Results 1 to 5 of 5

Thread: "He is a bulldog. He doesn't quit." A parent's role in advocacy.

  1. #1
    Banned Faye's Avatar
    Join Date
    May 2003
    Location
    Jacksonville, FL
    Posts
    6,839

    "He is a bulldog. He doesn't quit." A parent's role in advocacy.

    Bostondad's post got me thinking......we really are getting a lot of parents advocating for their paralyzed family members. There was a time on CC when it was rare to hear a parent speak on the need for cure.


    SOUTH WINDSOR, Conn. - His soul and spirit remain intact. But because Michael Donnelly is in the advanced stages of Lou Gehrig's disease, the former Air Force fighter pilot and Gulf War combat veteran can only move his eyes.

    To communicate, he and his attendants have worked out a system: Someone recites the alphabet, and Donnelly blinks at the appropriate letter to slowly telegraph a message. So it took a while, but late last week Donnelly had something to say about the guy who took up his fight when his body started to fail.

    "I knew my Dad was honest, but I did not know how much integrity he had until my sickness," Donnelly said. "He is a bulldog. He doesn't quit."

    Last Tuesday, after maintaining for years that Gulf War Syndrome was nothing more than stress, the government acknowledged that Desert Storm veterans were twice as likely as non-veterans to suffer from Gehrig's, the fatal neurological disease.

    Thanks to Donnelly's persistence and the efforts of his father, Thomas, a lawyer and former Marine, the military will pay full benefits for 40 Gulf veterans known to have Lou Gehrig's disease, and has moved a step closer to taking care of all the soldiers made sick by fighting in the war. After years of investigation, Donnelly and his family concluded that Iraqi nerve gas was in the atmosphere during the Gulf War, affecting perhaps as many as 100,000 soldiers now complaining of a variety of maladies.

    Michael Donnelly, 41, is a testament to some seemingly opposing realities. He is proof that the more you need people, the more you can help them, and that the more you lose in life, the more you can appreciate the faculties you still have.

    At Donnelly's home the other day, a respirator cyclically wheezed life into a man who cannot talk and whose body has failed him in more than a few undignified ways.

    Though trapped by incapacitation, Donnelly exuded an aura of someone in charge. His eyes - quick, big, and round, enhancing his boyish good looks - seemed to miss very little from his massive life-support wheelchair.

    He is still very much Major Michael Donnelly: "Big D" to his Air Force buddies, the F-16 Falcon tactical jet pilot who flew 44 missions over Iraq in 1990 and 1991. His ultimate challenge, however, began four years later.

    On an August day in 1995, Donnelly was jogging at Sheppard Air Force Base in Wichita Falls, Texas, when he accidentally ran through a fog of malathion, an insecticide being sprayed for mosquito control. Shortly afterward, he started suffering from bouts of insomnia, heart palpitations, and drenching night sweats.

    By the spring of the following year, doctors had diagnosed the strapping young fighter pilot and father with amyotrophic lateral sclerosis or Lou Gehrig's disease, which slowly destroys the body's nervous system, leading to complete paralysis and, ultimately, death.

    Mitch Albom, author of the 1997 book "Tuesdays With Morrie," wrote a pointed description of the disease that killed his Brandeis professor and mentor: "ALS is like a lit candle: It melts your nerves and leaves your body a pile of wax."

    The rare disease typically affects older people, but Donnelly was just 35 when he was diagnosed.

    Soon afterward, members of his family began doing research. Their subsequent conclusion: The low dose of malathion, combined with exposure to nerve agents he may have flown through on combat flights, put him at high risk for the disease.

    "Mike called me in January of 1997 after reading some work I had been doing on brain injury from chemicals," recalled Robert Haley, an epidemiologist at the University of Texas. As his condition slowly worsened, Donnelly, his father, and sister Denise began collecting anecdotal evidence of other Gulf veterans with ALS.

    "Those three were not only the crucial players in all of this - they were often the only players in the beginning," Haley said.

    Thomas Donnelly, who was a Marine Corps helicopter pilot, launched a campaign to persuade the military to acknowledge that the chronic illnesses of some Gulf War veterans were caused by combat conditions.

    Donnelly and his sister, meanwhile, collaborated to write "Falcon's Cry," a diary of Donnelly's Gulf War missions, his encounters with suspicious chemical targets, and his subsequent search for clues about how he and other veterans contracted ALS.

    Denise Donnelly recalled a typical response by the military during a 1998 party in Washington when her brother was on a book tour.

    At the time, Donnelly still could communicate using a cumbersome device allowing him to tap out messages on a computer keyboard using head movements. During the party, a Pentagon public relations official approached Donnelly's wheelchair and urged the highly decorated combat pilot to tell him how to help.

    Slowly, letter by letter, his sister recalled, Donnelly's response painstakingly crawled across the computer screen:

    "Save my [backside], don't kiss it."

    http://www.rideforlife.com/archives/000037.html

    "There’s far too much unthinking respect given to authority,” Molly Ivins explained; “What you need is sustained outrage.”
    Kerr, Keirstead, McDonald, Stice and Jun Yan courageously work on ESCR to Cure SCI.

    Divisiveness comes from not following Christopher Reeve's ESCR lead.
    Young does ASCR.
    [I]I do not tear down CRPA, I ONLY make peopl

  2. #2
    Banned Faye's Avatar
    Join Date
    May 2003
    Location
    Jacksonville, FL
    Posts
    6,839

    The Longest Battle

    The Longest Battle
    An ailing pilot has fought Lou Gehrig's disease and red tape to secure benefits for veterans.

    By SHARON COHEN of The Associated Press
    Published Sunday, February 17, 2002

    .....His mother, Rae, became the medical researcher, phoning doctors and foundations. His father and sister, Denise, became the agitators. They made hundreds of calls and wrote hundreds of letters until powerful people in the VA and the Pentagon and on Capitol Hill knew their names.

    They also tracked down other ALS Gulf veterans and designed a medical questionnaire for them.

    Once all three even picketed a speech by retired Gen. Norman Schwarzkopf, the Desert Storm commander - much to the chagrin of Maj. Donnelly.

    In 1997, Donnelly, his blue uniform bedecked with ribbons, testified on Capitol Hill, claiming the military was trying to cover up and trivialize Gulf War illnesses.

    "Remember," he said, his words already slurred as his throat muscles were wasting away, "I am not the enemy."

    It pained him to be there.

    In 1998, Donnelly, with his sister’s help, published his story. Ross Perot, who has bankrolled research on Gulf War illness, helped get them on the Larry King show.

    "I had this illusion that writing this book would be saving his life somehow," Denise says. "We really felt rushed. I thought, maybe if we can just get the word out, somebody would read it and know what to do and the government would find a way to fund the research and find a cure."

    Instead, there was nothing.

    Well, not exactly nothing.

    That fall, at a Gulf War conference, Denise recalls a Pentagon official kneeled, looked into Michael’s eyes and said, "I’m going to do everything I can to help you."

    By then, Donnelly had a voice synthesizer. He typed a message, repeated by a mechanical voice: "Save my ass. Don’t kiss it."

    http://archive.showmenews.com/2002/F...217Feat003.asp

    "There’s far too much unthinking respect given to authority,” Molly Ivins explained; “What you need is sustained outrage.”
    Kerr, Keirstead, McDonald, Stice and Jun Yan courageously work on ESCR to Cure SCI.

    Divisiveness comes from not following Christopher Reeve's ESCR lead.
    Young does ASCR.
    [I]I do not tear down CRPA, I ONLY make peopl

  3. #3

    We need more bulldogs, stop disarming them!

    "Save my ass. Don’t kiss it."

    Very well said!
    Don't ignore the Reeve Legacy, Remember he and Dana supported open research and fought hard for ESCR

    StemCellBattles

    Support H.R. 810

  4. #4
    Senior Member Hunker's Avatar
    Join Date
    Mar 2004
    Location
    In a wheelchair
    Posts
    3,860
    That is good my adoptive parents left my ass

  5. #5
    Hunker, I'm glad you are here. I myself am against abortion as a form of birth control. ESC stem cells is not the same as abortion.
    Don't ignore the Reeve Legacy, Remember he and Dana supported open research and fought hard for ESCR

    StemCellBattles

    Support H.R. 810

Similar Threads

  1. The Last Resort - Scary
    By Steven Edwards in forum Life
    Replies: 22
    Last Post: 09-21-2007, 05:30 PM
  2. Replies: 26
    Last Post: 01-25-2005, 07:21 AM
  3. Replies: 0
    Last Post: 12-13-2002, 02:47 PM
  4. Replies: 0
    Last Post: 06-07-2002, 10:34 AM
  5. Parents w/Disabilities & Their Teens
    By Teens in forum Life
    Replies: 0
    Last Post: 11-21-2001, 02:35 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •