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   Author  Topic: Famous people with CH  (Read 18429 times)
RichardN
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Re: Famous people with CH
« Reply #25 on: Apr 20th, 2008, 8:06pm »
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Well . . . I was almost there guys.
 
  About three months after finding this site . . . and (finally) getting some control after 13 months of daily, multiple attacks . . . I had a film audition for the fourth lead (behind Jude Law, Nicole Kidman, Rene Zellwegger (sp?))
 
  My only audition tape (for Screen Gems) was good enough for a director call-back . . . and he didn't even want me to "read" again.  Just a chat, discussed some things on my resume . . . . that's when I shot myself in the foot.  On my resume I list CH and a "limiting skin condition (EB)".  When he asked about this . . . I couldn't keep myself from going into a full explanation of CH and extoaling the virtues of 02 . . . . when I should have been using that limited time talking about the character (which I had down cold . . . and yes, I would have tried to talk the director into giving him clusters . . . could've worked).  Basically, I gave them concerns about my ability to function.  Films are incredibly expensive . . . every minute of a shooting schedule (and all involved) costs many $$$.
 
  Had I not found this site, I wouldn't have been able to consider the audition.   And then, I couldn't shut-up about it . . . an unfortunate messianic compulsion I have when there's a possibility I have the "answer" to another's problem.  There were only 2-3 other actors up for the role . . . and yes, I would've produced a more memorable character . . . that may be immodest . . . but it's true.
 
  A bit of trivia about Cold Mountain (the film in question).  I had to get a passport because all the snow scenes in the movie were shot in Romania (there's not a lot of snow in the Carolinas in August/September . . . Screen Gems has  sound stages in Wilmington).  So, it was just the principles and crew that went to Romania (for a month).  That job . . . and subsequent residuals would have gotten me out of debt and built a house.  The second time I've come VERY close to "the big time".
 
  So . . . if there are any film (sorry . . . don't have the stamina for stage anymore) directors/producers out there . . . pm me and I'll send you a copy of my resume  Wink
 
  Be Safe,   PFDANs
 
     Richard
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Re: Famous people with CH
« Reply #26 on: Apr 20th, 2008, 10:45pm »
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Richard,  
you're already a STAR in our eyes Kiss
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Dee
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Re: Famous people with CH
« Reply #27 on: Apr 28th, 2008, 12:23am »
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Hi Folks,
I'm not really new here, I just don't feel comfortable "posting", would rather read... you all have so much to give, and have saved me without even knowing (Thanks for everything)!
Anyhow, if one of you budding authors were to write a book titled "Suicide Headaches", expound on some of the gory details, then follow-up with the resolution many of us found in dealing with the beast, viola!  The title would catch anyone's attention.  It's a "Victim TV" hit... the kind of book Ophrah loves!!!
Just a thought.
Again, thank you all, foreverything, forever,
Dee
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Re: Famous people with CH
« Reply #28 on: Apr 28th, 2008, 1:19pm »
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In regards to getting the word out in the media: I have some suggestions.  
 
Being in marketing I would say that you are always on the right track if someone famous has a "condition", usually it's out in the open and then they have a foundation and money and attention gets to the cause. Then they have a media frenzy and PR people propelling the cause.
 
However, since nobody of any celebrity has made this known to a level of attention, I would say it will take this entire community to work together to make it happen and be our own PR.
 
The media news is usually circulated information that starts somewhere and evolves through constant pushing by the people behind it. An example is a missing person. It will get attention once or twice but its the family behind it that make it constant news. Without the pushing of the family being seen and heard, the missing person unfortunately just becomes another statistic. There's thousands of people missing, yet only a few continually hit the evening news.
 
I think the objective is to get CH attention so that ultimately a cure could be found but more realistically to help others who do not know about this support board, for those who have been misdiagnosed and unaware of CH, those who have not seen a professional and do not know what CH is and to get health professionals educated on how to diagnose and treat this condition.
 
For the most part, media writers are looking for stories. They get stories from people. They don't have a list of things to write about. I would start by seeking out a key health writer in the USA today, New York Times, Chicago Tribune and others. Have one person write to them and have the rest of our group follow up with words of encouragement to see our support group and write about us. Imagine getting hit with a thousand e-mails with the subject line reading CLUSTER HEADACHES!
 
One, two or three people and 1, 2 or 3 media outlets doesn't make a splash. A thousand people does if you do it in a professional way. 50 media outlets makes a splash. It will get written about. Continue to push as a group and it will get talked about and then it will be seen on the local news, then to to the National news and then it will be added to every regenerated migraine story that the news constantly talks about.
 
It's not about getting one story done. It's about getting our group to push push and push to get 100 stories done. It takes dedication to make something happen. It would require everyone on this board to participate somehow.  
 
I would like to hear everyone's thoughts..
 
FK5
 
 
 
 
 
 
 
 Smiley Smiley
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andrewjb
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Re: Famous people with CH
« Reply #29 on: Apr 28th, 2008, 3:52pm »
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Smiley, count me in FK5, sounds as though you've the brewings of a plan. i'am in the uk, not sure it matters in this global age. andrew.
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Re: Famous people with CH
« Reply #30 on: Apr 28th, 2008, 9:37pm »
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it was in the local paper here in cleveland. dr. donahoue or something like that. and i like the book idea. It was so hard for me to even try to explain this to my sister, honest to god, if you dont have CH or if your not a close supporter, you could never really understand it, no matter if i turned blue trying to explain, but most everyone listens to the people on the tube, they feel like they can RELATE. someones out there, their is a rockstar holding a bag of ice on his or her face right now, they are just in cluster denial. coach bill
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Re: Famous people with CH
« Reply #31 on: Apr 28th, 2008, 9:57pm »
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count me in fk5
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Re: Famous people with CH
« Reply #32 on: May 1st, 2008, 10:16pm »
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I was published in several publications like "Water & Wastes Digest" (no shit!), but gave that up.  My day job doesn't lend itself to publicity.  I do my best to pack a lot of activity between cycles.  I do some serious music.  I've also been doin some accordion gigs at German breweries and Irish pubs, and am probably among the top ten blues accodionists in the universe.  So far, Letterman hasn't called.  When he does, I will speak for us all!
 
Seriously though, how do we get the attention of the real new writers?
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Re: Famous people with CH
« Reply #33 on: May 1st, 2008, 10:39pm »
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I sang backup for Barry Manilow in Milwaukee on October 20, 1982.
 
I guess that makes me a superstar with CH.
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Re: Famous people with CH
« Reply #34 on: May 1st, 2008, 11:50pm »
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on May 1st, 2008, 10:39pm, Brew wrote:
I sang backup for Barry Manilow in Milwaukee on October 20, 1982.
 

 
Get the F outta here, Bill.  You did?
 
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Think of how stupid the average person is, and then realize half the population is stupider than that.

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Re: Famous people with CH
« Reply #35 on: May 2nd, 2008, 1:33am »
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on May 1st, 2008, 10:39pm, Brew wrote:
I sang backup for Barry Manilow in Milwaukee on October 20, 1982.
 
I guess that makes me a superstar with CH.

 
Pics?
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Re: Famous people with CH
« Reply #36 on: May 2nd, 2008, 8:36am »
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on May 1st, 2008, 11:50pm, BMoneeTheMoneeMan wrote:

 
Get the F outta here, Bill.  You did?
 

No lie. Mr. Manilow's concert tour stopped in Milwaukee that night, and as part of our semester assignment for the UW-Milwaukee concert choir, we had to learn the backup choral parts for about 5 of his songs in advance.
 
The sucks part was that it was the same night as game 7 of the world series between the Brewers and the Cardinals, and guess who didn't get to watch it? I've never forgiven Mr. Manilow for that. The bastard even had the gall to rip off his shirt, revealing a Robin Yount jersey underneath. At that point he was just rubbing my nose in it.
 
And no, Beth, there are no pics. I'm kinda glad there aren't. Wink
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Re: Famous people with CH
« Reply #37 on: May 2nd, 2008, 10:32am »
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on Apr 28th, 2008, 1:19pm, FK5 wrote:
It's not about getting one story done. It's about getting our group to push push and push to get 100 stories done. It takes dedication to make something happen. It would require everyone on this board to participate somehow.  

My thougts are that this is a great idea.  If you haven't already, you really need to join OUCH and get involved.  That is the organization tasked with getting the word out.  I think you could be a powerful part of that solution.
 
-Dennis-
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Re: Famous people with CH
« Reply #38 on: May 3rd, 2008, 5:04pm »
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on Apr 28th, 2008, 12:23am, Dee wrote:
Hi Folks,
 
Anyhow, if one of you budding authors were to write a book titled "Suicide Headaches", expound on some of the gory details, then follow-up with the resolution many of us found in dealing with the beast, viola!  The title would catch anyone's attention.  It's a "Victim TV" hit... the kind of book Ophrah loves!!!

 
Now this^^^^^is a good idea! Any takers...?
 Smiley Wink
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Re: Famous people with CH
« Reply #39 on: May 13th, 2008, 9:59am »
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Dear Coach Bill, Being a Chronic ch'er(over 10 yrs) one of the negative feelingsI struggle with as an accompainment to my headaches is a form of free-floating shame.  That is, since I seem to get struck at anytime, anyplace and soon dissolve into what has a body but is basically a lump of moan and groan pain that most people, even my loved ones, don't seem to understand.  For example, there I am with my daughter and granddaughter enjoying a celebratory meal, all dressed up, looking and feeling good, counting the blessings of family and then...Wow! backslapped by the Beast!  So I'm suggesting that CH may be a "closet" afflication for the famous.
 
By the way there is an interesting book, The Life & Times of Captain N" by Douglas Glover(who taught me when I was getting my MFA) set during the War of Independence in which one of the main characters is beset by what appears to be CH's.  It's an interesting read as the author has great powers of description.
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Re: Famous people with CH
« Reply #40 on: May 13th, 2008, 11:54am »
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I once snogged a girl who dated David Cassidy, if that counts Undecided
 
More seriously, Arthur Ransome may have been a clusterhead:
 
http://www.acnr.co.uk/mar_apr/ACNR_MA07_neurology.pdf
 
http://en.wikipedia.org/wiki/Arthur_Ransome
 
He's dead now though Cry
 
-Lee
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Re: Famous people with CH
« Reply #41 on: May 13th, 2008, 12:24pm »
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thom yorke??  (radiohead)
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Re: Famous people with CH
« Reply #42 on: May 13th, 2008, 12:52pm »
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Neigh me lad, am thom Londinium Cheesy
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Re: Famous people with CH
« Reply #43 on: May 14th, 2008, 1:57pm »
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I don't know if any of you saw the House M.D. episode had a kid that suffered from cluster headaches, supposedly. I don't think they did a very good job of portraying them though. What did you all think?
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Re: Famous people with CH
« Reply #44 on: May 15th, 2008, 9:39am »
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on Apr 18th, 2008, 12:06pm, sandie99 wrote:

That's a dream you and I share. Smiley
 
Sanna

 
Add me to that!  Someday, sometime.  If the dopeymax doesn't destroy my brain too awful much  Cheesy .  I also want to include some sort of photography.  
 
 
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Re: Famous people with CH
« Reply #45 on: May 15th, 2008, 5:13pm »
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SPORTS PEOPLE: BASKETBALL; Sonics' Gill Is Sidelined  
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Published: November 25, 1993
Seattle SuperSonics guard KENDALL GILL, who suffers from recurring cluster headaches and who collapsed at practice on Tuesday, did not play at Sacramento last night.  
 
"He will remain in the Seattle area to undergo testing in an attempt to determine the cause and treatment for the headaches," said the team's spokesman, BILL EVANS.  
 
The Sonics were midway through a two-hour practice and running a three-man weave drill Tuesday when Gill went down at the side of the court, observers told The Seattle Post-Intelligencer.  
 
"I looked over and he was lying on the floor," said his teammate VINCE ASKEW. "That was scary to me. It's scary on TV when you see it, but to be right beside him. It was freaky stuff."  
 
Gill was given oxygen by the trainer, FRANK FURTADO, and had a series of tests Tuesday afternoon and evening.  
 
Cluster headaches can be more severe than migraines. They cause intense pain behind one eye and can wake the sufferer at night for periods of weeks or months. (AP)
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Re: Famous people with CH
« Reply #46 on: May 20th, 2008, 9:27pm »
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Your ideas are awesome Dee and FK5 and I'm definitely on board! If I counted correctly, there are at least four of us in this support group who have expressed a strong desire to become published writers and I think this may very well be our chance. What do you girls... Sanna, MinxKitten, and Tara Ann think about a collaborative work of some sort? Perhaps we can even include stories from some of the members of CH.com. Let me know what you all think.
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