How do you manage neuropathy and loss of balance and walking ability?

In my case: balance= dizziness= falls and sent me to Neurologist. thankfully never had pain, just do not feel the floor. I use a cane but am very mobile and active at 75. After two months of testing culminating with a spinal tap I was diagnosed with CIDP.

Hello!

My greatest concern with regard to my poor balance (I've large-fiber PN, so no pain, but terrible balance) is the degree to which my life has been narrowing down: fewer meet-ups with friends (unless they come to visit me), fewer away-from-home activities (one big exception: doctors' visits), fewer trips to local markets (ordering online instead), fewer (if any) "grand plans" (give a second-thought to visiting old colleagues in LA)––on and on. I'm sure there are others of you out there who have a similar concern: less so the bothersome poor balance (although it's still a biggie), and more the way PN is making your life narrower and narrower.

Inspite of all that,
Cheers! 🙂
Ray (@ray666)

Next to pain, IMHO balance is the greatest problem of peripheral neuropathy. I have fallen and taken stitches. Fortunately no permanent damage. The biggest threat for me is stairs. I now take them one at a time. I don't care how many people I force to slow down following me down the steps. I think most people get an older person moving slowly. I also use railing or whatever available to hold on to. Add in that I just walk more slowly, aware I am more susceptible to falls. Longer term, physical therapy can improve balance. And certainly a walker or cane is likely in my future. My message- you must adjust.

@ray666 Well Ray, I'm glad to see your sense of humor is still intact. You said "one big exception: doctor visits" - yep, hits home with me. I have so many, I have managed (somehow) to group them into one week in any given month. This way, it doesn't screw up other weeks of the month. For many of us, the balance is a real issue. If I meet a friend, I always pick the place with easy parking, ground level, whatever I need to do for simplicity. If we can't control the PN, we need to control what we do because of PN. Use a cane, ramps to avoid steps if needed. Be safe but keep moving.

Good morning, Ed (@njed)

I also try to gang my medical appointments. I'm old enough to still keep my appointments on a paper calendar. Nearby, I have a cup full of pens, a number of them colored pens. Every time I book a new medical appointment, I grab a red pen and frame the appointment in red. That way all I have to do is squint at any given calendar page to see if I'm doing a good job of ganging my medical appointments. If I look at the page and see a sea of red I think, Damn, damn, damn, Ray, you've got to cancel some of these appointments. 🙂 Which I'm about to do right now: cancel a dermatology appointment I don't need. A little less red! Hurrah! –Ray

I am asking the same question. I am home confined because of my balance. I am afraid to fall. I am 80 and falling can be dangerous for me.

@cdianeb we’re ‘in the same boat.”I’ve basically resorted to what you’re doing. It’s nice to hear from someone who’s dealing with the same issue. Thanks.

@ray666 Treat yourself to thoughtfully applied PT therapy. PT can assist you to feel more in control of your balance as a start and from there begin to restore familiar activities which you long to renew. PN can be a disquieting battle to fight alone so I encourage you to connect with PT services if possible. Best Wishes on each of our mutual journeys.

Hi, @galliganwirth. I do PT regularly (weekly with a terrific therapist I've worked with for a good long while) and intermittently on my own. I'm a HUGE believer in PT! Thanks for mentioning it, though. Others will see your post and consider PT. One can only hope! Cheers! –Ray (@ray666)

Thanks for your feedback. Coming away from an adult onset diabetes treated unsuccessfully for twenty years you begin to wonder if anyone really understands
its etiology, both science and medicine isn’t sure. I took a left rather than a right turn or perhaps I inadvertently
brushed a Lilly pad on my way in. Take good care of yourself Ray.