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Joe Dunn’s disorder mirrored Luci Baines Johnson’s
It began with the big toe of his left foot.
“I couldn’t feel or move it,” Joe Dunn says. “I thought: ‘Maybe it’s just asleep.’ ”
The next morning, his whole left foot was flopping around, out of control. “I looked like Frankenstein when I walked,” the Austinite says.
In July, Dunn, then a plebe at the United States Merchant Marine Academy in Great Neck, N.Y., was rushed to a Long Island emergency room. The medical staff drew a spinal tap. They tested his protein levels. A neurologist confirmed the diagnosis: Guillain-Barre syndrome.
Yes, the same rare and serious disorder that Luci Baines Johnson now has. On April 16, the daughter of Lyndon Baines Johnson and Lady Bird Johnson was evacuated from Seton Medical Center of Austin to the Mayo Clinic in Rochester, Minn., where she has improved significantly, says a family spokesman.
Dunn, now back in Austin and fully recuperated, realizes he shares with Johnson a battle against long-term paralysis. He wants to relay a message of hope.
“It’s not every day you have a connection to such a distinguished family,” says Dunn, 19. “To help her in any way would be an honor.”
His long days in intensive care and long months of rehabilitation are behind him. On a recent warm, rainy afternoon, Dunn sipped an iced drink in South Austin, his posture erect, his navy blazer crisply pressed.
Why the blazer? “You want to make a good first impression,” he says, voicing a politeness echoed by his unforced responses of “yes, sir,” and “no, sir.”
Nothing in Dunn’s background foretold a potentially debilitating condition like the nerve-ravaging syndrome commonly known as GBS.
Son of an Ohio physicist, Patrick Michael Dunn, and a registered nurse, Michele Dunn, he grew up acutely aware of his blessings. Through school in Florida and Dallas and, later, the Lost Creek neighborhood of West Austin, he ground through textbooks to achieve almost perfect A’s. He played left tackle for the Westlake High School football team and, at 6-feet, 4-inches tall, he was welcomed onto the basketball team as well.
Although he missed playing in a state championship game — his younger brother, Tim Dunn, earned that honor last year — he was recruited to play tight end for the Academy (there is one more Dunn brother — the youngest, Ed).
And no wonder they came calling. With his scrubbed looks, carefully considered diction and seemingly dauntless work ethic, Dunn is the type of leadership material that would have made an old-fashioned Irish ward healer crack: “Let’s run this kid for Congress as soon as he makes the age cut.”
History was his favorite subject in high school. His top leaders: Teddy Roosevelt, Franklin Roosevelt, Abraham Lincoln.
“They compromised, but they never gave up their beliefs,” he says. “Especially Lincoln. He dealt with so many tough things, including the death of more than one child. Yet he held himself with distinction.”
Dunn needed role models sorely when, last July, he suddenly, if temporarily, lost the dream of traveling the world he had only glimpsed in National Geographic magazine and on the History Channel.
“My parents started freaking out,” he says about his first call from the hospital. “I had no idea what GBS was. But right away I thought, ‘Whatever it is, I’m going to beat this.’ ”
He learned that, after fighting a viral infection, the immune system can attack the body’s nervous system. His initial treatment: intense infusions of immunoglobulins and round-the-clock vital-sign checks. Then months of tender rehabilitation — helped by his mom and dad, who took him walking every day at 6 a.m. through the Lost Creek neighborhood — as the nerve casings grew back. “They grow back a millimeter at a time,” he says. “I had to learn how move my foot all over again. Once I could feel it, it was really tough just to move my foot up and down.”
By November, Dunn had regained his reflexes and he was ready to take up his dreams again. He would have to wait for another midshipman class. Meanwhile, he had dropped from his linesman weight of 240 pounds to 195. (He’s gained back 15.)
Dunn had read that Johnson, too, was in excellent health before her first GBS episode, and that the disorder was diagnosed early on, both good signs.
He hadn’t seen, however, the photograph of Johnson taken by Helene Gordon on April 13, the day before GBS hit, published here for the first time.
Johnson, 62, reclines in a field of bluebonnets. For a woman with four grown children and 12 grandchildren, there’s a fresh, schoolgirlish quality about her relaxed smile and tossed hair. Still, you recognize the accomplished businesswoman and philanthropist in the smart phone at her side and the stylish blouse.
How could this striking woman fall so far, so fast from vigor? And how long could it take to regain well being?
“I had a lot of community support,” Dunn says. “I know Johnson has that. But it would be neat to become pen pals so I could let her know: She’s going to get better.”
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By Linda Mione
May 8, 2010 3:26 PM | Link to this
Our daughter-in-law who lives in Columbus, Ohio, was diagnosed with GBS at the end of January. She is still in the hospital and still spends time on a ventilator. In the last two weeks, she has had slight movement in her toes and elbows.
My husband's son (my step-son) has talked to the doctors, but I am wondering if he should be communicating with other experts in the field, such as at Mayo Clinic.
Your thoughts would be greatly appreciated.
By James Balke
May 2, 2010 9:21 PM | Link to this
I was diagnosed with GBS January 1, 2010 and remained hospitalized
till February 24, 2010. I had a "full-blown" case. I was paralysed
from the neck down and on a ventilator for a month. My hospitalization
was at Methodist Hospital and my rehabilation at The Institue of
Rehab and Research in Houston, Texas. Thanks to early diagnosis ,[proper treatment and a good rehab program, I am now walking
with the assistance of a cane.
The support of family, friends and other GBS patients was of
tremendous help in my continuing recovery.
My age is 64, and until this diagnoses I was in perfect health.
I reside northwest of Houston, Texas.
Let me hear from other GBS friends.
james
b
By Joel Rushing
April 28, 2010 9:39 AM | Link to this
Here is the article about Joe in print form....great photo and article.
By Patricia A. Bryant, Executive Director, GBS/CIDP Foundation
April 28, 2010 8:48 AM | Link to this
Great to hear that you are doing well and will be going back to the Academy. I had GBS in 2003 and attended Catholic Mass at the Academy every Sunday.
By Patricia A. Bryant, Executive Director, GBS/CIDP Foundation
April 28, 2010 8:24 AM | Link to this
Thank you for the article on John Dunn. I am the ED of the GBS/CIDP Foundation, had GBS in 2003 and am a resident of Great Neck. I am also associated with the Merchant Marine Academy. When John was stricken with GBS I was notified by the Academy and tried to get to John in hospital but the hospital could not find a John Dunn in their records and, of course, there are HIPPA Laws. Going through GBS is very frightening. What helped me the most was a visit from someone who had gone through it. Just seeing someone walk in the door was hopeful! I am so pleased to see that John is doing well and I do hope he get back to the Academy.
Our non-profit, volunteer Foundation has 184 chapters and is in 25 countries. It was started 30 years ago by Estelle Benson when her husband, Bob, was diagnosed with GBS and there was no means of support. We are dedicated to the support of patients and their caregivers, education of the layperson and medical community, research, and advocacy. Early diagnosis and access to appropriate and affordable treatement is so important for a patient to make a full recovery.
Please send my best to John and I am so happy to see that he is doing well.
Patricia A. Bryant
Executive Director
GBS/CIDP Foundation International
Narberth, PA
By Tom
April 27, 2010 4:36 PM | Link to this
Congratulations to you, Joe! Your perseverance in the face of challenge is inspirational.
Good luck at the Merchant Marine Academy.