[ElaineD]

Dear NeuroTalk friends,

As some of you will remember, I have profound PN in my legs and feet. It developed slowly over the years leading up to 2010, and stabilized. But the atrophy of my legs continued to worsen.

I had bought one of the nice walkers late last year (I had flunked PT earlier last year) because just going even 20 yards was exhausting. I had to walk along the walls in buildings and move from furniture to walls in the house.

Finally I thought of braces, investigated and found some that revolutionized my life.

And I asked for PT to maximize my results. I have been in PT twice weekly for the past two months, and once a week in April. I am almost through.

I have learned so much and the work has been grueling. And I haven't done my 'homework' as seriously as I should have. For that I have my reasons, of course, but part of it is laziness.

The biggest part is that I am old, and was so far 'gone' and had adapted to my disability so long by bending my body over, sticking out my rear end, looking at my feet and the ground, that adapting to the braces to get the maximum results is unlikely.

I URGE YOU TO CONSIDER BRACES AS EARLY AS POSSIBLE if you have PN that alters your gait or with foot drop.

I didn't understand that I should have started them as soon as I had the diagnosis in 2010. In the period leading up to having profound loss, I had so many other problems that I honestly didn't understand what was happening until I was already 'adapted to disability'.

I am still happy that I have 'my legs' back, and can do housework, for example vacuuming and mopping the floors.

But my therapist agrees that starting as early as possible is key to maximum success.

Hugs, ElaineD

[northerngal]

My braces make a huge difference in my life too. I am able to walk much easier enabling me to work, shop etc and lead a pretty active/normal life which would be impossible without them.
I am not able to run in them and going down steps is tricky with my feet being held up.
I use the carbon fiber ones with energy return, the energy return is great and really lessens the fatigue neuropathy can cause----it's tiring on all of my body when it had to compensate for the nerves not working in the lower legs.
My problem is I break them....as soon as it comes in I am going to try a new style called the "wishbone" hopefully since it has 2 places that it hooks to the footplate it will be stronger.
I haven't found any reviews or much info on here about it----its one that was suggested to me by the brace specialist at hanger clinic.

[ElaineD]

Originally Posted by northerngal

My braces make a huge difference in my life too.
I use the carbon fiber ones with energy return, the energy return is great and really lessens the fatigue neuropathy can cause----it's tiring on all of my body when it had to compensate for the nerves not working in the lower legs.
My problem is I break them....as soon as it comes in I am going to try a new style called the "wishbone" hopefully since it has 2 places that it hooks to the footplate it will be stronger.
I haven't found any reviews or much info on here about it----its one that was suggested to me by the brace specialist at hanger clinic.

DEAREST northerngal,

What is the name of your braces, and the manufacturer. I have AFO, Ankle-Foot Orthotics they are called. I wear the Blue Rocker from Allard. I would love to know which ones give energy return! I've only had mine since February of this year.

I find going down stairs very hard, because of the rigid foot plate, too.

I am so excited to find someone else in my 'boat'! Please, help me understand all of this. I found my Physical Therapist to be so helpful in explaining what the braces do and how they make most things better and some things more difficult. I had profound PN for so long and I'm 74 now, so probably don't do as well as you. But any encouragement is appreciated.

I didn't expect to be able to run, of course! Or ride a bike, or roller skate, or other things. But at least I can walk slowly through a museum, with rest stops.

I find my back muscles hurt in new places with the braces. My core is so weak, I have to work on it.

Please tell me about YOUR Braces and activities.

Hugs, ElaineD

[northerngal]

The allard blue rocker is a carbon fiber energy return brace. You should feel the energy return when walking
I think mine was made by Otto, it's very lightweight,comes to about 3 inches below my knees. I have broken numerous of them--at least 7, so I have to find a new brand. The company has a one year warranty and they won't warranty any more.
Hanger clinic, where I go, is suggesting a brace with two struts attaching it to the foot plate instead of one called the wishbone---hopefully it will be stronger.
I am on my feet a lot for work, but they mainly have all broke doing simple things, like stepping off a step, stepping out of my car, etc.
I am not able to run, ski, skate or any of those fun things, but they make it so i am able to do normal walking activities,housework, shopping,visiting, driving etc without tripping over my feet.
Sometimes at home I will go without them thinking it's better for my nerves/muscles---but I hate the slowness and how careful I have to be, so if I really want to get stuff done I just put them on.

[ElaineD]

Dearest Northerngal,

How far north?

Yes! I can walk again, and hate to take my braces off.

I didn't know about the energy return feature of my braces.

I'm 74, and don't work, and I've only had these braces two and a half months, so I've yet to break them.

Stepping down is the hardest part of course.

Have you seen pictures of the Dynamic Bracing system? I would love to have them, but they are $10,000 each.

http://dynamicbracingsolutions.net

Watch the videos.

Hugs, ElaineD