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1961mom

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Posts posted by 1961mom

    News Story featuring 1961mom

    in General Board

    Posted

    I agree Dan....it's worth that one set of ears like your new friend!  Dang tenacious and like you said,

    Any kid ( he's probably in his forties ) that would go to that much trouble to help his dad is a hero in my book.

    Eventually I'll get the nerve to follow in your footsteps Dan...and actually speak of psilocybin!  And because I didn't mention the magic, I'm happy to report about 5 fellow buster's send a note to me with Clusterbuster's web address info! Which of course, I loved!

    Thank you fellow BUSTERS!    ;)  BPOE

    News Story featuring 1961mom

    in General Board

    Posted

    I've posted many responses throughout the years but I do believe this is my "maiden thread" post!  lol

    Myself & other clusterbusters are going to Washington DC next week with other rare headache disorder organizations & Migrainers with an Advocacy Group known as "The Alliance for Headache Disorder Advocacy".  I felt it was worth a shot to get some local attention for us & possibly get a few more signers to sign the HOH (Headache on the Hill) petition.

    http://act.allianceforheadacheadvocacy.org/5624/urge-congressional-hearings-on-impact-migraine-headache-disorders/

    I was quite concerned that they had the camera trained on my CH side!  lol

    The best part is (to me) that the reporter actually went the extra mile to get a local neurologist to be a part of the story.  I bout cried when I heard him confirm what we already know..."Very few physicians are aware of this disorder"

    Any way here's another 20 seconds of cluster headache awareness in the spotlight (community of about 250,000) and that's a good thing!!!

    http://www.kval.com/news/local/Instant-and-excruciating-Local-headache-sufferer-petition-congress-143568986.html?tab=video&c=y#IDCThread

    8-) << hollywood shades borrowed from Dan!

    Money Talks

    in General Board

    Posted

    These issues & more are exactly what Clusterbusters Advocacy participants will be discussing, presenting & purposing when we go to Capital Hill to be heard along side the Migrainers March 26th & 27th. 

    We'd love to add ya to the "I'm Going" group!!!~

    BOL?

    in Research & Scientific News

    Posted

    I can't believe all that I've missed and the urgency of Micheal's appointment...I mean yes I knew Micheal's case was extraordinary but I seriously believed this appointment (other thread) was something of the 7 month normal waiting time type of appointment you've described.

    This thread has brought tears to my eyes & laughter to my heart (out loud!).  This truly is a family worth fighting for & it's clear to me now (even more if that's possible) the kinship & bond is stronger than....well, Guerrilla Glue!!

    Many prayers to you Micheal & Ron (heart)

    Cindy

    Money Talks

    in General Board

    Posted

    And...to add to CHfather's post by including Migrainers in the upfront stages of the FDA approval we may be risking the greater influence (and deeper pockets) of the existing big pharma who would stand to financially lose should bol-148 be approved.  For many reasons, but the foremost being repeat customers!

    What I understood from the guest speakers at both 2010 & 2011 conferences this is a very fine line of balance we must maintain so as not to get wiped off the face of the earth before we even get started.....sort of allow us to pursue the process, get FDA approval and then trickle out the off-label prescriptions to the migraine market.

    Employed/Unemployed Clusterheads

    in General Board

    Posted

    It's like a gift from God when you've got an understanding employer relationship going for you. 

    I've been employed by the same gentlemen whose primary interest is in patent research & development.  He's been more than accommodating throughout my career with him, including up to 4 months off, paid!

    To say I've appreciated this is an understatement.

    When I turned chronic in 08, I moved my office home and lessened my workload by half.  I'm just now beginning to feel the urge to resurface in my career. 

    There are indeed some very kind folks on this earth and I'm thankful for you to be working for one of them...may this continue until "busting" is successful for you.

    ps One thing that I know helped me was the fact that an associate was friendly with the former Surgeon General, C. Everett Coop.  He kindly shared with my employer & a few associates what the Beast is and the extreme pain involved!

    So, migraines too?

    in General Board

    Posted

    I've been suggesting this treatment to a friend of mine who spends on average 6 days a month in bed from horrific migraines.  So far I haven't been successful.  I am very interested in how your friend responds.....

    And I wish that friend wellness & pain free time too :)

    Med students

    in General Board

    Posted

    Ting,

    This is great news & I believe your presentation, sincerity and candor are probably welcomed by these guys...the med students.  I would have loved to have been a fly on that wall!!!!

    :)

    Advocacy project, Wash DC.

    in Advocacy, Events and Conferences

    Posted

    I'm thrilled beyond mention about the possibilities we've got on our horizons!

    I'm certain, in our case we won't have the same issues as the "Shrimp on The Treadmill" study did!  But it's an interesting read on how the spin can well, be spun!

    http://www.npr.org/2011/08/23/139852035/shrimp-on-a-treadmill-the-politics-of-silly-studies

    But none of this is new to any CH sufferer...after all, "It's only a headache.  Take 2 aspirin and go lie down for a bit"

    But my favorite spin of all time is still the PubMed publication I came across last year where the author is basically telling the reader to seek out and meet a cluster headache sufferer, thank that person with deep gratitude and a robust handshake or hug because cluster headache sufferers are basically the guinea pigs of mankind whose jobs are to test the pain mankind can endure on an evolutionary basis!

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