From Doctor to NRN Patient
By: Janelle LoBello
Name: Stanley Yoo
When Stanley Yoo, 31, landed on his neck while warming up on a trampoline before an adult gymnastics class, he knew all too well what had really happened.
At that time, Yoo was a resident doctor in Temple University's Physical Medicine and Rehabilitation program (PM&R) in Philadelphia, PA. PM&R provides evaluation and comprehensive treatment for patients with physical impairments.
Yoo initially chose the PM&R career path because of his athletic nature. Considering himself a "gym rat," and trained in Tae Kwon Do since the age of 13, he began taking gymnastics his last year of medical school. Trying to merge his career with his passions, Yoo ultimately aimed to be in the field of sports/musculoskeletal medicine.
As a doctor, Yoo was immediately aware of his situation. "I understood the time course and healing," says Yoo. "If recovery comes within a year or two, it is better, there is more potential. I understood what to check for right away. Even when it first happened, I was on the trampoline testing my muscles, moving my arms."
Having first undergone surgery within two hours of his accident at nearby Thomas Jefferson University Hospital, Yoo was at the hospital's partner rehab facility, Magee Rehabilitation within one week of his accident.
The NeuroRecovery Network is a cooperative network of cutting-edge rehabilitation centers designed to provide and develop therapies to promote functional recovery and improve the health and quality of life of people living with paralysis.
Locomotor training is the method of physical therapy currently deployed by the NRN. In locomotor training sessions the body of the paralyzed patient is suspended in a harness over a treadmill, while specially-trained therapists move their legs to simulate walking. As the patient regains functioning, he moves from the treadmill to conventional walking. No two NRN patients will respond in exactly the same way, nor is each patient likely to experience the entire range of possible changes and improvements.
Before beginning locomotor training, Yoo was in a wheelchair with trace movement in his left leg, and no movement in his right leg. "I could extend my hip and knee," explains Yoo of his left leg. "But only while lying on my side with my leg on a skate to eliminate the effects of gravity and friction."
"It makes good sense that if you mimic natural patterns of walking as much as you can, you're going to rebuild those pathways," explains Yoo, having done locomotor training at Magee for almost four months. "The more normal you make it, the more normal it will be in the future. If you're being carried over the ground, you're not going to re-learn to walk the same way you walked before."
Yoo had functional strength in his upper extremities, but his hand strength was extremely limited. "I was using assistive devices to feed," says Yoo, "such as a cuff to hold spoons and forks, since I couldn't hold them myself. I needed help dressing and bathing."
After Yoo finished his locomotor training in March 2009, he was walking either with two single point canes, mostly for balance, or walking completely unaided. "At that point, I was living independently again," says Yoo. "My hand function had improved to where I could dress, groom, bath, and hold utensils to eat again."
A little more than 16 months after his injury, Yoo is working out regularly at the gym performing lower impact exercises and some jogging. "My overall grip strength has improved to the point where I can actually do pull-ups now," explains Yoo. "But the strength in the finer, intrinsic muscles in my hands is still significantly impaired to the point where using chopsticks, which was something I grew up doing and was proficient in prior to my injury, is still extremely challenging."
Yoo's main goal is improvement and to keep pushing in the right direction. "There is no doubt locomotor training made my recovery more natural," says Yoo. "It definitely happened more quickly. The best way to learn to walk is to walk."
In the patient's shoes
"This was the biggest personal loss in my life," explains Yoo. "It's a little over a year later and I still have some emotional and physical struggles. There are times when it is too tough to deal with."
Having spent four months in therapy, Yoo is more aware than ever that what would be seemingly small victories to everyone else, are immeasurable to the actual patient. "Function is determined by how much you put into it," says Yoo. "Going from doing flips in the air to pain in my back when I walk hardly makes you feel like yourself. It's about changing focus, reinventing yourself."
"Any victory, big or small, keeps alive that hope for SCI patients that there will one day be a cure," explains Yoo. "Every advance in pharmacology, mechanical technology, stem cell therapy, while they might not offer a complete cure, will undoubtedly have huge implications in the individual lives of spinal cord injured patients."
To really understand the life of a someone living with a spinal cord injury, Yoo says, "I would urge any non-spinal cord injured individual to take a minute to reflect on all the things that so many of us take for granted -- the ability to feel a loved one's touch, to have control over your own bowel and bladder, to move your body freely, to stand up and walk, to cough when you have to, or even simply to breath on your own. Then, imagine losing any one of those things and ask what you wouldn't do to get that back. SCI patients often have several of these deficits, sometimes all, and occasionally even more. So, while a complete cure might be a long time coming, simply improving some of the sequels of the disease is, and always will be, progress worth making."
Available to download: Over 100 PDF fact sheets organized alphabetically on various topics from Aging with SCI to Wish Granting Agencies.
Also contains disability resources for each of the 50 United States and 31 countries (where possible the country fact sheets are in the native language of that country).
The Alan T Brown Foundation to Cure ParalysisFormed to support research in spinal cord injury.
American Academy of Physical Medicine and RehabilitationAs the premier medical society for the specialty of physical medicine and rehabilitation, AAPM&R is the only organization exclusively serving the needs of practicing PM&R physicians. With more than 7,500 members, the Academy represents more than 87 percent of US physiatrists and international colleagues from 37 countries.
American Physical Therapy Association (APTA)Main membership organization for the PT profession, furthering the prevention, diagnosis and treatment of movement dysfunctions.
The Australian Spinal Research FoundationFunds research for treatments of spinal cord injuries.
American Therapeutic Recreation Association (ATRA)ATRA is the largest, national membership organization representing the interests and need of recreational therapists. Recreational therapists are health care providers using recreational therapy interventions for improved functioning of individuals with illness or disabling conditions.
American Speech-Language-Hearing AssociationASHA is the professional association for audiologists, speech-language pathologists, as well as speech, language and hearing scientists.
The American Congress of RehabilitationServes people with disabling conditions by promoting rehabilitation research and the transfer of technology.
Association of Rehabilitation NursesPromotes and accredits rehab nurses and promotes the philosophy of care of the nursing professional.
The Amyotrophic Lateral Sclerosis Association (ALS)Funds numerous projects to develop treatments for ALS (Lou Gehrig's disease).
American Occupational Therapy Association (AOTA)Advances the field of occupational therapy through standard-setting, advocacy, education, and research.
Aquaticnet.comTherapists. Instructors. Managers. To all in the Aquatics industry. This is your single online clearinghouse of aquatic therapy and fitness information. Why re-create the (aquatic therapy) wheel? We are The Aquatic Therapy Command Center.
Clinical TrialsAn internet resource with current listings of all federally supported clinical trials in the U.S., sorted by disease or condition, location, treatment or sponsor. Developed by the National Library of Medicine.
The Centre for Ambulatory Rehabilitation Research and Education (CARRE)Based in Alberta, Canada, CARRE is a research translational facility that examines various treatments for walking after spinal cord injury.
Center WatchClinical trials listing of industry professionals, patients and info.
Clinical Trials: Ambulation ProgramsList of ambulation programs currently seeking volunteers.
Clinical Trials: Locomotor (treadmill) TrainingList of trials involving locomotor (treadmill) training.
Dana FoundationA nonprofit organization that provides reliable, accessible information on brain and spinal cord research.
The Department of Veterans Affairs (VA)Funds research to develop therapies for many conditions related to paralysis, including traumatic injury and chronic disease.
The International Spinal Research TrustISRT is the only charity based in the United Kingdom dedicated to funding research to end the permanence of paralysis caused by spinal cord injury.
International Campaign for Cures of Spinal Cord Injury ParalysisA group of organizations around the world that together fund about $25 million a year in SCI research. The members include: the Miami Project to Cure Paralysis, Christopher Reeve Paralysis Foundation, Australasian and International Spinal Research Trusts, Paralyzed Veterans of America, Rick Hansen Institute and Kent Waldrep National Paralysis Foundation.
High Hopes Head Injury ProgramThe High Hopes Head Injury Program was started in 1975, as a result of tough hard work and need of several families. This one-of-a-kind non-profit charitable organization was dedicated to the rehabilitation and retraining of their loved ones who had been devastated by traumatic head injuries.
Kosair Charities Center for Pediatric NeuroRecovery at the University of LouisvilleThe Kosair Charities Center for Pediatric NeuroRecovery provides activity-based therapies to promote recovery from neurologic injury in children; conducts research to enhance recovery; and trains families, practitioners and scientists to maximize recovery and improve the quality of life for children and their families. In short, we are here to help kids kick paralysis and through science have every reason to hope.
Lokomat at Sister KennyLokomat® is a robot-assisted treadmill that supports a patient in an upright position while moving the legs through a normal walking pattern – even if a patient is unable to move his or her legs independently.
Model Systems Centers for Spinal Cord InjuryA federally funded program of 14 specialty medical and/or rehabilitation centers across the US. The SCI Care System collects and submits acute, rehabilitation and follow-up (annual, long-term post-discharge) data on SCI patients who received care in the these centers following injury.
The Mike Utley FoundationProvides financial support of selected research, rehabilitation and education programs on spinal cord injuries.
Myelin ProjectFunds research for diseases related to loss of myelin (a fatty insulation on nerve fibers) including multiple Sclerosis and leukodystrophy.
Lokomat Program at Rehabilitation Institute of ChicagoThe Rehabilitation Institute of Chicago (RIC) provides robot-assisted walking therapy using the Lokomat® to help people improve their ability to walk after disability caused by brain and spinal cord injuries, stroke or neurological and orthopedic conditions.
The National Center for Medical Rehabilitation ResearchNCMRR supports research on enhancing the daily functioning of people with disabilities and hopes to improve mobility, assistive technology and therapies.
National Rehabilitation Association (NRA)Not long after Congress passed the National Rehabilitation Act of 1920, the National Rehabilitation Association (NRA) began its commitment to persons with disabilities. As the oldest and strongest advocate for the rights of persons with disabilities, NRA's mission is to provide advocacy, awareness and career advancement for professionals in the fields of rehabilitation. Their members include rehab counselors, physical, speech and occupational therapists, job trainers, consultants, independent living instructors and other professionals involved in the advocacy of programs and services for people with disabilities.
National Rehabilitation Information Center for Independence (NARIC)NARIC offers a range of services, from quick information and referral to extensive database searches of the latest disability and rehabilitation research. They also offer a number of publications, including directories, guides and statistical reports.
The National Institute on Disability and Rehabilitation ResearchNIDRR supports research focused on improving the quality of life for people with disabilities.
The National MS SocietyThe National MS Society is a collective of passionate individuals who want to do something about MS now -- to move together toward a world free of multiple sclerosis. MS stops people from moving. We exist to make sure it doesn't.
National Institute of Neurological Disorders and StrokeProvides research overviews for all diseases and conditions related to paralysis.
The Paralysis Project of AmericaBased in Los Angeles, The Paralysis Project of America funds selected scientific and clinical studies that focus on spinal cord repair and regeneration.
RT 300 FES BikeRTI designs and markets innovative electrical stimulation ergometers to help people with a neurological impairment achieve their full potential.
Reeve Foundation NeuroRecovery Network (NRN)The Reeve Foundation NRN is a perfect example of basic science being translated to the clinic and changing lives. Funded by the Reeve Foundation through a cooperative agreement with the Centers for Disease Control and Prevention, it is a network of cutting-edge rehabilitation centers whose staffs have been trained in intensive activity-based treatments.
The Rick Hansen Man in Motion FoundationCreated in Canada in 1988 to support spinal cord injury research, as well as wheelchair sport, injury prevention and rehabilitation programs.
SpinalCure AustraliaEstablished in 1994 to fund scientific research to find a cure for paralysis.
Sprint AquaticsOver the years Rothhammer International, commonly referred to as Sprint Aquatics, has been designing and patenting products that continue to revolutionize the aquatic industry. As the current owner, Laurel Maas's primary goal for Sprint Rothhammer was and continues to be creating products that meet the needs of those who use the pool as a form of physical therapy, training, and recreation.
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