I have an idea


Posted by Christel-California , Aug 16,2001,18:07   Archive
I had the thought to send Oprah one of our cookboods with yet another letter, as well as an information package from the BEBRF. Since she never responded to any of our e-mails, as far as I know, perhaps this will evoke a response. What do you all think about this?

Christel suffering from triple digits




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Re: I have an idea

Re : I have an idea --- Christel-California
Posted by Edith Nalepa (edith nalepa,Edith Nalepa), Aug 16,2001,19:42 Top of Thread Archive
Hi. Christel, I think that is a wonderful idea to send Ophra one of our wonderful cook books. They are so good, I have ordered 4 more to give to family members as gifts. Edith in Ohio where it is raining.



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Re: I have an idea

Re : Re: I have an idea --- Edith Nalepa
Posted by Christel-California , Aug 16,2001,22:24 Top of Thread Archive
Thanks Edith,
Those books do make nice gifts, it's what I'm using mine for, especially since I'm really bad at selling anything.
To make Oprah a gift is not the reason I'm contemplating sending her a book, rather to try to get her attention once again.
I don't recall if you were with us at the time we all sent her e-mails at the same time, explaining that Botox is not just used for cosmetic purposes, but helps hundred of thousands with neurological disorders, hoping she might take this up as a topic for her show.
With a forum such as the Oprah Show, thousand of us could be reached, who are still running around out there from doctor to doctor with mounting frustration getting the "it's all in you head" song, like so many of us did for years. And not just in this country.
I was merely wondering if it's a waste of time.
It would have been nice if Oprah (her staff) could have extended the courtesy to at least one of us, explaining why they wouldn't consider this topic for her show.

Christel in Ca. where we could use some of your rain




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Re: I have an idea

Re : Re: I have an idea --- Christel-California
Posted by June in Toronto (June Floyd,June in Toronto), Aug 17,2001,08:44 Top of Thread Archive
I think its a great idea, Christel. I haven't received my cookbooks yet but, if they are as great as they sound, I think Oprah would be delighted to get a copy and it certainly would let her know we are not just a small bunch of folk with this condition - but a research foundation with thousands of member patients. The Dystonia foundation is also located right in her neck of the woods - Chicago. I'm also amazed that she didn't respond to one of our many e-mails or also to the `Woman's Health on the Internet' responses we sent in. Go for it and good luck.

June in Toronto




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Re: I have an idea

Re : Re: I have an idea --- June in Toronto
Posted by Christel-California , Aug 17,2001,09:48 Top of Thread Archive
June, I think I will, have to request an information packet from the BEBRF first. What have we got to lose giving it another try, right?

Christel enjoying the cool morning air




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Re: I have an idea

Re : I have an idea --- Christel-California
Posted by kathy , Aug 17,2001,11:10 Top of Thread Archive
i think it's great Christel. i'm tired of hearing about everyone's hollywood wrinkles when we have so serious of a disorder.



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Re: I have an idea

Re : Re: I have an idea --- kathy
Posted by Christel-California , Aug 17,2001,23:26 Top of Thread Archive
Kathy, you are right, seen from our perspective the Hollywood Wrinkes are a bit tiresome and although many use Botox because of vanity, I think many more need it for professional survival and not just in the movie industie. We do, after all, live in a youth-oriented society and image seems often more important than substance.

Christel




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Re: I have an idea

Re : I have an idea --- Christel-California
Posted by Kelly Saffell , Aug 17,2001,16:25 Top of Thread Archive
Fantastic idea! Maybe that would get her attention. I have sent her the Ladies Home Journal article about botox that I was interviewed for as well as a video of the local Fox News 4 Your Health report that I appeared on in May here in Dallas along with my neuro explaining dystonia and botox but have gotten no response. I had also included a letter explaining my personal situation (young, received botox during pregnancy) along with some copies of others stories (names blacked out) from the Patient Stories books describing the insensitivity and lack of knowledge of many doctors ("you're just bored and need to get a job"). We have all fought a hard fight and don't give up easily!!

Kelly in Dallas




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Re: I have an idea

Re : Re: I have an idea --- Kelly Saffell
Posted by Christel-California , Aug 17,2001,23:34 Top of Thread Archive
Kelly, after reading your post and all you've done to get Oprahs attention, I seriously doubt that mine is such a fantastic idea.
It's pretty discouraging.

Christel in Ca.




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Re: I have an idea

Re : Re: I have an idea --- Christel-California
Posted by Kelly Saffell , Aug 18,2001,15:08 Top of Thread Archive
I doubt she gets many cookbooks sent to her so maybe this would be just the thing to catch someone's eye. I think you should do it!



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Re: I have an idea

Re : Re: I have an idea --- Kelly Saffell
Posted by Christel-California , Aug 18,2001,17:22 Top of Thread Archive
Kelly, I decided I will do it. What have we got to lose? But just in case it doesn't work, we should think of what to try next.



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Re: I have an idea

Re : Re: I have an idea --- Christel-California
Posted by June in Toronto (June Floyd,June in Toronto), Aug 19,2001,12:26 Top of Thread Archive
We could always send along photos of some of us trying to cook - like when I have to wear my ski goggles to cut up onions to stop the smarting of the eyes:-) OR photos of Shirley's operation - now that would surely grab Oprah's attention wouldn't it?

June in Toronto whose minister at the church today spoke about depression during the Sermon (the Psalms) and it seemed aimed at me!

--modified by June in Toronto at Sun, Aug 19, 2001, 12:27:10




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Re: I have an idea/Christel

Re : Re: I have an idea --- Christel-California
Posted by June in Toronto (June Floyd,June in Toronto), Aug 19,2001,12:48 Top of Thread Archive
Perhaps a mention of the 20/20 show, which was about a rare form of dystonia (generalized) could be mentioned also. Our beb and meige conditions are focal dytonias after all.

June in Toronto




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Re: I have an idea

Re : Re: I have an idea --- Christel-California
Posted by Cynthia , Aug 19,2001,15:53 Top of Thread Archive
If the cookbook doesn't work, why not a sample of the "real thing"? Looks like many of the recipes could "mail well".



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Re: I have an idea

Re : I have an idea --- Christel-California
Posted by Sally - in - Idaho , Aug 17,2001,23:48 Top of Thread Archive
Christel, I think it is a super wonderful idea!! Most everyone enjoys cookbooks and can relate to them, and from what I've heard, this one spells out our disorder in simple language. It just might be the gold ring of the merry-go-round that catches Ophrah's eye ... or that of someone on her staff.

Now, don't get discouraged! What Kelly sent is great too, but it is entirely different from what you are suggesting. It is obviously going to take all sorts of "teasers" to get the interest of influential persons.

I get my Botox injections next Wednesday and I'm curious to see whether my neurologist bought any cookbooks. He had told me he would, and I made up an order form and sent it to him as soon as they were announced as being ready for shipment.

You might enclose just a brief letter of why you are sending the book and information packet. You write such nice letters, that I know you can do it. Good luck!

Sally in North Idaho where we cooled down to 90s today and are supposed to get down to 80s next week. We're getting some smoke from those terrible fires in east central Washington. So sad.




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Re: I have an idea/Getting Oprah's Attntion

Re : I have an idea --- Christel-California
Posted by June in Toronto (June Floyd,June in Toronto), Aug 18,2001,09:50 Top of Thread Archive
Christel, just a thought. How about getting Oprah's attention with the cookbook by telling her that this was created by people who can hardly see at times, let alone cook - and yet look at what we have accomplished? Perhaps just a straight explanation on beb/dystonia is too `ordinary' for her show - maybe she'd have all of us on there, cooking up a storm, eyes slamming shut because of the lights, wearing visors and dark glasses - what a hoot!

June in Toronto

--modified by June in Toronto at Sun, Aug 19, 2001, 12:22:02




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Re: I have an idea/Getting Oprah's Attntion

Re : Re: I have an idea/Getting Oprah's Attntion --- June in Toronto
Posted by Christel-California , Aug 18,2001,13:04 Top of Thread Archive
Good idea, June, I'll have that at the top of the letter I intend to write.

Christel in Ca.

--modified by Christel-California at Sat, Aug 18, 2001, 13:05:48




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Re: I have an idea/Getting Oprah's Attntion

Re : Re: I have an idea/Getting Oprah's Attntion --- June in Toronto
Posted by Sally - in - Idaho , Aug 18,2001,14:06 Top of Thread Archive
What an "eye catching" suggestion, June! It just might work. Really lay it on thick, Christel ... Us stumbling around trying to hold one eye open so we can see while we stir or open a can or slice what should be thin slices of meat for sandwiches into thick slabs or end up pouring a glass of juice all over the counter when we miss the glass ... the list is endless.

Maybe we should try some others, too, such as Diane Sawyer. She seems to be on a number of programs from GMA to Prime Time to other specials.

Let's keep thinking.

Sally in much cooler North Idaho




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Re: I have an idea/Getting Oprah's Attntion

Re : Re: I have an idea/Getting Oprah's Attntion --- Sally - in - Idaho
Posted by Christel-California , Aug 18,2001,18:17 Top of Thread Archive
Sally, you've got me laughing again. Maybe you should write that letter, I'm sure you'd do a much better job.




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