assistance up the curb. I try to stay as active as possible, indoor water aerobic at local college 2x a week, go to gym 2x a week. At home I have a under dest eliptical, a tens machine and a vibrating platform with a handle bar for stability. BALANCE ismy chief complaint. No pain just burning in feet and tingling, mainly at night. I consider myself sorta fortunate not to have pain, but balance issues certainly makes living life limited. Best Wishes to you! Oh I also found having the right shoes help. So far the best for me is the Hoka Ahari, just bought the OD Oncloud Nova, still not sure about them....We must always keep trying and doing our best! Thank goodness for Mayo Connect, better than any neurologist I have ever been to and I have been to 6, I have PN 10 years now. They just cant help!