My Introduction

[Guest guest]

Hi I'm , female aged 35 from Indiana. My husband Tim (39) and son

(8) have CMT1a. My husband was diagnosed about two weeks before our son was

born, after having suffered with his feet being malformed for many years.

He finally found the right physician, and understands why his childhood was

full of pain, falls, and fatigue. Our son was diagnosed at age 3, and is

monitored via annual visits to the MDA clinic.

My husband wears bilateral AFO's on both legs. My son just recently

received AFO's (the off the shelf variety), and seems to be doing well. My

husband currently uses OTC pain med, with occasional use of a narcotic med

for muscle spasms. My son currently doesn't complain about the pain as much

as fatigue.

I myself have been tentatively diagnosed with Limb Girdle Muscular

Dystrophy, it is such an irony to spend years as the caregiver and then be

in this situation. I am also on the group for Limb Girdle MD, and of

course have lots of questions. Please forgive me now if I ever cross

reference the two diseases, there is so much to learn :')

My husband is disabled and on SSD. He has been able to spend a lot of time

with our son while I've worked, and for that we are grateful. We have many

questions about how CMT affects both children and adults. We are also

interested in results you may have experienced from therapy, braces,

surgery, and medication.

As I am the best typist, I will usually communicate with the group.

However, I can only continue to prod Tim in this direction. The interaction

your group offers is INVALUABLE to those of us seeking support, answers, and

even commiseration :')

Thank you all for your involvement and advice!

Brown