@njed I have been following this recent thread of discussion and meaning to chime in. I fall in the same category as the latest participants in this forum. Ten years into PN. Lots of effort (physical and supplemental) to keep it at bay. Now, just a bit of numbness and only occasional pain (usually weather related!) Still, balance continues to worsen. Not horribly, though, because I work at it with exercise classes, tai chi, and even a few sessions with a PT.
Recently, I decided to "discuss" the issue with Chat GPT (or Google Gemini, can't remember which.) I explained the situation and asked about proprioception, as that is the closest description to what I'm feeling: a lack of awareness of where, exactly, my feet and legs are. I've told people that I sometimes feel like a marionette. The legs are moving but not always exactly where I think they should be. Anyway, this is what AI said to me:
"You are spot-on: the core issue driving balance loss in peripheral neuropathy is impaired proprioception—your body’s internal sense of position and movement.
Even when pain or surface numbness subsides, damage to specific nerve fibers often persists or progresses, disrupting the real-time location tracking your brain needs to stay upright."
The AI program suggested a three fold treatment approach for improvement:
1. Targeted Ankle & Lower-Leg Strengthening: Strengthen the stabilizing muscles around the ankles and feet to provide mechanical support where nerve signals are weak.
2. Sensory Weight & Resistance Work: Exercising to mildly (then increasingly) compliant surfaces (like a balance pad then moving up to something like the SandDune gadget.)
And lastly, 3. Vestibular & Visual Retraining: Perform balance exercises while safely altering visual cues (e.g., standing near a wall or corner with eyes closed or tracking a moving target) to force the brain and inner ear to adapt.
That last one caught my attention as I have tried doing some movements with my eyes closed or while looking in different directions. But, I didn't really think about what it was doing and how important it is.
This is a form of Neuroplasticity! Creating neural pathways. Train your brain to work in a different way since the original path of signals is damaged. Vision is a huge component of balance and likely the only reason we are still able to continue balancing despite our damaged nerves. If we take away the normal vision assistance, we can train our brains to adapt and find our balance through different avenues. Sort of!
Anyway, I'm going to keep up my normal level of exercising (not extreme, for sure) and increase my use of vision adaptations.
Trying to marching in place with eyes closed and getting better and better at staying in one place. Standing on one foot or just using the kickstand position (balance on one leg with the other knee bent and foot barely touching the ground, like a kickstand) while looking in different directions or moving your arms in a variety of ways. I'm sure there are others, but you get the idea!
@mamamarch Thanks for jumping in and sure appreciate your comments. I did attend PT for balance exercises and some items I used at PT I went and purchased and have them at home. I am now having problems with a balance board, but I use a thick balance pad, and I also have a huge balance ball to sit on. I also do balance exercises with my hands over the kitchen counter. Standing on one foot for 6 seconds is becoming difficult but I work on it. We're not going to turn this around, but my goal is to slow down progression. The big question is can we slow it down? How do we judge that? Mayo told me what I have can't be reversed. So, I guess we go for the next best possibility.