Braces Update GOOD NEWS
 

Dearest NeuroTalk Friends,

As you know I have profound PN. Last month I got the new braces, which immediately helped me to walk comfortably again.

A month later, and I also see measurable IMPROVEMENT in my ability to walk without the braces.

The braces are allowing me to walk more normally, which is strengthening the muscles which were seriously atrophied.

I have physical therapy twice a week to improve the strength of my core muscles and to loosen the parts of my legs and thighs and hips which have become tightened as a result of the unusual stress caused by the gait I was forced to adopt by my PN.

I cannot believe that I am IMPROVING after all these years of going from bad to worse to unbelievably bad.

Profound PN is a nightmare, but I am waking up!

Just wanted to share my good news.

Hugs, ElaineD

Great news Elaine!
 

I'm so happy for you! :D

Great news....very heartening!

What Dr.?
 

Hi Elaine, I can walk about half a football field and the pain and weakness make me look for a place to roost. I have to concentrate to walk normally as my normal is to wobble from right to left like Captain Ahab on his peg leg. How did you find help? Is there a way to see if braces would help me? As I am now, I would have to load up on pain killers to do more. There has to be an evaluation process, right? Thanks Ken in Texas.P.S. Forgive if we have already had this talk.

Elaine
 

Hi Debi

"profound" is just an adjective that mean 'intense' - Elaine's way of describing her PN.

It's great she's getting some improvement from the braces. Hope you're still doing okay with your med changes.

Nerve damage from PN is described as moderate, severe and profound in the evaluation of the Nerve Conduction test results.

There are three major nerves in our legs:

Two of my nerves have NO response to stimulus. For all intents and purposes they are 'dead'. This is described as PROFOUND.

The remaining nerve is severely damaged.

Here are my testt results:

Findings: i. Markedly decreased amplitude of the right and left peroneal and tibial nerves. 2. Decreased conduction velocify of the right and left peroneal and tibial nerves. 3. Increased motor latency of the right and left peroneal and tibial nerves.
4. Increased sensory potentials of the right and left sural nerres.
5. Absent latency of the left peroneal and left tibial F-waves. 6. Delayed Iatency of the right tibial F-waves.
7. Delayed latenc-v of the right and left H-reflex.

INTERPRETATION: 1. PROFOUND AXONAL NEUROPATHY: RIGHT AND LEFT PERONEAL AND TIBIAL NERVES.
2. PERIPHERAL NEUROPATHY: RIGHT AND LEFT PERONEAL AND TIBIAL NERVES.
3. RIGHT AND LEFT SURAL NERVE NEUROPATHY.

Without my braces I can not walk 20 feet without resting. Every muscle in my body stays engaged and I stagger side to side, my legs cross without warning, my foot drags on the ground, and I am exhausted after a minute.

My legs were atrophying seriously. My knees were knocking and my feet were turning in.

I 'flunked PT' because I could not improve on tests no matter how long I trained.

I began to use a walker.

Then I thought of braces, did some research, and asked my neurologist for a referral to a company that provides prosthetics and orthotics. Braces are called orthotics.

My braces are ankle foot orthotics or AFOs.

https://www.allardusa.com/carbon-com...stability.html

This video of another person with a different brand shows how I can now walk:
https://www.youtube.com/watch?v=TGS_bS_cnBU

If you want to know more, just ask.

I should have done this SIX YEARS AGO when I had the first diagnosis. But I'm getting better now and that's what counts.

Hugs, ElaineD