my NBC/KSBY CMT interview

[Guest guest]

Hello to all,

I just want to share that this morning was my interview with our NBC

affiliate for a story on CMT Awareness. I took my dogs and a friend and

we went to the KSBY news headquarters in San Obispo (California). I

sent the reporter quite a bit of CMT information ahead of time. We all

got in the KSBY truck and headed off to a nearby dog park where the

reporter, conducted my interview while my friend babysat my dogs. She

asked questions like " what do I want people to know about CMT " , " what

are symptoms to look for " then got to " how does it affect you " . I wasn't

too nervous or stressed, but I held up my hand to show my tremor, and

also showed one of my feet and explained the mild atrophy in my peroneal

muscle. The reporter even had those folding/canvass type chairs in their

vehicle, so we sat in the park and did the interview.

It was such a gorgeous sunshiny day in an area that has had fog and grey

skies for a month...

OK so then the camerman wanted me to walk the dogs. My dogs were such

angels, and I had no problem getting them to behave and walk the right

way. I was so happy and I did not get tangled in the leashes or trip or

anything. I took some special liver biscotti for the dogs and they were

too excited about this adventure to even eat their favorite snack.

Everything I worried about did not happen. The camerman also said he was

using a soft filter on my face (instant wrinkle remover!)

This CMT story will air Monday, June 30 on the 6:00 pm news on KSBY all

through the central California coast. The story will also be up on the

website, hopefully, if the producer agrees maybe end of next week. If I

see it I will let you all know.

When I was walking the dogs in the park, I was thinking of the day I was

9 or 10 and the orthopedist told my Mom and I that I had Charcot Marie

Tooth disease. In my childmind, all I could think about was " but I

haven't been swimming where there are sharks " . While I have had

struggles with CMT in my life, I never imagined I would willingly go on

broadcast news and not only talk about CMT, but my life and walk 2 dogs.

There were so many days in junior high I couldn't even walk myself to

the bus.

My only regret was that my Mom didn't live to see this...but my friend

who was with me was also a friend of hers, and I truly believe her

spirit was there.

I also thought more CMT Awareness. And, what if the 2.5 million people

in the world with CMT each went to their news and spoke about CMT, that

might increase awareness...just dreaming here, but I did it and it was

such a positive experience!

~ Gretchen

[Guest guest]

I was so happy to read about your interview. I wish we could see it here in

the Philadelphia area.

Joan

----- Original Message -----

From: " Gretchen Glick " <liliwigg@...>

" ers at groups "

>

>

> For a look at Rehabilitation Management of CMT, try this book

http://www.aicmt.org/books.htm

>

>

[Guest guest]

Hi Joan,

Thanks Joan, I wish everyone could see it. I am hoping the story will at

least get posted on the station's website. The reporter emailed late

this afternoon and now tells me I may be on the 5:00 news...so I have to

wait to find out more. I am wishing it could be a Webcast or somehow it

could be translated to computer...it was an incredible experience, FUN

too Gretchen

Dan Shelikoff wrote:

>

> I was so happy to read about your interview. I wish we could see it here in

> the Philadelphia area.

>

> > For a look at Rehabilitation Management of CMT, try this book

> http://www.aicmt.org/books.htm