Kristy Henderson, Peer Mentor, Offers 'Unique Perspective' for those Living with Paralysis
By: Nate Herpich
In 2008, Kristy Henderson, a working physician in the prime of her career, was diagnosed with a uniquely aggressive form of multiple sclerosis (MS). It was so aggressive, in fact, that her doctors asked her to not attend MS support group meetings fearing that she'd scare other newly diagnosed patients. Six years later, Kristy is now living with quadriplegia.
In the weeks and months following her diagnosis, Kristy felt lost. Searching for people with similar experiences to talk to, Kristy found her way to the Brooks Rehabilitation Hospital, a Christopher & Dana Reeve Foundation partner, which has provided peer mentoring since 2002 (as the Reeve Foundation's first partner in the PFSP, Brooks contributed to the training curriculum Reeve uses in its own peer mentor trainings).
At Brooks, Kristy found support in her own peer mentor Luther Delp, who is living with spinal cord injury (SCI) following a motorcycle accident. Luther provided Kristy with much needed perspective on living with paralysis, and encouraged her to take part in Brooks' adaptive sports program. Kristy has taken quickly to sports, joining the power soccer team, and recently finishing third in the 2014 Brooks Challenge Mile. Check out the video below.
But while sports have provided a much needed outlet for herself, Kristy has made deep inroads in another way: as a vocal member of the community of people living with paralysis in the Jacksonville area. She has mined contacts within her field, both as a doctor and retired military, to help grow the network of potential mentors in Florida on behalf of the Reeve Foundation's Peer and Family Support Program (PFSP), while also serving as a mentor to peers herself.
"Dr. Henderson offers a unique perspective," says Steve Kenny, Southeast Regional Coordinator of the PFSP. "She has the credentials and contacts in the medical field to share our programs with those who can get the word out. Since last September, she's brought in more peers than anyone else, and she's made inroads with organizations to encourage them to take advantage of our program."
Kristy has met with a prominent neurologist at the Naval Air Station in Jacksonville, Veterans Affairs programs in Gainesville and Jacksonville, and doctors at St. Vincent's Medical Center to let her colleagues know about the PFSP's services. Many had no idea, she says, and are encouraged to be able to have the opportunity to refer peers in the future. She also introduced the PFSP to the MS Society in Jacksonville, starting another synergistic relationship between groups whose members face similar challenges. Kristy keeps PFSP books and pamphlets in her car, and says that she has had conversations with people in grocery store parking lots about the program.
"It would have been very useful to have know someone who was going through something similar to my own experience, after I was newly diagnosed," she explains. "So I'm doing the best I can to provide a voice to as many people as I can."
Kristy, who is married and a mother of four, continues to work as a part-time professor for the University of Illinois-Chicago, teaching an online course in health informatics. But the online connection to people, she says, isn't the same. Peer mentoring is a way for her to get back some of what she lost when she could no longer work as a physician; to get back to that human connection that she so loves.
"I've been teaching my whole life, and mentoring allows me to continue to connect with and help people," she says. "Even when I may not have the answer, I can usually find someone within the Reeve Foundation community to help out. This is deeply satisfying."
Apply to become a peer mentor
The Adaptive Sports Center (ASC)A non-profit organization located in Colorado that provides year-round recreation activities for people with disabilities and their families.
American Association of AdaptedSportWorks to enhance the health, independence and self-sufficiency of youths with physical disabilities by facilitating adapted sports programs in local communities, in cooperation with schools, parks and recreation, YMCA/YWCAs, hospitals, parents and other groups.
American Association of SCI Psychologists and Social WorkersPromote research to improve quality of care and works to improve skills and techniques of members.
Blaze Sports501(c)(3) nonprofit organization that advances the lives of youth and adults with physical disability through sport and healthy lifestyles. BlazeSports provides sports training, competitions, summer camps and other sports and recreational opportunities for youth and adults with spinal cord injury, spina bifida, cerebral palsy, traumatic brain injury, muscular dystrophy, amputation, visual impairment or blindness as well as other physical disabilities.
Center for Research on Women with Disabilities (CROWD)Dept of Physical Medicine and Rehab Services at Baylor College of Medicine.
Caregiver.comOffers a directory of support groups for caregivers.
Disabled Sports USAOffers nationwide sports rehabilitation programs to anyone with a permanent physical disability. Activities include winter skiing, water sports, summer and winter competitions, fitness and special sports events. DSUSA, as a member of the U.S. Olympic Committee, is the governing body for winter sports for all athletes with disabilities, and for summer sports for amputee athletes. Nationwide chapter network of sports and rec programs.
The Handicapped Scuba AssociationPromotes the physical and social well being of people with disabilities through the exhilarating sport of scuba diving.
Hand CyclingWhether for fitness, serious competition, or pure recreation, here's a sport that can be enjoyed by many and provide quite the "ride" at the same time.
International Paralympic CommitteeThe International Paralympic Committee (IPC) is the global governing body of the Paralympic Movement. The IPC organizes the Summer and Winter Paralympic Games, and serves as the International Federation for nine sports, for which it supervises and co-ordinates the World Championships and other competitions.
Life Rolls OnLRO is the story of able-bodied individuals, working in concert with those with spinal cord injury, to motivate each other with the inspirational message of achievement in the face of extreme adversity. Life Rolls On utilizes action sports through our flagship program, They Will Surf Again, which pushes the boundary of possibility for those with spinal cord injury (SCI).
Mobile WomenArticles, resources, online forum for women with disabilities especially wheelchair users.
National Wheelchair Basketball AssociationBasketball is perhaps the oldest organized sport for athletes in wheelchairs. The game is fast and fun, and played in dozens of cities across the U.S.
The National Center on AccessibilityNSCD provides recreation for children and adults with disabilities. In addition to recreational downhill and cross-country skiing, snowboarding and snowshoeing, NSCD provides year-round competition training to ski racers with disabilities. Summer recreation opportunities include biking, hiking, in-line skating, sailing, therapeutic horseback riding, white water rafting, baseball, fishing, rock climbing for the blind, and camping.
NJ Self-Help Group ClearinghouseEnables people to help themselves with self-help groups.
Quad RugbyFormerly known as murderball, Quad Rugby is a game for quads who can push a chair. Fast, rough and very competitive.
University of Alabama at BirminghamOffers an information sheet (Info Sheet #11) on bladder care and management.
The United States Tennis AssociationTennis has been adapted for the wheelchair player: the ball can bounce two times. This allows chair-players to give standup players a run for the their money. The sport is growing fast and is very competitive at the elite level. Click on "community tennis."
U.S. ParalympicsA division of the U.S. Olympic Committee, it is dedicated to becoming the world leader in the Paralympic sports movement and promoting excellence in the lives of people with physical disabilities through education, sports programs and partnerships with community organizations, medical facilities and government agencies.
World T.E.A.M. SportsUnites people with and without disabilities through unique athletic events taking place all over the world.
Paralysis Resource Center The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm ET. You may also schedule a call or send a message online.
Reeve Foundation Online Paralysis Community Connecting people living with paralysis, families, friends and caregivers so we can share support, experience, knowledge, and hope.
Quality of Life Grants DatabaseFind resources within the PRC Quality of Life Grants Database. Search by Zip Code, State or an Entire Category.
Library Books and VideosFind resources within the PRC library catalog.
This FREE 442 page book is a comprehensive information tool for individuals living with paralysis and for their caregivers. Request or download your copy now!
Check out programs in your area on our one-of-a kind online searchable Quality of Life program database. You can search by location or topic. GO