My Introduction

[Guest guest]

Hi -

Thank you for letting me join your group. I hope to learn from you, and

hopefully, I will have something useful to contribute every now and then.

My name is ; I just turned 52, and I live in New Hampshire.

I was diagnosed by a neurologist with CMT last week (New Years Eve). I am

scheduled for an EMG (electomyograthy) and nerve conductivity study Jan. 15. I

don't know what type of CMT I have, but I plan to find that out.

My sister was diagnosed with CMT about 4 years ago; so gradually, over the past

year or two, I've suspected that CMT is the cause of my trips and falls and leg

weakness.

For me, and for now, this disease is very livable; I can walk (but my feet

" slap " the floor); although after walking about 30 feet, I feel like I've walked

500 miles... Stairs are tough, but do-able, and my balance is askew (but I can

pass that off to being blonde

My Doctor recommends leg braces (AFO's?); that should make walking easier...

My biggest concern right now is my job, and my ability to DO my job. My job is

my life... (Never married, no kids; I'm dedicated to my work)

I'm a florist and have been in this industry for 32 years. I an am employee, not

an owner - and, as an employee, I am expected to be able to perform all aspects

of my job.

Being a florist is about 10% designing flowers and 90% work.... especially in a

high volume shop.

You are on your feet long hours (holidays are 12-13 hour workdays). No sitting

allowed - you are constantly walking to grab the phone, walking to the cooler,

climbing up a ladder, carrying boxes of vases, walking to the sink, walking out

front for a customer. Lugging buckets and boxes and vases and plants...

I can no longer deliver weddings - a big wedding might involve 10 - 20 trips

from the van, into the church, lugging boxes of flowers, and big urns of flowers

- up the flight of granite stairs... Or if the bride is dressing in a hotel -

many trips from the delivery van, to her room to bring the bouquets. If there

are centerpieces for the reception - you guessed it - many trips back and forth

from the delivery vehicle to the function area, centerpieces in hand.... ( i

feel the need to explain, because sometimes people think we just " play with

flowers " all day!)

I'm rambling, so time to stop. Thanks for listening -