Re: Sharing CMT info with others

January 15, 2010

I agree with you, don't believe in being rude.

Geri

January 16, 2010

Hey gang!

It's me - that 'HNPP GUY' . I'm still kicking and have been following the post

although this is my first post for over two years.

years.

It's now been determined that not only do I have HNPP phenotype of CMT, but, it

seems I have another phenotype as well - yet to be determined.

As to the many posts about " can I see your legs, I just tell the person, I

should give up skate boarding! After all I'm pushing 65 now. Oh how time flies

by so fast. The response from the younger skate boarders I just get a blank

stare and whispers as I go off on my electric wheelchair.

For those that have what I perceive to have a sincere reason for asking how I

became wheelchair bound, it gives me a chance to talk about CMT and hopefully

educated yet another person out there albeit in the short form of explanation.

I just completed a lecture at my God son's high school health class (he's 17 and

a junior in high school). The students were very attentive and when it came to Q

and A time, only the instructor asked questions. I do believe seeing me there

in the class room while my God son was presenting his paper on CMT verbally,

made all the difference enabling a better understanding for the students about

CMT.

The game plan now is to start planning his senior year project which will be an

awareness program and fund raiser. He attends Stayton High School in Stayton,

Oregon. And I must say I was very impressed with the discipline and courtesy I

experienced while there. By the way, their term exams are next week and the

instructor told me in confidence there will be a few questions from my God son's

presentation. It felt good to 'feel the grass roots' once again. And, lest I

forget, he got 100% on his presentation. Makes a God father proud.

Ron " Naviguesser " Rood, Sr.

PS - I promise I will post an update of the progression of my disease. Should be

interesting reading - I hope - if not informative.

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