Limiting Jelly-leg Events Affecting My Balance

[Guest guest]

Hello All! I've got two questions, but first some background. I was diagnosed

at s Hopkins in 2008 with CMT. The type does not fit any of the known types

(according to the neurologist) but is most close to HSN (hereditary sensory

neuropathy) and appears to be found in my genes at least 3 generations. I

started having balance issues since I was about 35 yrs old...I'm 60 yrs,. now.

I have no dropfoot, no foot pain, and don't wear AFOs...just slight numbness in

the feet asnd hands. When outside the house I do use a cane. I just have

occasions where the balance gets so bad that all I can do is lie down for

several hours.

Now to the questions...

I have started to limit the number of " out of the house " activities in a day's

time to two! After two my walking becomes compromised and the legs get like

jelly. Twice a week one of those activities is my threadmill and recumbent

cycling at the Senior Center. I also attend church on Sundays, I go to the

store, I go to the grandkids in their weekly swim meets, etc. When someone ask

me to participate in an event I find myself looking to my calendar and counting

to two before I answer.

1. Does this make sense to anyone?

2. Will my balance ever improve or will the disease continue to progress to the

point where it's one or none?

-wheels