BEB=facial twich???


Posted by Nilda Rendino , Feb 19,2002,10:20   Archive
Log on to the Washington Post's Health section website (link below)if you want to foam at the mouth. Below is my email to the paper. Their email address is:health@washpost.com

I'd like to point out to Buzz McClain that blepharospasm is much more than "facial twitching." I recommend that he log on to www.blepharospasm.org. to learn what impact having perfect vision but eyes that don't open has on your life. Blepharospasm is involuntary eye closing. People with meige not only have blepharospasm but may involve the lower face, mouth, tongue, throat, neck and sometimes the respiratory system. Patients often have to go on disability if the Social Security Administration agrees (not an easy task to achieve).
Twice a year I try to get my notice of a support group meeting in the Virginia/D.C area for blepharospasm, meige and hemifacial spasm patients. I'm not always successful. Many doctors do not recognize these conditions when they see patients so an article the size of the one you ran "Botulism Becomes Me" would help a lot of people who would recognize themselves in the description. Please give us an equal chance.

Nilda Rendino
Eastern District Director
Blepharospasm Research Foundation
(409) 832-0788
email: bebrf@ih2000.net

Related link: http://www.washingtonpost.com/wp-dyn/articles/A30102-2002Feb18.html




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Re: BEB=facial twich???

Re : BEB=facial twich??? --- Nilda Rendino
Posted by Kelly Saffell , Feb 19,2002,10:33 Top of Thread Archive
When I was interviewed for the Ladies Home Journal article in April about the noncosmetic uses of BOTOX they titled my section "soothes facial tics". I was even called by an editor and asked if that was an accurate title and I said no. She agreed but obviously was overridden and it appeared anyway. Myself along with several others on the BB and my family wrote in and complained about the subtitle but I was told basically "too bad." We did not get any of the responses printed in the letter to the editor section.
Kelly in Dallas



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Re: BEB=facial twich???

Re : BEB=facial twich??? --- Nilda Rendino
Posted by June in Toronto (June Floyd,June in Toronto), Feb 19,2002,11:03 Top of Thread Archive
Thanks for the link, Nilda. Facial twitch indeed! Glad you e-mailed them - I'm going to as well.

June in Toronto who is a `Rabbit' according to the Chinese calendar, and I do `twitch' - but that's not all!




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Re: BEB=facial twich???

Re : BEB=facial twich??? --- Nilda Rendino
Posted by kathy , Feb 20,2002,04:35 Top of Thread Archive
Glad you picked up on this one , Nilda! I don't even know what to say about this article, except the superficialities of some people disgust me.



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Re: BEB=facial twich???..Twitch?Nilda

Re : BEB=facial twich??? --- Nilda Rendino
Posted by kathy , Feb 20,2002,09:55 Top of Thread Archive
Sorry, Nilda, couldn't resist correcting the spelling. But, i have known people with facial twitching or tics; do we know what causes those? i never asked them.



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Re: BEB=facial twich???

Re : BEB=facial twich??? --- Nilda Rendino
Posted by Alan Phair , Feb 21,2002,12:54 Top of Thread Archive
Nilda, I just read the article in the Post and I thought I would let you know that I sent them and Buzz Lightyear McClain an EMail telling what I thought about the "facial twitch" that I have. I told them also that most people with the disorder probably won't complain because their "facial twitching" prevents them from reading in the first place. I also told him them that I did not think it appropriate that they have people on their staff taking drugs not approved for the use they took it for simply so that they could write an article about it.....Alan




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Re: WASHINGTON POST ARTICLE - THEY WANT TO USE MY COMMENTS!

Re : Re: BEB=facial twich??? --- Alan Phair
Posted by June in Toronto (June Floyd,June in Toronto), Feb 21,2002,16:42 Top of Thread Archive
I, too, e-mailed Buzz McLean about his column and they are asking to use my comments in their Interactions Column. I have agreed but wish I could remember what I said to them:-) I'm sure its my usual about the medical use of Botox and the frivolous cosmetic use, etc. I hope they will let me know when it will come out - help me to look out for it please folks -my eyes are very bad right now - thanks!

June in Toronto




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Re: WASHINGTON POST ARTICLE - THEY WANT TO USE MY COMMENTS!

Re : Re: WASHINGTON POST ARTICLE - THEY WANT TO USE MY COMMENTS! --- June in Toronto
Posted by Alan Phair , Feb 21,2002,19:13 Top of Thread Archive
June, I just got a response back from them also and they want to use my comments in their interactions column. I only wrote to them several hours ago. I would suggest that as many people as possible send in comments immediately. I think that it might prompt them to do an article. I told them that if they wished, I could tell them some real human nature stories about what we people with "facial twitching" really go through.

I did give them permission to use my comments and they were not very nice although i think that I have a way with words sometimes that can get the message across and at the same time give them a little stab that hurts.

What do you say people, look up the link for the article and send something in. I sent it to the interactions column on their web site. ..Alan




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Re: WASHINGTON POST ARTICLE - THEY WANT TO USE MY COMMENTS!

Re : Re: WASHINGTON POST ARTICLE - THEY WANT TO USE MY COMMENTS! --- Alan Phair
Posted by June in Toronto (June Floyd,June in Toronto), Feb 21,2002,19:25 Top of Thread Archive
That's two of us now Alan - good show. I've reposted the link below - EVERYBODY PLEASE read the article and follow up with an e-mail about the medical use of BOTOX. We might get an article from all this asAlan suggested.

June in Toronto Related link: http://www.washingtonpost.com/wp-dyn/articles/A30102-2002Feb18.html




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Re: WASHINGTON POST ARTICLE - THEY WANT TO USE MY COMMENTS!

Re : Re: WASHINGTON POST ARTICLE - THEY WANT TO USE MY COMMENTS! --- Alan Phair
Posted by Delaine Inman , Feb 21,2002,20:06 Top of Thread Archive
Thanks Alan! I just read the article and saw the lovely after picture and emailed them....spilled my guts and got it off my chest brother! Hope everyone will flood them with email.



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Re: WASHINGTON POST ARTICLE - THEY WANT TO USE MY COMMENTS!

Re : Re: WASHINGTON POST ARTICLE - THEY WANT TO USE MY COMMENTS! --- Delaine Inman
Posted by kathy wray (kathy,kathy wray), Feb 22,2002,05:37 Top of Thread Archive
Where is the place you e-mail them? I've already said the superficiality, insensitivity and ignorance of some people disgusts me. in some ways this article pretends to be a spoof. If they don't know about us, they soon will and that will correct their ignorance, hopefully.

--modified by kathy wray at Fri, Feb 22, 2002, 05:38:03




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Re: WASHINGTON POST ARTICLE - THEY WANT TO USE MY COMMENTS!

Re : Re: WASHINGTON POST ARTICLE - THEY WANT TO USE MY COMMENTS! --- kathy wray
Posted by Delaine Inman , Feb 22,2002,09:26 Top of Thread Archive
I went to bottom of page and clicked on contact us and the email box came up. letters@washpost.com was address.



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Re: WASHINGTON POST ARTICLE - Computer froze

Re : Re: WASHINGTON POST ARTICLE - THEY WANT TO USE MY COMMENTS! --- Delaine Inman
Posted by Sally - in - Idaho , Feb 23,2002,13:15 Top of Thread Archive
I did that, too, Delaine (twice) but my computer froze up. Maybe it didn't want to be nasty right now. Will try again.

Sally in North Idaho




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Re: WASHINGTON POST ARTICLE -

Re : Re: WASHINGTON POST ARTICLE - Computer froze --- Sally - in - Idaho
Posted by Joann Humphrey , Feb 23,2002,19:28 Top of Thread Archive
I responded too. If anyone sees some new publicity let us all know.
Joann in Ark, who's ready for Spring.



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Re:can't remember what you said in email?

Re : Re: WASHINGTON POST ARTICLE - THEY WANT TO USE MY COMMENTS! --- June in Toronto
Posted by Delaine Inman , Feb 21,2002,20:20 Top of Thread Archive
I was able to print out both my emails to Time and Washington Post by going to my email and opening sent mail.



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Newspaper follow-up

Re : Re: BEB=facial twich??? --- Alan Phair
Posted by Nilda Rendino , Feb 26,2002,07:59 Top of Thread Archive
I hope Alan Phair is ready for the IRS to come after him as they examine his 1997 tax return. They printed his letter about his "facial twitch" in today's health section of the Washington Post. Thanks Alan. I'll keep after them. To read Alan's letter click on the link below.
Nilda
Related link: http://www.washingtonpost.com/wp-dyn/articles/A2155-2002Feb25.html



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Re: Newspaper follow-up

Re : Newspaper follow-up --- Nilda Rendino
Posted by June in Toronto (June Floyd,June in Toronto), Feb 26,2002,09:36 Top of Thread Archive
I'm so glad Alan's letter got in at least - my wasn't shown, although they told me it would appear. I have e-mailed the person who told me that to get an explanation and to follow up with others at the Wash,. Post. Thanks for the link, Nilda

June in Toronto (beb/meige)




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Re: Newspaper follow-up/Alan

Re : Newspaper follow-up --- Nilda Rendino
Posted by MaryNY , Feb 26,2002,20:42 Top of Thread Archive
Alan-Congratulations on your publication! And it IS a very good letter. Certainly should get some publicity and follow-up! Mary



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Re: Newspaper follow-up/Alan

Re : Newspaper follow-up --- Nilda Rendino
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Feb 27,2002,06:58 Top of Thread Archive
Great letter, Alan. But I thought that part of this whole brouhaha was that the FDA was approving Botox. And somehow i missed what drugs these guys were taking to write their article??

--modified by Kathy in Atlanta at Wed, Feb 27, 2002, 06:59:31




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Re: Newspaper follow-up

Re : Newspaper follow-up --- Nilda Rendino
Posted by Alan Phair , Feb 27,2002,09:58 Top of Thread Archive
Believe me Nilda. If you knew how much I paid in taxes that year, you would know I am not worried about any audit. If anything, I overpaid...Alan

P.S. I originally hesitated mentioning my financial situation but I thought that it would put it into a different perspective and get more attention to the fact that it(BEB) can happen to anyone. I also had asked that they just say that I was from Southern NH versus my nome town but they didn't comply. Now I will probably see my EMails double from people looking for financial help.

--modified by Alan Phair at Wed, Feb 27, 2002, 14:36:47




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Re: Newspaper follow-up

Re : Re: Newspaper follow-up --- Alan Phair
Posted by Sally - in - Idaho , Feb 27,2002,20:38 Top of Thread Archive
Right, Alan. I have a nice little bridge out here in the West that I'd sell you real cheap. And I could also use a loan to fix up the old outhouse ... half a mil should do it!

Thanks! Sally in North Idaho who wants to be first in line when Alan starts doling out.




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Re: Newspaper follow-up

Re : Re: Newspaper follow-up --- Sally - in - Idaho
Posted by Alan Phair , Feb 27,2002,20:54 Top of Thread Archive
Sorry Sally but I put in a little bridge last year but an outhouse....maybe. That reminds me of when I was in Vietnam. We had what you might call outhouses at the firebases. We used to build them out of used ammunition boxes. We used to take 55 gallon drums, cut them in third and use them for the containers. Because we had now where to get rid of the waste, we used to have to take turns burning it. I remember making a sign once and putting it up next to the "Laytrine" that said " You make it, we bake it". Now aren't you glad you mentioned that.....Alan




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Re: The Things We Learn

Re : Re: Newspaper follow-up --- Alan Phair
Posted by Sally - in - Idaho , Feb 28,2002,01:50 Top of Thread Archive
Oh the interesting things we learn on this BB!!!

Good Night.

Sally in North Idaho




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Re: Newspaper follow-up/Alan

Re : Re: Newspaper follow-up --- Alan Phair
Posted by kathy in Atlanta (kathy,kathy in Atlanta), Feb 28,2002,04:08 Top of Thread Archive
I think it was very brave of you to put it in perspective. If people could actually see us when we are in pain and those periods of blindness, noone would be laughing, except the very cruel.
The newspaper didn't comply with your address request? I think that's nasty.



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Don't hold your breath

Re : BEB=facial twich??? --- Nilda Rendino
Posted by Nilda Rendino , Feb 21,2002,20:32 Top of Thread Archive
Don't hold your breath on seeing the responses in the paper. They are sending that reply to everyone who has e-mailed them. The Washington Post's Health section, which comes out on Tuesday, is one of the best features of the newspaper. They did have information on a doctors'column in 1997 after I asked them to do something about blepharospasm. They had done an article about Diane Rehm, from National Public Radio. She has spasmodic dysphonia and has to be off the air for two weeks after she has receives her Botox injections.



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Re: Don't hold your breath

Re : Don't hold your breath --- Nilda Rendino
Posted by Alan Phair , Feb 21,2002,21:24 Top of Thread Archive
Nilda, they don't know me very well if they think they could get away with that after telling me they would do it. I am not the shy type and am not afraid of spending whatever it takes to get something done if I have to. I always go through the chain of command and would work my way up the paper until I got to the publisher after which the individuals down the line would have wished they took care of the article properly in the first place. All it takes are enough influential people to put pressure at the high level to get the articles taken care of. Believe me, having been there, one takes care of something real quick at that level as it is not worth the aggrevation to have to deal with someone who is persistant and can hit you in your pocketbook with bad publicity or cutt off of advertisements....Alan



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Re: CHAIN OF COMMAND

Re : Re: Don't hold your breath --- Alan Phair
Posted by June in Toronto (June Floyd,June in Toronto), Feb 22,2002,05:47 Top of Thread Archive
So if we have to resort to this, Alan, keep me in touch with who is who in the Washington Post and I will follow up and complain as well. We may not be able to see well, BUT!

June in Toronto




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Re: CHAIN OF COMMAND

Re : Re: CHAIN OF COMMAND --- June in Toronto
Posted by kathy , Feb 23,2002,09:14 Top of Thread Archive
I can't figure out how those pipsqueaks seem to know more than we do about this. And how are all of you finding these articles? Are you just looking under Botox or what?



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Re: CHAIN OF COMMAND

Re : Re: CHAIN OF COMMAND --- kathy
Posted by June in Toronto (June Floyd,June in Toronto), Feb 23,2002,13:24 Top of Thread Archive
Kathy, I belong to BEBRF and the Dystonia Foundation, so I get information on all dystonias. The magazine articles I found out about through Anne Brett of the Dystonia group - that group has a D-Mail once a month to (I think) 3200 people), and they also e-mailed this information about the mags and the young fellow, Stephen, who was diagnosed incorrectly (with MD) for 30 years when he really has severe generalized Dystonia! He has just had one DBS operation and is due for another one in a month. Cheers

June in Toronto(beb/meige)




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Re: CHAIN OF COMMAND/June

Re : Re: CHAIN OF COMMAND --- June in Toronto
Posted by kathy , Feb 25,2002,10:10 Top of Thread Archive
well, i guess I' m glad there is someone like you and others who can get this info from both boards to us. Good thing for Stephen, also.

kathy, who just found out the temperature is going to drop drastically here tomorrow and is hoping that is why her eyes are not behaving as they should.




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Don't hold your breath

Re : BEB=facial twich??? --- Nilda Rendino
Posted by Nilda Rendino , Feb 21,2002,20:33 Top of Thread Archive
Don't hold your breath on seeing the responses in the paper. They are sending that reply to everyone who has e-mailed them. The Washington Post's Health section, which comes out on Tuesday, is one of the best features of the newspaper. They did have information on a doctors'column in 1997 after I asked them to do something about blepharospasm. They had done an article about Diane Rehm, from National Public Radio. She has spasmodic dysphonia and has to be off the air for two weeks after she has receives her Botox injections.



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