Pedaling with Pete: one man's journey to raise awareness about cerebral palsy. (Cerebral Palsy).

In 1989 Pete Zeidner decided he would make a difference. From birth he had battled cerebral palsy to live independently. With the help of two strong and supportive parents and an extraordinary determination and belief in himself, he had succeeded to a remarkable degree. He attended regular schools from seventh grade on and graduated from Kent State University in 1986. But a college education didn't open the doors that Pete hoped it would. Though he went on countless interviews, he always seemed to come up empty-handed. Understandably, he became extremely angry and frustrated and suspected that, due to his disability, no one would give him the opportunity to use what he had learned in college. Then one day he decided enough was enough. He decided to do something with his life and succeed, even if it didn't involve his degree in marketing. A cycling enthusiast, Pete decided he would raise money for cerebral palsy research by pedaling his custom-built, specially adapted recumbent bike 1,000 miles around the entire perimeter of Ohio. "I believe that anger and frustration are two driving forces in my life, and they can be put to good use in the proper situations," Pete says today. "I was hearing about all of this research being conducted for other conditions like Alzheimer's disease, but I never heard about any research for CP. I decided that was where I could make a difference."

Pete's 28-day ride was so successful at raising awareness--and dollars to fund research--that two years later he started the Pedal with Pete Foundation. Through annual bike-a-thons and other fundraising events, Pete's foundation has to date raised more than $80,000--all for the prevention, treatment and cure of cerebral palsy. No small accomplishment for a first-generation American who has faced more than his share of reversals in his 43 years.

Two Strong Parents

Pete was born in Cleveland in 1958 to parents who immigrated to the US. At first he was not expected to live because of his cerebral palsy. Then, at the age of 4, life dealt him a second cruel blow. His mother was killed in a car accident. When his father Otmar, a physician, remarried, Pete gained a new mother in Haide Zeidner, the person he credits with turning his life around. Refusing to let pity ruin Pete's chances in life, Haide (pronounced HI-dee) chose tough love instead. When Pete was 5, she weaned him off his baby bottle, toilet-trained him and helped him learn to feed and dress himself.

When asked how she had the wisdom not to coddle Pete, Haide answers modestly, crediting her youth and inexperience more than any special insights. It also helped, she says, that, being a stepmother, she didn't experience the guilt that often hampers a biological parent raising a child with disabilities. Instead, she realized that Pete would have to work harder all his life in order to keep up with the rest of the world. Whether or not she made it easy for him now, no one would make it easy for him later.

Today, Pete's praise for Haide is unequivocal. "She accepted me unconditionally as her son, and, although she was very strict with me most of the time, and I hated her for it then, I now realize that she did a great thing for me. I have a lot of inner strength and faith in myself because of Haide's strong belief in tough love."

If Haide was the major influence in his life, Pete also found a strong role model in his father. "As I look back on his life (he passed away in June 2000), I find that he was a very courageous, compassionate and dedicated man. Throughout my father's 81 years, he was the classic example of courage and determination. He loved photography, skiing, hiking and mountain climbing. I especially loved the stories he would tell us about climbing the Alps with my oldest brother, Chris."

With obvious pride, Pete recounts how his father came to the US from Vienna, Austria with a medical degree, a wife and two small children, and worked as an orderly in a New Jersey hospital until he learned English. The year Pete was born, Dr. Zeidner established his own practice in Ohio, the first state that allowed him to take the medical board exam. "What made his practice so successful was his fluency in four languages. He was able to relate to and communicate with a wide percentage of the population."

Though Haide and Otmar didn't always agree on what was best for Pete, they did everything in their power to help him realize his potential. When Pete was in the second grade, they removed him from the special classes he attended at the local elementary school and started him on an intensive exercise program Haide had read about in Reader's Digest. The program was based on the philosophy that in order to learn to walk, a child must first learn to crawl. "The program was intended to promote normal development in undamaged areas of the brain and reprogram damaged areas to promote normalcy," Pete explains. "The exercise regimen consisted of crawling and creeping, and swinging on monkey bars."

Some of Pete's most vivid childhood memories involve these grueling workouts. His daily exercises began at 7 AM and lasted 11 or 12 hours, seven days a week. "I was given one or two hours a day for the purpose of home schooling, which I received through an outside tutor," he recalls. Family members also participated in the lengthy exercises, manipulating Pete's head, arms and legs in a series of repetitive motions to simulate normal movement.

Although the American Academy of Pediatrics later issued concerns about the effectiveness of that program, Haide says that for Peter it proved beneficial. She noticed an immediately improvement in his health. Where he had once suffered colds from September to May, he soon became the healthiest member of the family. The rigorous program also had a further benefit. It prepared him to live an independent life.

Proving He Belonged

By seventh grade, Pete could walk well enough to enter a parochial middle school, St. Mark Lutheran School in Cleveland. Though Pete was the only student with a disability in the school, Haide recalls that he was thrilled to be there.

Pete remembers how he made it a positive experience. "In the beginning I felt like I had to prove to them that I deserved to be there and, therefore, I believed that I had to give 200 percent. But it wasn't long before I made many friends. I felt like I fit right in among the other students. I realized that people could look at me and see Peter, not the 'kid with the disability.'"

Along with hard work, he also discovered the value of humor, especially in dealing with embarrassing situations: "If I tripped and fell in the hallway and someone became nervous or upset to see me fall, my friends and I would lighten the situation with a big laugh and say `I'm just taking a nap,' or `I thought I saw an M&M down here and I love chocolate.'"

Pete's school experience was so successful that in 1974, Lutheran High School West accepted him on a trial basis. Like most teenagers, he went through a rebellious phase. But he also found his disability to be harder to laugh off than it had been in middle school: "I had a lot of anger and frustration built up inside of me," he recalls. "Although I had many friends that accepted me as I was, I was angry with myself for not being able to do more. I took a lot of my frustration out on my younger siblings, especially when they went out with their friends and I was told I couldn't go along."

Frustrated by his inability to drive or to participate in the new independence his friends enjoyed, he rebelled against the rigors of his exercise program, which, at the insistence of his parents, had continued uninterrupted for ten long years. Stressful times followed as Haide tried to take him in hand. She now believes that the family was too fanatical about the program, saying, "You get hung up on all the things you want for your kids and don't concentrate on enjoying the positive."

So, when Pete turned 18, it was Haide who decided to stop pushing him. With her youngest child, Pete's stepsister, entering first grade, Haide decided to go back to college to pursue a degree in special education. She was not too busy, however, to advise Pete when he was at loose ends after graduating from high school. Although college was not a given for a student with a physical disability, Haide encouraged Pete to take telecourses through the local community college. Later, he attended regular classes at the college and eventually enrolled in Kent State University.

Living on his own at KSU was a big adjustment for Pete. He was very unhappy his first year and wanted to come home every weekend. He might have come home weekends, then never gone back were it not for the fact that Haide once again got tough with him. This time, she had to get tough with the entire family, who believed she was being too hard on Pete. Haide reasoned that if Pete didn't spend at least some of his weekends at school, he would never get used to the social life or learn to make friends. It was a hard battle. "Pete became depressed," she says. "At one point, he even drove his wheelchair down a flight of stairs. He was doing things to sabotage him, self. He tried to give up completely but I wouldn't let him. Then, after the first year, he didn't want to come home at all."

True to form, Pete began to make friends and even joined a fraternity. He also got his first computer, which proved to be a lifesaver. It gave him a lot of independence and confidence since he had learned to type back in the second grade, when he used the eraser end of a pencil to punch the keys.

Biking Equals Independence

Pete has always been attracted to tools that augment independence. His attraction to bicycles and the freedom of movement they offered came early. Before he was even out of diapers, he would ride his tricycle around the basement. At 13, to celebrate his church confirmation, his parents gave him an adult-sized trike. "The kind the old folks in Florida ride around on," Pete says with a grin. But because the Zeidners lived in the country, where the highways were busy, Pete was only permitted to ride it in the driveway, so he would simply ride the trike in circles in front of the garage."

It wasn't until Pete was 31 that he got his first heady taste of the freedom biking could offer. His professional business fraternity, Delta Sigma Pi, helped him raise money to buy a custom-built, 36-speed, three-wheel recumbent bike (Pete talks about his recumbent bike). "I remember riding my recumbent for the first time through the streets of Kent, Ohio, and the ultimate glee that I felt," he recalls. "Maybe it was also the first time that I was able to get up in the morning, take a look at the day outside, and, if the mood struck me, I could get on my bike and go visiting." He would bike to Haide's house or his brother Steffan's--both 60-mile trips each way. Biking gave him the feeling of independence he craved. "I didn't need to rely on others to drive me around and do things when their schedules were free," he remembers. His long years of grueling physical exercises were paying off. "I believe that the exercises toughened me up, not only physically but mentally as well. I became a stronger man because of it."

During the long hours of blissful pedaling, Pete came up with the idea to ride his new bike throughout Ohio to raise money for CP research. In 1991, Ohio Elks lodges made this dream a reality by helping Pete organize his awesome 1,000-mile statewide bike trip. Family members, who had always been supportive, helped out in planning and completing the trip. His brother Chris rode along with him for several days, and his parents drove a van that accompanied him throughout the ride. The 28-day trip raised $10,000 and lead to the birth of the Pedal with Pete Foundation (PWP) in 1993.

Each May since, Pedal with Pete (PWP) holds its signature Pedal to Make a Difference bike-a-thon event in Kent, Ohio; this year's event is scheduled for May 18. Participants can choose from a 17 or 40-mile bike ride or a two- to four-mile hike. Those who can't participate in the event but still want to support it are encouraged to make donations (with a contribution of $50 or more, donors can be Pete's Pedal Partner, and have their name listed on a poster attached to Pete's bike during the ride.) All proceeds go to support cutting-edge research conducted by Dr. Leland Albright, chief of pediatric neurosurgery at Children's Hospital of Pittsburgh and one of the foremost researchers in cerebral palsy and movement disorders in the world. Some of Dr. Albright's work includes pioneering the use of the intrathecal baclofen pump and deep brain stimulation.

"What I want is a national center for cerebral palsy staffed by people who have a commitment to improving the life of people who have CP, people who are committed to doing research, to studying the different treatments," says Dr. Albright. "I want a center where people can go for state-of-the-art care and evaluation regardless of their problem--whether it is orthopedic, neurological or involves surgery."

Dr. Albright agrees with Pete's assessment that there is very little research being done in CP and lauds Pete's efforts to change that. "He's a remarkable man. He's done more than any single person I know to raise funds for research in cerebral palsy in spite of having severe CP and having had a broken neck and a spinal cord injury. Maybe only someone who has experienced life as an individual with CP really understands how it affects every aspect of every day."

Participation in Pete's bike-a-thons has grown steadily, with more riders and new sponsors joining every year. Over 100 bikers and 30 hikers turned out for last year's event, which generated more than $21,000 for CP research. The annual event has also inspired satellite rides. On August 17, 2002, Pedal with Pete will hold its first bike-a-thon in Columbus. The event is expected to draw more than 300 riders. In Iowa, a 4-H club now sponsors a bike-a-thon in Pedal with Pete's name. The Emmetsberg, Iowa Ride will take place September 2002.

A New Challenge

If Pete's story ended there, it would be a remarkable record of achievement. But life had yet another new challenge in store for him. In 1999, Pete joined 3,000 other riders in the six-day, 50-plus-mile-a-day bike tour known as the Great Ohio Bicycle Adventure. One day, while cycling down a steep hill, Pete swerved to avoid a parked van and landed in a ditch. Eventually tests would show that he had fractured two vertebrae in his neck and sustained a spinal cord injury.

Though he tries to put the accident into perspective, Pete is still angry about his medical treatment after the accident. "I found out that the medical profession doesn't really (care) about cerebral palsy. When I was first admitted to the hospital, they simply sent me home saying there was nothing wrong with me even though I couldn't move a muscle. I was told that I was just in shock over the wreck and that I would be back to normal after 48 hours or so." In fact, he was paralyzed from the neck down.

His recovery was slow and included long months of partial rehabilitation. Yet the most painful blow proved to be the loss of his hard-won independence. Before the accident, he was able to live on his own, with minimal help, in his Kent apartment. Now he requires the almost full-time services of an aide to undertake his once routine daily activities.

Despite the severity of his injury, Pete struggles to maintain his optimism. "My goals are to continue keeping myself strong and fit and keep my sights set on the future, which will be soon I hope, when there will be a cure for spinal cord injuries and an increased awareness of CP." In the meantime, he has found a new role model and source of optimism in actor Christopher Reeve, who sustained a spinal chord injury in 1995. In Pete's estimation, "Reeve has never once taken the low road, made any excuses or given in to discouragement. Instead, Reeve has courageously talked about his injury, and daily challenges, and has become the number one advocate for spinal cord research."

Pete hopes to be that kind of advocate for cerebral palsy research. "Since we don't have any celebrities pushing the issue for CP, we need to be pushing ourselves harder. That energy will prompt people like Dr. Albright to push the envelope even further than they already have," he says. Though it is doubtful that Pete will again bike independently (he now rides a tandem recumbent bike with his brother Chris), he holds onto his dream of having the Pedal with Pete Foundation become nationally recognized. "I would like to see Pedal with Pete host bike- and hike-a-thons throughout the country. I would also like to start a Pedal with Pete endowment at the Children's Hospital of Pittsburgh. With an endowment, I believe that Pedal with Pete can achieve greater recognition and reach a new level of participation and sponsorship."

For now, Pete keeps at his daily workouts, which include stretching exercises, sessions using the leg press, lateral pull down and seated rowing machines, as well as cycling on his stationary recumbent bike. Both a physical and occupational therapist assist with these sessions.

Pete says he is also bolstered by his strong faith in God and by the unqualified love and support of his family. "I have a 4-year-old niece, Maddie, and a 2 1/2-year-old nephew, Mateo, who bring such joy to my life. They accept their Uncle Pete unconditionally, and I feel so blessed each time I see them. When I am around them, I briefly forget about having CP and a spinal cord injury." With his many trials, Pete has also received another blessing. "I met a wonderful lady, Chris, about a year ago, and she has brought real joy into my life. I used to dread weekends when others had a significant other to spend their time with. Now I find myself looking forward to the moments that I can share with Chris."

Even with the new hardships he faces as a result of his accident, Pete does not regret the joy and years of independence that biking gave him. In fact, there are still many mornings when he looks out the window, and thinks today would be a great day to go biking. "I loved having the wind in my face," he says, somewhat wistfully, then adds with characteristic humor, "although being so low to the ground did have some major disadvantages, too, (like) that nice, flesh aroma that hovered some warm summer days from roadkill."

Few things have given Pete the sense of completeness and equality that biking gave him. "It was satisfying for me to grind slowly up a very long and steep hill and pass by other bikers who had to get off and walk their bikes up. It was as if I had discovered the place where my inner strength lay. Often times, I would easily pass them on the downhill stretch because of the aerodynamics of my recumbent. At those moments, I would simply smile and wonder what they thought as I smoothly sailed on by."

Despite the hard work, smooth sailing comes easier to Pete Zeidner than self-pity. If there's one message he would like to convey to individuals who struggle dally with cerebral palsy, it's this: "I believe you need to give 200 percent to what you are trying to accomplish. You need to make the extra effort to let people know that you do not feel as if society owes you something because you have a disability. I believe that if you give of yourself, you get a lot more in return."

To find out how you can participate in an upcoming bike-a-thon or support cerebral palsy research through the Pedal with Pete Foundation, contact:

Pedal with Pete
P.O. Box 274
Kent, Ohio 44240
1-800-304-PETE
(fax): 330-673-1240,
E-mall: [e-mail]
Web site: www.pedalwithpete.com

Pete talks about his recumbent bike

"My first recumbent bike was made by Peach Ridge Pedal Power in Athens, Ohio. The man who made it was a retired engineer who loved to tinker. He built twelve of these recumbents before building mine in a garage behind his house. I needed to have my brother drive me to Athens several times to try out the bike and different adaptations during the course of its construction. For example, the brake handle had to be made larger and run parallel to the handlebars in order to make braking easier for me. Hydraulic brakes were used. The shifters for the gears were longer than is usual and were located close by within my small area of reach. However, shifting was still a great difficulty for me.

"After eight years or so, that bike racked up over 15,000 miles. At that point, it definitely began showing its wear. In the meantime, the salesman of the recumbent had started his own company called Comfort Cycle. He very graciously gave me one of his new bikes, which was two feet shorter that my first eight-foot-long bike. After similar modifications were introduced, the new recumbent was easier for me to get on and off. Since the new bike was also ten pounds lighter, I was able to go faster and travel farther distances. It was also easier to transport. Unfortunately, it was not equipped with a roll bar, which could have made my accident less severe."

Anne Kirkland is a freelance writer who lives in Amesbury, Massachusetts.