Family searches for miracle cure for spinal cord injury
By Patricia Anstett
Detroit Free Press
Sunday, January 08, 2006
DETROIT Laura Jackson doesn't want to ait for a cure.
Paralyzed in May 2003 while performing a backward flip in a
cheerleading stunt, Laura, 16, underwent experimental surgery in
China 18 months later and pursues therapies she and her parents,
Daryl and Melody, find promising.
Eric Seals
DETROIT FREE PRESS
Laura Jackson, 16, of Livonia, Mich., lies in her bed as her father,
Daryl Jackson, and nurse Carol Lindman work on getting her IV ready
before her laser treatment. She was paralyzed in a cheerleading
accident.
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 search for a miracle treatment 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. He and his wife own a communications firm in
Detroit and live in a large, split-level home, 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 much for only 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. 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 "gave us zero hope," said her father. They 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 uses embryonic cells from aborted fetuses,
which he transplants directly above and below a spinal cord injury
site.
After her surgery, Laura 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 her the latest
technology, including an innovative upside-down exercise bike, a
portable electrical stimulation unit and a handheld laser for
regenerating nerves.
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 paralyzed 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:
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 private insurance plans cover it. (941) 545-7580;
www.secondstepinc.com.
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 are used in conjunction
with walkers. $8,000 to $14,000 for a pair. Insurance coverage
varies. www.messerorthopedics.com or call (616) 863-3330
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. $11,000.
www.gigermd.com.
Crutches Loftstrand crutches have 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, (866) 813-0761.
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/Anders.htm. Cost: $9,000. Details at
www.thorlaser.com, (877) 427-3229.