PER: Thanx & Potpourri of comments :')

[Guest guest]

Hi all, thank you so much for the warm welcome!

Hearing Loss: My husband is deaf in one ear, and will attest to all the

previous comments about having to read lips, etc. I am urging him now to

contact Medicare about ability to get hearing aid. My 8 yr old son, also CMT1a,

talks loudly but currently passes hearing tests.

AFO's: Husband has worn bilateral AFOs for several years. His are plastic with

velcro fasteners and some amount of padding and molding for his feet. His

braces are hinged at the ankle to allow him to bend forward, however he

complains that a ramp or slope will put his knees in a real bind. Both his

knees hyperflex or " pop out " as he says. He is so used to the dislocations of

knee cap and knees that his knee joints are very loose, so the pain is less now

when it happens. He just dislocated his elbow last April in a fall, and now it

hyperflexes as well. My son wears " off the shelf " AFOs and is currently ticked

off at me, as he pinched his leg rather badly at school while sitting down.

MEDS: Husband gets strange " nerve / muscle spasms " a few times each year. This

month it has happened four times already. In previous years the MDA clinic

physician prescribed valium and vicodin. New doc recently prescribed neurontin.

Hubby says NOTHING helps, and he usually can't sleep at all. Sometimes a mix of

motrin IB and beer will put him to sleep, against my wishes. I strongly advise

NO ONE shoud try this remedy, it is a dangerous mix. Any info or experiences

with Neurontin would be helpful.

Have a great weekend!