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Topic: MONTEL WILLIAMS: I asked him to help us. (Read 1899 times) |
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SommelierCH
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MONTEL WILLIAMS: I asked him to help us.
« on: Mar 23rd, 2003, 8:25pm » |
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Well kids, this is my best shot towards finding a cure.
Mr. Montel Williams, an honorably decorated former navel intelligence officer, dined at the restaurant that I work at, last tonight (for those of you outside the US, “Montel” is a popular daytime television show, hosted and produced by Montel, that covers the gamut of human experiences). Mr. Williams and I have talked “wine” for several years. He is the most gracious celebrity that I have met (and believe me, I go way back… past: George Burns, Jimmy Stewart, Presidents, Royalty, et al).
Ever since I read that Oprah totally shined off (on?), the Clusterheads that tried to communicate with her, I thought that Mr. Williams would have a much more open mind. I wish I had been more prepared, when he came in last night. I only had this one copy, with me, of the info that I had given to my managers at work and posted on the employee bulletin board, during my last cycle. You can see my plea to him, scribbled in between the paragraphs (sorry girls, I scratched out my number). I apologize to Mr. Williams for “publishing” a private correspondence, as it were, but the Cluster family needs to know. This was the best I could do at the time. When he was away from the table for a moment, I handed him this page, and talked for several minutes about Cluster Headaches (totally unprofessional), mentioning that even the smallest segment on his show would be a great help for us. Considering the tragedy at Duke, where the girl received the wrong transplant, medical misdiagnosis MUST be newsworthy, and we are a bed of misdiagnosis’.
We must fight to get Cluster Headaches declared a “disease”. This is the easiest and fastest way to affect change at all levels; i.e. Government, Medical, Insurance and Employment. This would, also, open up Government grants and research money.
Alcoholism was declared a disease several years ago, and, by law, the insurance companies were forced to take notice and comply, as were the employers. After that, the bucks flowed. No pharmaceutical company can make money off of an “affliction” or a “syndrome”, but they can make money off of us, if we are a “disease”.
We must have an “attainable” goal to fight for, something concrete. If you tell a Legislator that you want a cure for Cluster Headaches, they will blow you off because it’s out of their scope. However, if you say that you want Cluster Headaches declared a disease, that’s a legislation procedure that they can deal with, this is something the general public and the media, can understand. THE CURE WILL FOLLOW.
Does anyone have a video of a Cluster Attack? Would anyone be willing to film one? If the nation could see what a cluster attack is like, on Montel’s show, I bet that the insurance companies will bend over backward to fill the Imitrex (Maxalt MLT 10mg or Zomig ZMT 5mg, for me), and the “cheapest solution”-- O2. Yes folks, Oxygen for all of us, insurance or not, free health clinic or HMO, they will have to give it to us, because the public will be appalled that they haven’t. Somebody has got to do it, for the group.
I ask you, my Cluster family, to support this thread and keep it at the top. Mr. Williams will be checking us out, and I am sure you know what national media attention means, any time that we can get it. Please let him know that we appreciate his consideration.
God bless our troops, may they also have PFDAN,
David J.
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amber
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Re: MONTEL WILLIAMS: I asked him to help us.
« Reply #1 on: Mar 23rd, 2003, 8:33pm » |
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Hey David
I hope this works, it would be nice for people to see this for once!!! I know that CNN didn't even mention clusters the last time they talked headaches.
I don't have myself on tape having an attack but there has to be someone who can film themselves. I live alone so it's pretty hard to get. Whatever you DO need however, let me know and I'll see if I can help.
It was really nice of Montel to listen to what you had to say under the circumstances. Did you send him to the ouch site as well? If he's serious about it his boyz'll do research I'm sure.
Good on ya!
Amber
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achinghead
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Re: MONTEL WILLIAMS: I asked him to help us.
« Reply #2 on: Mar 23rd, 2003, 9:09pm » |
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You want film??!! HUH.. I can give you all the screaming, crying, pacing, begging, slobbering, pounding,kicking, praying,fit throwing, summersaulting, running,strutting,backflipping,cussing and any other cluster pounding deamon making possessed looking film you want... just come over and bring your cam.. Im in the middle of my cycle now....
It is something that the public needs to be made aware of.. I can only remember the one time seeing it on television and I believe it was a tiny piece in a segment on 20/20 or something maybe about 6 or so yrs ago.
I sure hope somebody in the publics eye can help us!
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Edna
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Re: MONTEL WILLIAMS: I asked him to help us.
« Reply #3 on: Mar 23rd, 2003, 9:10pm » |
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Keep us at the top......that sounds wonderful to me.
What a wonderful thing you have done here David J..........and slight chance is better than nothing.
After suffering for over 25 yrs. with this dreaded disease of HA, it would be wonderful to be in the limelight so that people everywhere would KNOW about us...........that we are NOT migraine sufferers, it's called CLUSTER HEADACHES
It's astonishing to see how little is even mentioned about cluster headaches in the material my son studied in nursing. ONE SMALL PARAGRAPH!! He knew more, but goes to show how little comes our way in dealing with diagnosing our disease!!
Let's all hope that this is a big break that we here in this family need!
wishing nothing but pain free moments,
EDNA
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Georgia
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Re: MONTEL WILLIAMS: I asked him to help us.
« Reply #4 on: Mar 23rd, 2003, 11:26pm » |
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Nice job!! I am curious as to what Montel's response was. Did he seem open to your approach? Had he heard of them before? Did he give any mention that he would look into it or was interested in doing a show?
There was a person here not that long ago that made a documnetary on ch's. I believe his name was Ali. I think that Bob P has a copy of that tape. I don't know if there was a recorded attack in it or not. You can search the archives or contact Bob P. Maybe you could send a copy to Montel?
You did a great thing here. Let me know if you need any help.
PEACE NOW,
Georgia
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Charlie
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Re: MONTEL WILLIAMS: I asked him to help us.
« Reply #5 on: Mar 24th, 2003, 1:46am » |
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You're right kids. It is a good thing you have done. Montel needs to see us here....well most of us....to know what this horror is like. Nice going and good luck.
Georgia: I was about to make some kind of nasty post so you would reply. It's good to hear from you. It's that guy Den's fault anyway.
Charlie
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Mark C
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Re: MONTEL WILLIAMS: I asked him to help us.
« Reply #6 on: Mar 24th, 2003, 1:48am » |
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What a cool thing to do David...thanks. To show my apperciation I have a link that made me think of you when I found it.
[url]http://www.tcsn.net/rags/bum/
 [/url]
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juvy
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Re: MONTEL WILLIAMS: I asked him to help us.
« Reply #7 on: Mar 24th, 2003, 2:23am » |
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WTG David,
I'll keep my fingers crossed and hope this goes thru for the sake of sufferers everywhere.
I just woke up and the brain isn't fuctioning yet so that's all you get 
Cheers,
April
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SommelierCH
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Re: MONTEL WILLIAMS: I asked him to help us.
« Reply #8 on: Mar 24th, 2003, 3:20am » |
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Georgia—Montel was very open to my approach, he had no choice, I accosted him . He was very cool; I whipped out my page of info as he was coming back from the bathroom (Clusterheads on a mission have no shame) and he focused immediately on what I was saying, and listened intently. He took the page of info and said he would read it and look into it. I really didn’t give him a chance to respond whether or not he had heard of Clusters, I talk a hell of a lot more and faster, than I can write, and he had a table full of high-profile celebrities that he had to get back to (night before Oscar, you know). He is too much of a professional to promise a show segment on the spot—but, I can tell you that we got our big ol’ fuckeneh shoe in the door!! As far as I am concerned, that means it will happen. The important point is that we were not shut out, unlike a previous television host.
But, it will happen sooner if we help them with the preliminary research, to prove that a Cluster show is viable, and it’s shock value will increase viewer ship. Can’t you just imagine the ad promo’s leading up to the show? Can’t you just see the audience at the show, sitting dumbstruck, as they find out about us? Can’t you just hear them saying: “Oh my God! I had no idea that anything like this existed!”. We have to learn to play the game, if we are going to win. And we will win, one step at a time.
Bob P.—Do youze gots the tape?
It is now my personal goal to make sure this show happens. FUCKENEH!!!
David J.
P.S. Mark C, LMAO. I guess that the lower alcohol content of “Annie Green Springs” keeps it out of the running. At least two of those are made by Gallo, as is the Peter Vella box wine that I am drinking right now.
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SommelierCH
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Re: MONTEL WILLIAMS: I asked him to help us.
« Reply #9 on: Mar 24th, 2003, 5:19am » |
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WE WILL NOT GIVE UP! Here is a way you can help.
OUR NEXT STEP: Since, at this early stage we are lacking video of a Cluster attack, I have another simple idea. I would like to compile some posts and threads off of our message board and archives into a Booklet, to send to Montel (and eventually others), which will graphically and heart wrenchingly tell our story, in our own words: “Dances With The Beast—Living with Suicide Headaches” (I love the dichotomy of “Living” and “Suicide” in the same line, we are some tough SOB’s). If there are, eventually, profits from the Booklet, all proceeds go to OUCH.
The beauty of this plan is that the Booklet has already been written, it just has to be put together. Since all the posts, were posted, knowingly and proudly, in the Public Domain, for any and all of the world to see, there are no copyright problems. But, who would object anyway? It’s for the cause.
All of us have told our story here—now it’s time to make it count for something!!! “NO PAIN, IN VAIN”!! (Damn, I like that one, too)
Here are the categories that I have mapped out, for the different posts, to be included in the Booklet:
How we support and love each other.
The strength of the Supporters (you are angels for all of us).
Short bio’s of personal hell.
Hassles with Doctors.
Hassles with Insurance.
Hassles with Employers.
Definition of our pain.
How we deal with our families, how our families deal with us.
Remedies we’ve tried, to relieve the pain.
Scripts given for meds that do nothing for CH.
Meds that fuck up your life.
Financial burden of CH.
The recent post where jonny responded with: “I beg to differ with you.” I still ROTFLMMFAO!!
Heartbreaking posts, that still make us cry.
Heartwarming posts, that still make us cry.
The fact that people have found better relief from their pain, from a lay group of anonymous strangers, than they have from the trusted Medical Community, posts.
Any life-threatening misdiagnosis’.
Suicide.
If there are any editors, writers, or hell, anyone who can just read, out there—or a bunch of ‘em—who can help coordinate this—JUST JUMP ON IN!!
We have 19 categories. If ten people would search for the best posts or threads in just 2 categories each, we could whip this out in no time. 20 people is like a Cray computer (yea, yea, I know that I’m dating myself. But, I’m not kinky, I don’t tie myself up first).
I feel in my bones, that this is a major window of opportunity for our Cluster family. I am a Clusterhead, filled with righteous indignation at how my sisters and brothers (and me too, damn it) are treated. I will not take “NO” for an answer, anymore!
Let’s band together, and get something done. FUCKENEH!!!
David J.
P.S. Wish me luck, the “Sommelier of the Year” (CA) awards banquet is tonight.
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catlind
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Re: MONTEL WILLIAMS: I asked him to help us.
« Reply #10 on: Mar 24th, 2003, 7:25am » |
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Good luck with sommelier of the year David!!!!!!!!!
I think it's awesome that you've done this! You rock bro! I'd volunteer for video but my head is being too cooperative to general quality of life and is only pestering me with minor break through low kip headaches hehe.
There is one aspect to this that is a definite viewer appeal right now too. Military members and families that suffer. There are a multitude of us here. If we can be sure to include that aspect, under the current world circumstances, it may draw an even bigger audience.
Do you think he would be interested in the convention?
I may send letters to the Dr's invited to speak and tell them that we are actively seeking national media attention and maybe that will get them to speak! Just running some thoughts in my head on the board.
Cat
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Woobie
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Re: MONTEL WILLIAMS: I asked him to help us.
« Reply #11 on: Mar 24th, 2003, 9:31am » |
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Way to go David! I hope it pans out!!
As far as message board topics to print out... the one I remember the most is the SUICIDE one by DTruett. (where is he by the way??? is he still here??).
That's the best one. Ran the whole way from suicide, to meds, to the love everyone has here, ways to cope, family problems, doctors screw ups.(when his dr gave him contraindicated meds and he went into a coma.. ) .... the pain and utter frustration of it all, and the love here..
That's the perfect thread!! There's like a bagillion replys.. but .. it's one i remember well.
If I had to pick ONE.. that would be it.
Tina 
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| « Last Edit: Mar 24th, 2003, 9:51am by Woobie » |
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maggie_may
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Re: MONTEL WILLIAMS: I asked him to help us.
« Reply #12 on: Mar 24th, 2003, 9:39am » |
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David,
I think what you are doing is wonderful. All the pain and suffering that we go through - sometimes on a daily basis - absolutely has to be made public. People have to be aware that this extreme pain does exist. And you're right. Sooner CH is brought to the public's attention, the sooner it is to getting classified as a REAL disease, sooner it will be for us sufferers to get better help from doctors and insurance companies, cheaper (one can hope) and easier access to the meds that we need!
I'd love to help out. I'm currently leaving a cycle (I hope  ) so I don't think I could help very much with the video tape. BUT I am an editor and would be more than willing to help out with any work that you would need done - just drop me a line.
Great job here 
maggie
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| « Last Edit: Mar 24th, 2003, 9:41am by maggie_may » |
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marty
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Re: MONTEL WILLIAMS: I asked him to help us.
« Reply #13 on: Mar 24th, 2003, 11:27am » |
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David..
Good job!
Lots of Jill's writing on its way to you via e-mail, neighbor owns a digital video camera that I can use and Jill has agreed (I guess that this time I won't stop her from banging her head)
Marty
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Edna
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Re: MONTEL WILLIAMS: I asked him to help us.
« Reply #14 on: Mar 24th, 2003, 1:24pm » |
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GEEZ Marty......you da man.......you read my mind and what I wanted to suggest here before I could even get to post it!!!!!!
David, I think we have TWO of the best people with prime examples of both what we suffer......and how we act with one another.
Jill has suffered hell for over a year now, is still in the head banging stage........her parents have come around......Marty is her godsend........she is young and at the age that many of us have started with ch........
and then the wonderful story of how she was brave enough to accept Marty's help.........
AND to top it off, Marty - - - the wonderful person who has given his all to helping Jill - - -
What you say everybody.........thinking these 2 ppl would go a looooooong way to represent us chers.
What you say Jill and Marty........I think I'd like watching you two, plus whatever others of us it takes to make the Montel show.
After all, anyone who watches any of Montel's shows knows how it runs, he listens well and also tells it like he sees it when needed!!!!!!!!
WOW, David think you've gotten us onto something here.
EDNA
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cathy
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Re: MONTEL WILLIAMS: I asked him to help us.
« Reply #15 on: Mar 24th, 2003, 1:54pm » |
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Hi David...glad to see this post, as you know Wes has agreed to let me video him again when he's next in cycle...although I hope that won't be too soon... , got a friend who works within the BBC going to email her and see if we can get some publicity this end too...will keep you posted....
Cathy & Wes
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marty
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Re: MONTEL WILLIAMS: I asked him to help us.
« Reply #16 on: Mar 24th, 2003, 1:57pm » |
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eDna..
nO enGlish speeek i.. tV noo goood
(But Jill does) ;D
MaRTy
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Linda_Howell
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Re: MONTEL WILLIAMS: I asked him to help us.
« Reply #17 on: Mar 24th, 2003, 3:22pm » |
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David, (bringing this to the top again)
Montel Williams is one of the most caring individuals on T.V. and how great it is that you were in a position to accost him......LOL You're correct that we have no dignity when it comes to these headaches.
Yes, Jill has agreed to have herself video-taped, but if she decides not to, I will. Since I am chronic, it's just a matter of waiting an hour or two for one to hit, so count me in. No one wants their pain exposed, but if it is for the cause of educating people on these horrendous headaches, then it's for the good.
I have seen the tape Aki made and NO.......even though it was a very good educational tape, no headache was shown.
Linda Howell
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hdbngr
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Re: MONTEL WILLIAMS: I asked him to help us.
« Reply #18 on: Mar 24th, 2003, 3:44pm » |
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David:
Docs were always asking me to describe what a cluster headache was like. We couldn't seem to convey how bad they actually were, so my husband taped a few "episodes". The real bummer came when those same Docs wouldn't watch the tape. We brought it to several appointments, and waited until they asked what happened, then said "let us show you".
They seemed embarassed and said it "wasn't necessary". Eventually, I erased it, because I couldn't watch something I already live, and hated having evidence of it in the house. It was one more brick in the wall of sadness and resentment I have found in trying to treat these things. They not only don't understand, they don't WANT to know.
Make some tapes, everyone. I bet if there was a camcorder rolling the next time someone went to the ER, there would be better treatment, too.
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Re: MONTEL WILLIAMS: I asked him to help us.
« Reply #19 on: Mar 24th, 2003, 4:02pm » |
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Back David up everyone!
Go to:
http://www.montelshow.com/show/tell.html
Maybe if there is enough traffic, they will put David on the show!
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Virginia
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Re: MONTEL WILLIAMS: I asked him to help us.
« Reply #20 on: Mar 24th, 2003, 5:11pm » |
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David-
This is so awesome! Thanks for having the guts to get in Montel's face for us! It's nice to know that not all celebrities act like total jerks around the "common man".
I've only seen a tape of cluster a few years back on 1 of the news programs (probably the same one that everyone else has seen).
I would also be willing to help with the editing and research. Please let me know what I can do. I agree, I think the Marty-Jill story is a great one to tell.
David- good luck tonight, I wish you the best...I have to be honest with you I didn't know what a sommelier was until this past weekend. There's a new show on the TLC network called "Faking It" and Friday night's show was about a beer-guzzling champion who over a 3 week period trained to be a sommelier. It was really interesting. All of a sudden, the light bulb went on
and I figured out what your user name meant. DUH!!
Obviously, I rarely eat at the finer restaurants!!
Virginia
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Re: MONTEL WILLIAMS: I asked him to help us.
« Reply #21 on: Mar 24th, 2003, 6:06pm » |
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David,
Good One.
Hope this works out. I was onced interviewed on Canadian TV (CBC) about CHs, with the primary goal of inciting the provincial governments to pay for oxygen use. The file is still on the health minister's desk. The CH community in Canada has recently submitted a petition, but still no word.
I am certain that having Montel speak about CH would be good, no doubt. However, I wouldn't expect any major progress out of one TV story. If we really wanted to get our acts together, we could mail out packages like the booklet you are putting together plus other materials to every major newspaper and magazine in the in the US and Canada (to begin)...
It would be the grassroots.CH awareness campaign.
Just a thought.
Good Luck.
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WendyHowe
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Re: MONTEL WILLIAMS: I asked him to help us.
« Reply #22 on: Mar 24th, 2003, 6:13pm » |
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David
Good luck for tonight and what an opportunity with Montel Williams. It won't just be America if you succeed as I think the show is sold all over the world.
Huge luck on both counts
Wendy
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Darleen
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Re: MONTEL WILLIAMS: I asked him to help us.
« Reply #23 on: Mar 24th, 2003, 7:06pm » |
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Hey David,
I just sent off a message via Montel's webpage about clusters and that we would love if he would do a show about clusters. I guess we will just have to wait and see now.
D 
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Jill
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Re: MONTEL WILLIAMS: I asked him to help us.
« Reply #24 on: Mar 24th, 2003, 7:51pm » |
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Hey all...
Just wanted to let you know that the tape was made this afternoon, successfully.
I hope that the tape helps and I was just wondering if, since we all react to the beast differently, would it be better to have more than one tape? Since Linda has also offered, we have two there - just a thought
Guess that that is all. Great work on this, good that someone stepped up and took action and Montel Williams is the one for it!
Thanks for the kind words as well, on Marty's and my behalf.
Jill
Oh and dont let Marty fool ya - he is a Swede and always claims how brilliant they are! 
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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."
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