DETROIT – Laura Jackson doesn’t want to wait for a cure.
Paralyzed in May 2003 while performing a backward flip in a cheerleading stunt, Laura, 16, underwent experimental surgery in China late last year and pursues therapies she and her parents, Daryl and Melody, find promising.
Her story illustrates how some people with spinal cord injuries and their families are devising their own solutions and remedies, even building expensive home gyms. Much like cancer patients and thousands of others who search abroad for cures and treatments, they face questions and skepticism from the medical establishment.
But to them, the science needed to establish safe results takes too long.
“Doctors called me a quack before I went to China and now they call me half a quack,” Daryl Jackson said. “They thought I’d kill her. Well, I didn’t.”
The journey is costly and time-consuming.
Jackson spends at least an hour a day on the Internet reading research on spinal cord injuries. When he has a question, he calls or e-mails the experts. “We’re definitely in the loop on this,” he said. He and his wife own a Rochester Hills communications firm that distributes Motorola radio systems in metro Detroit. They live in a large, split-level home in a Livonia, Mich., subdivision, but Laura’s injury clearly taxes even their income.
As small business owners, the Jacksons are self-insured with a plan that does not pay for any therapy, adaptive equipment or experimental surgery.
Expenses for the trip to China, adaptations to their home and equipment costs now total more than $150,000, all from their savings and fundraisers.
Some of the biggest expenses: $40,000 for the trip to China, a $60,000 elevator and $4,000 lift to help Laura in and out of bed, $9,000 for a low-powered laser and $3,500 for an electrical stimulation unit.
“Whatever it costs to get her walking will be worth it,” Jackson said.
Specialists in the field remain largely skeptical of the experimental surgeries for spinal cord repair (now performed only outside the United States) and some of the technology.
Dr. David Gater Jr., professor of spinal cord medicine at the University of Michigan, said patients are Prone to damaging their muscles, developing arthritis or experiencing overuse problems from too much therapy. Laser applications could break down the skin and “put people at risk of pressure ulcers” or worse injury problems, he said.
The other issue is giving up too many of life’s pleasure for marginal gains, he said. “What about the quality of life, education, being productive in society?” he asks. “All these things can be tossed out in pursuit of something that will provide a sub-optimal output.”
Laura and her family see it differently. Doctors “gave us zero hope,” said her father.
His daughter continues to hang out with friends, and she enjoys activities such as shopping and watching TV.
Laura’s injury is severe. She is paralyzed from her neck down and requires a Ventilator to breathe. At the time of her injury, she couldn’t sit without a headrest supporting her neck in her wheelchair. She wasted away to 90 pounds from 120.
Doctors told the family she would never walk and might not even be able to talk.
The Jacksons’ first big decision was to travel to Beijing for surgery with Dr. Hongyun Huang. Since 2001, he has treated more than 600 patients, mostly people with spinal cord injuries from the United States.
Huang obtains embryonic cells from aborted fetuses called olfactory ensheathing Glial Cells. They are derived from the nasal cavity and transplanted directly above and below a spinal cord injury site.
After the surgery, Laura, a junior at Livonia Stevenson High School, began going off her ventilator for a few minutes a day, her father said. She’s now up to 30 minutes off the ventilator when she exercises, he said.
He has bought the latest technology for Laura, including an innovative upside-down exercise bike, a portable electrical stimulation unit and a handheld laser.
Every day for 20 minutes, Jackson, an electrical engineer, uses the low-powered diode laser unit on his daughter. He bought it after reading about the work of a Bethesda, Md., laser pioneer, Dr. Juanita Anders.
Laura works out two days a week at the Recovery Project, an intensive Rehabilitation facility at the Livonia YMCA. The other five days, therapists or trainers visit her.
A year after her surgery, Laura has grown stronger, gained 25 pounds and has more stamina. She is dependent on a ventilator and a wheelchair, but she can move her shoulders, raise her legs with the help of an electrical stimulation unit triggering muscle movement in her calves and sit on a mat with a large exercise ball behind her.
“Laura couldn’t take her head off the headrest of her chair” after her accident, her father said.
Her goal continues to be focused on walking at her high school graduation.
“I’m going to walk,” Laura said.
Technology charges forward
Technology to help disabled people move and walk is changing rapidly.
“It’s almost like computers,” said Brad Shebib, Physical Therapist for Wright & Fillippis, a Rochester Hills, Mich., medical device company. “By next week, the technology seems obsolete.”
Here’s a brief summary of some of the new devices being used for rehabilitation of people with spinal cord injuries:
Gait-training devices. Mobile frames with harness devices help people regain gait and balance in a progression of physical activities. One of the most advanced systems is made by Second Step for $5,150. Some auto and private insurance plans cover it. 941-545-7580; www.secondstepinc.com.
In Michigan and Ohio, Messer Orthopedics handles distribution. www.messerorthopedics.com or call 616-863-3330.
Leg braces. Unlike the stiff models from decades ago, the newest brands are lightweight and flexible. One type, KAFO braces (knee, ankle, foot orthosis) are carbon-fiber with a locking knee mechanism that helps move the leg when a patients is walking. Orthotist Bill Messer designs each pair individually. They also can be shortened once mobility is established. They are used in conjunction with walkers. $8,000 to $14,000 for a pair. Insurance coverage varies. Contact information for Messer Orthopedics listed above.
Exercise bicycles and treadmills. There are many types, including models attached to electrical stimulation units. Another approach to locomotion devices is GigerMD, a machine used for people with spinal cord and brain injuries, Parkinson’s disease and other conditions. It helps move all four limbs while a patient is lying down, taking the load off the back. $11,000. Information: www.gigermd.com.
Crutches. Loftstrand crutches are a type of crutch with forearm attachments that help with walking and balance activities. $97. Widely available, including through Wright & Filippis and other medical equipment companies.
Ibot wheelchairs. A chair that climbs stairs, moves on a variety of terrains, and elevates or lowers for eye-level contact or to roll under desks. Cost varies with individual requirements, but the chair is about $26,100 and is covered fully or partly by some insurance plans. www.ibotnow.com .
Laser: A low-powered diode laser used by Juanita Anders, a Bethesda, Md., laser pioneer. Her lab experiments regenerating nerve connections in injured animals are described on her Web site: http://usuhs.mil/nes/. Cost: $9,000. Details at www.thorlaser.com.
Detroit Free Press