Wednesday, April 14, 2004

Bob Smith: Wheel-chair bound -- but determined

He had surgery in China after being paralyzed in a diving accident. ?Every week is better,? he says of his life today.

April 13, 2004 - BY PATRICIA ANSTETT - FREE PRESS MEDICAL WRITER

The first American to undergo experimental surgery in China for a spinal cord injury is making steady progress and remains hopeful about his recovery.

"Every week is better than the last," says Bob Smith, 46, of Harrison Township.

These days, Smith can shave, take off his shirt, grab milk from the refrigerator and pour himself a glass. He's starting to take steps on a treadmill and is able to lift his buttocks off an exercise mat. He couldn't do any of that before his surgery Oct. 23.

Recently, he surprised his longtime card-playing friends by being able to deal a deck of cards.

"I'm quite a ways ahead," says Smith, a onetime Chevy salesman at Gordon Chevrolet in Garden City.

He says he can't wait for the day when he can reach across the card table and pick up a pot of winnings.

Smith, who was paralyzed in a July 4, 1999, diving accident in Lake St. Clair, has become a symbol of hope for the nation's 400,000 people with spinal cord injuries.

He underwent a procedure that transplanted 10 million olfactory ensheathing glia (OEG) cells from the ridge of his nose to the site of his spinal cord injury. These cells have protective properties that help shore up nerve growth and connections.

They hold promise for people with spinal cord injuries, Parkinson's disease, Lou Gehrig's disease and degenerative spinal cord diseases. Still, experts urge caution because their use is largely unstudied.

That makes for even more intense following of Smith's progress.

Sharing pain and progress

Thousands are following Handi Bob's OEG Surgery Report, written by Smith for a leading Web site for people with spinal cord injuries.

He posts his progress reports twice a month at the CareCommunity Web site, www.carecure.atinfopop.com.Smith heard about the China operation through the Web site and is committed to sharing as much information about his progress as he can.

"My philosophy is, if we have guys going to Iraq fighting for what may not be a good idea, why can't I do this for other people?," he says.

Smith shares details some might consider personal. Like his renewed ability to, well, pass gas.

"People just don't realize how much that can affect your life," Smith wrote in his March 23 Web update. "I now have very little, if any, stomach discomfort."

Smith has tried to make the most of any gains he may achieve from the surgery with an intense physical therapy program. He's midway through his second series of 30 physical therapy visits approved and paid for by the Health Alliance Plan.

His paralysis is from the middle of his chest down, a so-called C5, Asia C injury. The classification describes the site and severity of his injury. Asia A is the most severe.

A day in therapy

Smith's therapy is a workout for both him and his longtime therapist, Betty Lauhoff, at the Rehabilitation Institute of Michigan's Warren center. By August, the institute plans to open a new Spinal Cord Recovery Center at its Detroit headquarters to offer some of these newer therapies.

One involves a machine with a harness that hoists him over a treadmill. Its aim is to trigger a type of memory in the nerve cells in Smith's spine to remember tasks like walking.

The harness, strapped around Smith's groin, makes him look like a World War II parachute jumper.

Therapy is no place for big egos.

"There we go," says Lauhoff at the start of a recent session at the Warren center.

"Piece of cake," Smith says. The harness lifts Smith's 230-pound, 6-foot-3 frame above a treadmill, and Smith and his team take one arduous step after another.

After initially needing therapists to move both his feet onto the treadmill, Smith now can move both feet slowly with little assistance. "And my endurance has improved dramatically," he writes on his Web update. "The first time, five minutes of standing was tough."

Balance is part of the learning process.

"I lost the feeling of shifting my weight side to side," Smith says.

"I'm relearning how to do that."

Some weeks, Smith feels more progress than others.

"The rule in my house is: If Betty's excited it must be good," Smith says of his therapist.

Lauhoff helps Smith do a series of exercises on a large, low table covered with a mat. She asks him to see whether he can do what he did the week before: raise his buttocks from the mat and hold for a count of 10.

Smith does the exercise several times.

He puffs and takes a break before arm wrestling with Lauhoff, an exercise to build arm strength.

He says he'll be able to go home and tell Karen, his wife of 23 years, and his three children that "Betty was happy today."

Smith's tests show small signs of improved muscle function in his legs. He hopes his insurance continues to pay for his rehabilitation, an issue many patients face.

"When he gets more muscle function below the level where his injury was, he'll be better prepared for walking," Lauhoff says.

In the meantime, Smith accepts whatever gains he achieves.

"People don't believe it," he says. "I'm here to help them believe."
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Erica Nader: Wheel-chair bound -- but determined

An air-bag injury took away her ability to walk. An operation in Portugal has put her on the long road to recovery.

BY PATRICIA ANSTETT - FREE PRESS MEDICAL WRITER

Erica Nader awakens each day wondering about the possibilities.

Will she be able to move her hand a little more?

Will today be one of the days she feels little impulses -- a pins-and-needles sensation that she thinks may signal new life in her spinal cord?

Or will it be a day she needs to take a day off from the arduous physical therapy that has consumed her life for more than two years?

Nader, 26, of Farmington Hills, is one of the first 20 Americans to undergo an experimental operation in Portugal to aid functional recovery after a spinal cord injury.

She was injured in a 2001 auto accident on the night of her parents' 25th wedding anniversary party. Her brother was driving as they headed through the family's dark, winding Farmington Hills subdivision and the car went off the road.

An air bag hit Nader and paralyzed her from the middle of her chest down, she says.

Her diagnosis: C6 injury, Asia-A, to distinguish the exact site of her injury and the severity of it. She had no finger movements and only limited ability to move her right arm.

"The grimmest diagnosis you can get is Asia A," Nader says.

A tough first year

Nader struggled the first year, as many people do after a spinal cord injury.

The rehabilitation program in which she participated didn't provide "the type of recovery I wanted." Beyond teaching daily skills, there was little hope or willingness to push further, she says.

"For most people with a spinal cord injury, you are told from the beginning what you can do to be functional. They help you get the products you need and help you get on with your life. You hear there's a 3- to 5-percent chance of walking again, but even so, you don't want to think too much about it or give yourself false hope and end up being crushed in the end. That, to me, never made sense."

Nader had gone from living an independent life in California as an activist with a peace group to living at home with her parents and being dependent on their help.

One day, she broke down crying. She remembers her dad, Fred, an executive with Southfield's Kenmar Corp., telling her: "You can make this be whatever you want it to be. You have to set goals for yourself and look in the mirror every day and see what you are doing."

Afterward, Nader got serious about undergoing extensive rehabilitation. She looked for options. Her search for resources led her to Dr. Carlos Lima of Lisbon, Portugal. She underwent the experimental procedure in March 2003.

Risks weren't a concern
In the surgery, doctors take the tissue from the lining of the olfactory bulb at the ridge of the nose and transplant segments of the tissue into the injury site.

Little is known about risks of the surgery because there are no good studies or even observational reports of how Portuguese patients have fared.

The risks didn't bother Nader.

The notion of living the rest of her life in a wheelchair dependent on others did, she says.

Almost immediately, upon awakening from surgery, Nader says she felt different. Her skin felt warmer, particularly her legs and toes. They weren't cold, as they had been since her injury.

Family members who touched her noticed the warmer skin, too.

Since then, she has regained hand and some upper body movement by teaming gains from surgery with an aggressive physical therapy program.

Initially, she went five days a week, three hours a day, to Project Walk in Carlsbad, Calif., outside San Diego.

By last summer, she had tapered the therapy to three days a week, three hours a day.

She also underwent acupuncture, hand therapy, and one hour of pool therapy three days a week. Her mother, Rita, moved with her to San Diego to help.

"We were putting 900 miles on a car a week driving all over the place," Nader says.

She will resume therapy soon at the Rehabilitation Institute of Michigan's new Spinal Cord Recovery Center in Detroit. She moved back to Farmington Hills earlier this month. .

The center will be home to the latest generation of equipment for the rehabilitation of spinal cord injuries. It will include devices like seated bicycles that send electrical signals into muscles making them move pedals.

Nader says she has seen her biggest gains in the past three to five months. Some of the most noticeable differences are in her spasticity -- feelings previously considered undesirable by some medical professionals but ones that may be broader signals of new growth within the spinal cord.

"Having that muscular spasticity allows me to strengthen my back and abdominal muscles," Nader says. "It's the beginning of a renewal process. What I feel going on is almost on a circuitry level. I feel something one day, and the next day it doesn't feel that way. Kind of like a buzzing."

She noticed improvements in proprioception, the inner sense of consciousness that alerts the body to when it's sitting erect, falling down or moving in some way. That sense helps people stand erect or ride a bike.

Nader wants to walk again. Her No. 1 goal these days is to build herself up enough to move upright from her wheelchair to a walker.

Nader says she is encouraged by changes on her MRI (magnetic imaging resonance) tests that show tissue growing in the site of her injury. "Blood is flowing through it," Nader says. "The MRI doesn't like a person with a spinal cord injury.

She awaits more gains. "This is exactly what I expected. A boost. Not running the Boston Marathon, but a very slow and arduous recovery . . . a kick start.

"I tell other injured people who ask me why I do what I do: 'I don't know how much recovery you can get. I don't know if Dr. Lima's procedure is going to make me walk again. But everything I do that helps -- great. That's the goal.' "
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SPINAL INJURY STRIDES: New therapy center to open in Detroit

BY PATRICIA ANSTETT - FREE PRESS MEDICAL WRITER

Detroit's Rehabilitation Institute of Michigan will open a center this summer, unlike any in the United States, that will offer new therapies to help spinal cord injury patients regain some sensation and movement after years of paralysis. It also will evaluate hundreds of spinal cord patients for two experimental operations abroad and oversee their rehabilitation in Detroit.

"We hope the center gives people open access to the latest medicines and technologies" for spinal cord treatment, said Dr. Steven Hinderer, Detroit Medical Center specialist in chief and director of the institute's Center for Spinal Cord Injury Recovery.

The center is scheduled to open in August at the Rehabilitation Institute's new Brasza Outpatient Center on the Detroit Medical Center campus, north of Detroit's downtown.

The institute generated excitement last fall among the nation's spinal cord community when it announced plans to screen patients for operations in China and Portugal. The operations are giving hope of regaining functional skills and movement to people with paralyzing spinal cord injuries -- which number up to 400,000 in the United States, according to the National Spinal Cord Injury Association.

About 100 patients already have called the Rehabilitation Institute and await screening for the procedures, Hinderer said.

Earlier plans had called for opening the center at the institute's Novi facility, but the DMC's new chief executive officer, Michael Duggan, insisted that the highly visible project be offered at the institute's headquarters.

The center will offer devices that send electrical signals into muscles, helping them move, and harnesses to hoist patients over treadmills so therapists can help them walk a step at a time.

The center will be funded with $1 million in gifts from three families of spinal cord patients. The donations include $450,000 from the Paul E. Gau Foundation; $350,000 from the Keith Shereda Foundation, and $200,000 from the Mike Wallace Research Fund.

Hinderer expects he will work almost exclusively evaluating people interested in operations in China and Portugal and following up on their care.

Hinderer is overseeing physical therapy for two metro Detroiters, Erica Nader, 26, of Farmington Hills and Bob Smith, 46, of Harrison Township, who were among the first Americans to undergo the new procedures.

"Their progress way exceeds my expectations," Hinderer said.

Both procedures are new and promising, but are not yet studied well enough to understand the benefits and risks of the operations. Fewer than 400 people have undergone the operations in the past three years.

Borrowing cells for new growth
The China and Portugal approaches vary in procedure and the type of patients eligible for them. But both use cells or tissue obtained from the olfactory bulb, above the ridge of the nose, that is capable of regenerating other cells.

These olfactory ensheathing glia (OEG) cells also release chemicals that help coat, or myelinate, connections between nerve cells. And they are attracted to growing nerve cells.

Studies have shown improved walking, weight-bearing activities and sensation in animals after OEG cells were placed into incisions made in their spinal cords.

Dr. Hongyun Huang, a neurosurgeon at Beijing's Chaoyang Hospital, has performed nearly 400 operations in the past three years using OEG cells from aborted fetuses on patients up to 30 years after an injury.

Huang injects 10 million of the cells just above and below a person's main spinal cord injury site. Anyone is eligible six months after sustaining a spinal cord injury.

Smith was Huang's first U.S. patient.

Smith paid $20,000 for the operation, including housing and travel. It was not covered by insurance, though Smith's Health Alliance Plan pays for his physical therapy.

With tissue, age is a factor
Dr. Carlos Lima, a neuropathologist at Egaz-Moniz Hospital in Lisbon, Portugal, has performed about 20 procedures in the past year -- including Nader's. The procedure uses a patient's own OEG mucosa -- the mucous membrane that lines the olfactory bulb.

After separating the tissue from other respiratory cells, Lima makes an incision at the injury site, clears scar remnants or fluid that often fills the area and packs it with 20 to 30 pieces of OEG-rich tissue before closing the incision.

The Portugese procedure is intended for younger patients, ages 18-40, preferably no more than three years after an injury. It costs about $50,000 and is not covered by insurance.

Hinderer said a patient's age may be a factor in recovery after the Portugese operation because the cell count in olfactory mucosa decreases with age. "By age 50, you have half what you once had," Hinderer said.

So far, none of the patients in China or Portugal has gotten worse as a result of surgery, Hinderer said. He also expects greater gains by U.S. patients who have the benefit of new rehabilitation therapies.

"This is such new ground," he said. The American patients, like Smith and Nader, "are the pioneers."

In a widely read Web site among the spinal cord community, Dr. Wise Young, director of the Rutgers University W.M. Keck Center for Collaborative Neuroscience, said many questions remain about the surgeries, including: When is the best time to plant the cells after an injury? How many cells should be transplanted? Which source of OEG cells are best? He tells Web visitors he expects better answers in the next few years. Thousands wait.

Hinderer said he hopes to provide patients with better answers and information on outcomes in the interim.

The center expects to begin another study in June with ProNeuron Biotechnologies to investigate the use of a white blood cell component administered within five to 14 days after injury. The Rehabilitation Institute will be one of five U.S. sites for the study.
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Monday, April 05, 2004

RALLY TO CURE SPINAL CORD INJURIES SET FOR NYC

On June 6th, 2004 hundreds of people on a mission will converge upon the World Financial Center Winter Garden in downtown Manhattan. They are coming from many different places and from all walks of life. Only, many of these people cannot walk because they have been paralyzed with spinal cord injuries.

They are coming to "Rally for the Cure," an event to raise money for spinal cord research. Christopher Reeve is scheduled to attend as their honored "Hero of Hope," joined by other celebrities who believe that although fate may have temporarily restrained those with spinal cord injuries, science holds the key that will set them free.

Rally for the Cure is a grassroots event organized by those with injuries, their family members, friends and supporters. Their first group fundraiser was held in 1998 at the same location and raised 1.7 million dollars in a single evening, setting a new record. Today, they have more members and a website (www.rallyforthecure.org), where people can get detailed information about the event.

The money raised will go to The Spinal Cord Injury Project at Rutgers University. This world-class research center, headed by Dr. Wise Young, is focused on finding practical breakthroughs, and expediting progress through collaboration with other research centers. It is estimated that there are over 1,000,000 people in the world with spinal cord injuries, 250,000 of them in the U.S., with over 11,000 new cases each year.

It is especially meaningful that this year?s fundraiser is returning to the Winter Garden, which was almost destroyed in the September 11th attacks on the World Trade Center. The Winter Garden withstood a terrible tragedy, was repaired with care and passionate commitment, and now stands again in its original splendor. Those coming on June 6th believe that the same fate awaits people in wheelchairs.

EVENT DETAILS

Date:Sunday June 6, 2004, 5:30 to 9:30 pm (scientific update from 1 to 4 pm - attendance is optional. Please see website for details)

Place:the Winter Garden, 220 Vesey Street, NYC

Tickets and event details available at www.rallyforthecure.org, or by calling 732-445-6573.
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