DEERFIELD – Just a few months ago, former world record-holder Andy Coan had his life turned upside down in a matter of weeks after what doctors originally diagnosed as a pinched nerve turned out to be an auto-immune disease called Guillain-Barre syndrome.
Coan, who set the world record in the 100m free at age 16 and then qualified for the boycotted 1980 U.S. Olympic Team, first experienced tingling in his extremities, which his doctors diagnosed as a pinched nerve in his neck. He went into surgery days later and had several discs in his neck removed. However, not long after the surgery, it became clear that something was very wrong.
“Essentially what happens is your immune system goes haywire and eats away at the sheath attaching your nerves to your muscles, in every part of your body,” Coan said. “Within 72 hours, I was totally paralyzed. I couldn’t walk or move my fingers or anything. It was very scary.”
Through a contact at Johns Hopkins, Coan and his family discovered that he had Guillain-Barre, not a pinched nerve, as originally suspected. It’s now been six months since his diagnosis, and thanks to the support of friends and family and a lot of physical therapy, he is on the road to regaining use of his arms and legs.
“About 90 percent of patients get about 90 percent of their physical capabilities back,” Coan said. “But no one tells you what happens in between. It can take a few months or a few years. It took a couple months to where I could move different parts of my legs. About a month ago I was able to stand and hold my leg. We’re now working on walking, and I’ve gotten back in a pool here in Deerfield (Florida). The lifeguards walk me in and then I’m able to walk forwards and backwards in the pool. I’ve also been doing occupational therapy for my hands, fingers and elbows.”
Interestingly enough, Coan isn’t the only elite-level swimmer affected by Guillain-Barre.
“What’s interesting about this is that Rowdy Gaines also had the same disease about 20 years ago. I reached out and talked to him and he was one of the first people I called when I found out what I had,” he said. “Rowdy and I have stayed in touch and he’s given me hope. I just have to stay patient. He told me to get my butt in the water and do whatever I can to just wiggle around.”
Rowdy and the rest of the swimming community, including swimmer Karen Sharp, who is now helping Coan with pilates and yoga, have been a tremendous support system for Coan and his family during this time.
“The swimming community has been unbelievable,” he said. “These people are coming in and helping me, and it’s amazing how many friends and teammates have stepped up to help. The swimming family is a beautiful family.”
Coan demonstrated his water therapy techniques recently in a video produced by the International Swimming Hall of Fame, saying “there’s nothing in this pool I can’t do twice as good as I do with my therapist.” He has limited use of his arms, but the water helps him to gain some movement.
Coan, who uses the tip of his nose to call and text from his iPhone, is now focused on setting up a website to spread awareness of the disease, which surprisingly, tends to strike mostly men who are in great physical condition. Coan hopes that his battle with the disease will inspire others to stay determined in their own battle with the disease.
To make a donation, click here. Follow Coan’s progress by visiting his Facebook page.
Special thanks to the International Swimming Hall of Fame for providing the video.
Swimming World obtained photos of the proposed Santa Clara Swim Center, future home of the International Swimming Hall of Fame. The city of Santa Clara hopes to build a new 3-acre International Swim Center on the other side of Central Park from its current aquatics facility that would eventually house the 7,500-square-foot Hall of Fame.
According to Bruce Wigo, Executive Director for the International Hall of Fame, the overarching factors that would make a successful marriage between Santa Clara and ISHOF are definitely in place. The new mecca of Swimming would be Santa Clara.
Centerpiece of the complex would be an Aquatic Theater, where fans would be on top of the action in the pool. Think more of courtside seats at a basketball game, less of the current standard pool setup of the fans being pushed well away from the pool.
- Photo Courtesy: ISHOF
- Photo Courtesy: ISHOF
- Photo Courtesy: ISHOF
- Photo Courtesy: ISHOF
Seems as though he has a pretty severe occurrence of the syndrome, which can manifest itself in a range of severities. Little known fact – Guillaine-Barre can be a resulting side-effect of the flu shot (the actual shot form, not the nasal version). Wishing Coan a speedy recovery!
I am recovering from GBS. I, like Andy, was in great physical shape at age 59. I thought I had a pinched nerve too, but spent 3 months in ICU totally paralyzed and on full life support. I spent another 4 months in a neuro hospital and 3 more in a skilled nursing center. After that another year of outpatient therapy.
It has been 2 & 1/2 years and I walk with a cane and still have numb lower legs, feet, and finger tips. I am so thankful I am as good as I am. If I don’t get better than this it is better than where I was. How can I get in in touch with Andy? GBS strikes only about 1 out of 100,000 people so we are a tight nit group of survivors.
Thomas-
Please feel free to contact Andy @. andycoan@.bellsouth.net. He would love to speak to you!
There are two excellent support groups on facebook, and one “Guillain-Barre Survivors website Experience Project” Really supportive and helps with the isolation which GBS can cause.
keepin it real, clg
I came down with GBS july 2010, i was misdiagnosed numerous times and was even told by an ER dr at UAB birmingham alabama that i was a hypochondriac and was faking. Weeks went by and i was unable to walk without help, i was in the worst pain i had ever felt in my back muscles and leg muscles, my skin actually hurt so bad it was painful to wear clothes.
By now i couldnt swallow water without choking, i had to be carried to the bathroom and had to be cleaned because i had no use of my arms or hands. The pain never stopped. Frustrated with me because 3 different hospitals and my regular dr had said its ” in my head”, i was packed up and shipped to my sister in Louisiana for her to “deal with me”.
That night at 4 am she called an ambulance because we both thought i had a stroke. Paramedics took my vitals and my heart rate was 52bpm and my bp was 285/191. I was immediately diagnosed with GBS admitted to ICU where i spent the next 2wks, then another several months learning to walk, brush my hair and teeth, feed myself, write my name and bathe myself. At that time i was a 47yr old medical assistant, now i am 51, on disability, walk with use of walker, in constant extreme pain and severe neuropathy in my feet, toes, hands and fingers.
Can someone tell me if there is any chance of a relapse if i get a viral infection or will i always have a weakened immune system?
Sounds very familiar. Multiple trips to Druid City ER resulting in an array of misdiagnosis. Ranging from Bell’s palsy, stroke, back injury, pain killer hunting, all over the chart. Went from deer hunting to could not walk in a week. And the pain was excruciating. Finally a referral to a spine and pain clinic . Two more weeks to wait as an invalid, totally paralyzed, (thought I was dying), but that Dr. knew where to send me, to a neurologist. Ten days for that appt., then I found out I probably would live, maybe walk in 6 months.
I am very sorry for Andy Coan’s diagnosis with removal of cervical discs (as reported here), the eventual corrected diagnosis of GBS, and the suffering that he has and is enduring. The GBS|CIDP Foundation International is available to provide support, with liaisons and chapters throughout the world, and providing research funds and advocacy. Please consider contacting them. (www.gbs-cidp.org) Facebook, also, has several groups where present and past patients interact which is a wonderful source for support. I, too, am a survivor of Guillain-Barre Syndrome (2005). As the same as an athlete, endurance and patience is needed for recovery, along with a positive attitude, exercise, and excellent nutrition. My heart goes out for Andy Coan and his family. Stay strong!
I “caught” my GBS from a colonoscopy. When they removed polyps, some nerve cells went into my bloodstream and vaccinated me against my nerves.