Re: Detroit Here We Come!

[Guest guest]

Amy,

Make sure she consistently wears the braces through her growing up years and

does any stretching exercises they give her. In another 15 years she will be

glad she did! Living so far away from where they will be making the braces

could be a problem if a week or two later you discover the brace is putting

pressure on the skin someplace and causing pain or soreness and needs to be

adjusted.

[Guest guest]

Amy,

We make our 2nd trip to Detroit in 2 weeks. Dr. Shy and the entire team

are just amazing people and I truly hope that you find this visit as

wonderful as we did. Just a word of caution... when we discussed new

braces there, it would have involved final fitting and adjustments the

following Monday. We did not build that much time into our trip, we

could have done it because we drove, but it would have meant us driving

all night for me to be at work on Tuesday morning (a 10 hour drive).

Instead, I they gave my son and I detailed prescriptions and

instructions with phone numbers for the orthotist to call with questions

in order to have our orthotics and braces made locally. When doing that,

I had the incredible luck at Hangar Prosthetics and Orthotics by meeting

a CPO who had a personal interest and studies in CMT from his own life

experiences with people in his life with CMT.

At Wayne State, expect the usual conduction, agility, and physical

tests, but all done by caring and understanding gentle people. You will

have a LONG day, and it will be a full day. Long does not necessarily

translate into boring. We were doing something almost every minute. Make

sure you have something to keep everyone occupied during the

" downtimes. "

It is a give and take situation. As much as you are there for an exam

and help, you are there to help them. This is a research center. My son

participated in the Pediatric Scoring project where what could have been

a dozen different practitioners of varying disciplines had him perform

different tasks, stands, or activities and all taking notes on what

meant what, or how to score that, or that means nothing to me...

Incredible is all I can say! We both also had blood samples taken for a

study in Miami where they are studying the DNA contributions from the

non-effected parents between generations of the same family (like, what

difference is there between my son and I because of my wife's DNA

contribution to his DNA make up).

I also have to echo 's words... If they prescribe bracing, do all

that you can to make it routine and steady. I have a cousin with two

effected sons. One was not the best at the bracing and stretching, and

he had far more issues and needed surgery. The younger son wore his

night braces religiously, did his stretching exercises, and when I saw

him about a year ago, you would NEVER know he had CMT, right down to the

shiney dress shoes he had on with his suit, not like me who has actually

worn black sneakers with a tux! My own 16 year old just will not wear

his night braces or do the regular stretches. I can only nag so much, so

I am hopeful Dr. Shy, Carly, a, and the rest of the crew have some

success at lecturing him so I can back it up again back at home.

Detroit - I do not know downtown that well. We have spent our married

life traveling back there because my wife was born in Detroit and grew

up in a NE suburb. She still has a sister and brother in the area, so we

get to see family while in town. If you can travel around some, there is

a great Zoo there, Greenfield Village is an historical area with

changing displays. Immediately upon hitting town, my wife makes us go

straight to " National Coney Island, " basically a chili dog diner. Coney

Islands are chili hot dogs out there, not the potato, pepper, onion

deals we are used to when you live in the geographic region near the

REAL Coney Island. There are lots of Coney Island restaurants, but the

National Coney Island is the best, and very reasonable for very good

food! About an hour north on I-75 is enmuth. A neat little Bavarian

town. Shops, amazing food (Bavarain Inn family style chicken dinner is a

must for us when we go out there). On the way to the town is the

" World's Largest Christmas Store " called Bronner's. In downtown, there

is Greektown and of course, if you are a hockey fan, there is Hockeytown

- but you better be a fan of the Red Wings! There are casinos there, but

with a little one, they may not be in the cards for you.

Enjoy it, take notes, ask questions, give freely of yourself, be

prepared for the exams and for a long but busy day.

Mark