Miracles Happen

Just ask Jean Abbott.

Jean (Sharon) Abbot graduated from Winona State University in 1998, but only recently took her first walk across campus.

During her years as an undergraduate, Jean believed going to classes and attending college on her own was a dream come true. But little did she know…

Jean was diagnosed at a very young age with Spastic Diplegia, a form of Cerebral Palsy (CP) that disrupts the brains ability
to control balance and body movement. She doctored with the leading CP neurologists in the country and was treated at the very best CP hospitals, with complete consensus on the diagnosis.

“I was a positive, optimistic, happy-go-lucky girl who just happened to be trapped in her own body,” said Jean. “I wasn’t able to dribble a ball down the basketball court, run around the school playground, hold a pencil with ease to complete daily homework, or even use the restroom without a challenge.”

Today, Jean is a mother of three and able to walk, hike, drive a car, and do so many of the ordinary things in life that weren’t even remotely possible in the past; activities that most take for granted on a daily basis. How is this possible for a person with Spastic Diplegia? Jean swallows a little pill – one might argue, a magical pill.

But there were 33 years of “not able to” before the miracle came to light.

As Jean grew into adulthood, the idea of going to college, marrying and having a family of her own seemed a bit of a pipe dream, knowing the challenges she faced on a daily basis. But Jean was determined to live life to the fullest, and in the fall of 1994, she found herself enrolled at WSU, pursuing a four-year paralegal degree.

“My brother and his girlfriend had attended WSU, so I felt comfortable on campus. And two childhood friends also were attending WSU, so I had a built-in support system.”

Jean was well aware of the challenges she faced getting to class and keeping up with a college lifestyle. She knew her limitations: she had more energy and was always stronger in the early part of the day, and deteriorated as the day went on. And Jean was aware of the campus’ limitations when it came to students with mobility concerns. Her answer was to use a mobility scooter to get to classes and club activities.

But even with a scooter, maneuvering campus for the physically challenged wasn’t easy. Jean helped to change that, working with university employees to identify necessary modifications that would make life on campus a little more “user friendly” for students with disabilities.

“Nancy Dumke, now Assistant Director Access Services for Students with Disabilities, was so very, very helpful,” said Jean. “WSU wasn’t a very handicapped friendly campus back then and Nancy would work with me and various department to get what I needed so I could get where I needed to be. I couldn’t have done it without her, and she is still at WSU!”

Despite her mobility challenges, Jean integrated well into college life. She attended classes, made new friends and even met the man of her dreams.
Steve Abbott had come to WSU, an associate’s degree already in hand, to study Production and Operations Management. But what he found himself studying was Jean! The two fell head over heels in love, and Steve proposed to Jean on Garvin Heights. Jean’s earlier concerns about marriage and family being a “pipe dream” went flying out the window, and she responded to Steve’s proposal with a resounding “YES!”

Jean graduated in the spring of 1998 with a degree in Organizational Communication, finished an internship and went to work for the Social Security Administration as a service representative. Steve graduated the following year and the two were married July 29, 2000.

“I am so incredibly thankful for Steve,” Jean began. “He has been so supportive and encouraging. He’s been my biggest cheerleader. He’s an incredible blessing.”

Winona remained a very important place in the Abbott’s hearts and minds. Relocating to Macon, Georgia, they thought it fitting when they purchased a house on Sugar Loaf Drive. And when their first born arrived 13 years ago, they named her Winona, which means “first born daughter.” Today, Jean and Steve reside in Plymouth. Minn., and have two more children, Sharon, now age 11, and three-year-old, John.

A World Turned Right-Side-Up

Jean hit her lowest point in 2010, suffering from three decades of progressive and debilitating symptoms. “I could barely move my arms or legs due to countless hours of spasms, stiffness and cramping throughout my body,” she said of those dark days. Countless doctor visits, medical procedures and unnecessary medications and surgeries brought little relief. Until one day in 2010, when Steve brought her to see a new doctor.

Jean and Steve retold their same scenario yet one more time to this new physician, telling of symptoms that worsened as the day progressed, of needing solid sleep patterns… The doctor listened carefully, and what she revealed next would be a life- changer for the Abbotts. It was Good Friday, 2010.

“The doctor’s eyes lit up and she said, ‘I think you have Dopa Responsive Dystonia (DRD), and what if I told you that there is a pill you can take to be able to walk from this chair to that one and you won’t even have to think about it?” Jean recalled that amazing moment. “I told her she was crazy! A pill wasn’t going to help. So I wasn’t even going to fill the prescription! It just didn’t seem like something that was possible. But Steve said we should at least try it; what’s the harm.”

The first day after taking the new medication, Jean felt a little better, but she attributed it to a glass of wine she had the night before and a good night’s sleep. By day two — Easter Sunday — she was standing unaided for the first time in over a decade. It was at that very moment that she knew the little pill was working!

Misdiagnosis of Cerebral Palsy and Dopa Responsive Dystonia is not entirely unheard of, as DRD symptoms often mimic more common movement disorders such as CP, but can be reversed or controlled with L-Dopa, which is not the case with CP. (L-Dopa is used to treat Parkinson’s disease, also a neuro motor disorder.)

Jean had to work hard to retrain her brain, and it continues to be a process. She suffers from occasional flare-ups, particularly when she is under
a lot of stress or depleted by a cold or flu, so she must stay as healthy and active as possible, always being mindful of her symptoms.

“This just doesn’t happen to people,” Jean began. “You hear of healthy people losing mobility in an accident, but not people regaining their mobility. It’s just so amazing! It doesn’t get old! Being able to do things for myself is wonderful. And I’m so grateful that my parents are around to see it.”

With a friend’s encouragement, Jean began blogging her journey and her amazing recovery, in the hopes of informing others of the potential for misdiagnosis of CP. “I wanted to share my story, but I couldn’t even get the local TV stations to call me back!” she recalled. So she took to the Internet. The Mighty, a popular online feature story service, picked up Jean’s blog and told her incredible story. And from there it went viral. That’s when NBC’s Today show came calling to invite Jean and her family to appear on the program. Today traveled to the Abbott’s home to tape the interview.

“Oh, it was very stressful, but the Today crew was so incredibly nice and put the whole family at ease,” said Jean. “I had to be careful because the stress did make my symptoms worse, but then I would think how very fortunate I am to be able to share my message on such a high profile platform. I am just so grateful for the experience.”

Recently, the Abbotts returned to Winona to roam the campus and show their children where Mom and Dad went to college. For the first time ever, Jean was able to walk from one end of campus to the other. “The campus was just so beautiful, and to be walking it with Steve and our kids… It was just amazing,” Jean recalled. “It is even more beautiful than when we were students.”

But perhaps even more beautiful than the WSU campus is the fact that Jean harbors no bitterness regarding her misdiagnosis nearly four decades ago.
Jean concluded, “When I go to bed at night and think about who I was in my past life, I smile because I’m proud of who she was and pleased that she is making the most out of her current life, never taking anything for granted. My journey was my journey, and I’m grateful for it.”

Follow Jean Abbott’s journey: Jeanabbott.com; facebook.com/ InspirationalRainyDayFriend; twitter.com/JeanSAbbott.