Walk-aide and my son update

[Guest guest]

Hello Everyone:

Well, this is not good news about the Walk-aide. After 1 1/2 hours,

they could not get a response from Luke's right leg which seems to

be the most significantly affected of the two and the left leg only

gave a slight lateral twitch. The reps from Hanger concluded that

the system works " best " for people who have central nervous system

damage due to injury or disorders such as MS. Since CMT affects the

peripheral nerves this is the only conclusion they could come up

with.

I had tried the system at an exhibit last July and had no

response but thought that was because I am so much more progressed

than my son. He is studying to be a PT and says that it could be

that it works for patients whose myelin sheath is healthy so that

the electrical current can be " pushed " thru to send signals to the

brain.

His example was like if you had a waterhose that was clogged

you could send a burst of water that some might get past the clog to

the brain such as in a central nervous system problem, whereas with

a peripheral disorder such as CMT it would be more like the hose had

several holes for the water to just leak out of thus not reaching

the brain to register the signal.

I don't know, I just know it was really a disappointment for him and very

depressing. He struggles to accept CMT and not let it rule his life and suffers

from depression. If I'd had any indication that this wouldn't work, I wouldn't

have put him thru the ordeal of a half dozen orthotist trying to learn to use

this system with him as the " practice dummy " - his words, not mine. But we

won't give up hope that there is something out there someday that will help.