From The Moderators: A Positive Network

[Guest guest]

To all ers,

Just to remind you that the initial premise of was and still is

one of sharing what's Positive in our lives.

From our front page " Unique to is our experiental

sharing; " this is what works for me " ; all in an upbeat and positive

light. members develop a positive quality of life, provide

affirmation, encouragement, inspiration, HOPE, empowerment, and

practical suggestions. We share information gathered from the medical

community but MOST IMPORTANTLY we share personal discoveries and

insights that we've gained from living with CMT. We're here to learn

all about the complex, idiosyncratic nature of CMT. "

And " ... C.M.T. means " Can Manage This " ! "

Having said that again, please review why began as well as

about our rules for postings. (Both in our Files) It has been

disconcerting lately to find somewhat inflammatory messages,

especially those with no signature/name. While the Moderators (myself

and Rick) are certainly open to discussions, we ask you to please

respect the community, share your 'experience', and try to keep

posts as positive as possible.

As an addendum to my post on 'Dr. Shopping', I will add that doctors

always told my parents and I together everything they had to say,

with one exception at UCLA. As a 10 year old, hearing that I

had " sharko mary tooth " , honestly, I thought it had something to do

with sharks in the ocean when I was swimming with my friend .

(true story, read Funny Feet in our Files)

There wasn't any 'literature' on CMT at the time, there weren't

books, newsletters, magazines or the Internet and email. The use of

supplements had barely begun (at least for my docs) and was used

strictly for the problem I had with fatigue. My parents were wise,

yet had no support, no information, and did one heck of a damn good

job raising a child with CMT.

At age 27,(1979) a doctor told me that I would be in a wheelchair by

age 30 if I didn't continue in his trial and stick with the

medication. My mother was with me and heard this. We both cursed the

doc, stopped seeing the doc, and I vowed to get on with my life being

the best person I could be and doing the greatest amount of good. CMT

and all be damned! I didn't see a doc (other than an Internist 1X a

year) until I was 35, and hit hard by altitude sickness, which

mimicked symptoms of CMT progression. With adjustments, I rebounded

from that and was back to living fully.

There are kind, truthful, caring doctors; there are also doctors who

aren't. Trial and error got me to the first ones. Good doctors I had

gave me hope and tried to treat emerging symptoms to the best of

their ability. Doctors who were gruff or lacking in 'bedside manner'

were never seen again.

CMT affects each of us differently. We are all unique genetically,

with a CMT diagnosis and in general. We all have different

personalities and reactions to life's challenges. We are all also

beautiful gifts to each other from our creator, and have been given

special gifts to be honored.

I hope continues for many years, and one day there will be

thousands of posts about arrestment for the syndrome once and for all!

Thank you for respecting our rules and trying to keep postings

positive while here to share your experience of living a full life

with CMT.

Gretchen

Founder