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Thread: LIVING HIS LIFE'S WORK

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    Senior Member Jeremy's Avatar
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    LIVING HIS LIFE'S WORK

    Posted on Sun, Nov. 03, 2002

    LIVING HIS LIFE'S WORK
    Researcher studies paralysis from a wheelchair
    By Barbara Isaacs
    HERALD-LEADER STAFF WRITER

    In his University of Kentucky laboratory, Alexander "Sasha" Rabchevsky coaxes secrets from nearly indestructible white rats -- animals that recover after a surgical spinal blow that would disable humans indefinitely.

    Unraveling the white rat mystery is a priority for Rabchevsky, 36, one of the world's few paraplegic spinal cord researchers.

    At 19, a motorcycle accident paralyzed him from the chest down, plunging him into a world of wheelchairs and physical boundaries, setting his life's work in motion.

    "If I've got a problem, I want to solve it myself," he said.

    That's at least part of the reason for his recent leap from researcher to 175-pound human lab rat.

    In January, he became the 13th human tester of an electrical implant system designed to help paralyzed people stand -- and even walk.

    The idea is as fantastic as being reborn a bionic TV superhero of the 1970s.

    "My hero growing up was Steve Austin, The Six Million Dollar Man," he said. "I'm a first-generation cyborg."

    Hopes and limits

    It is the question he has answered thousands of times since 1985.

    The question he refused to let become the focus of his life, or the measure of his success.

    "People have always asked, 'Are you ever going to walk again?'" Rabchevsky said. "I never give up hope, but I don't hold my breath."

    Even pursuing the implants meant stepping out on faith. As a researcher, he's a logical and critical thinker: Nothing is true until the proof is in.

    That's doubly important for a survivor of spinal cord injury, in which there's a delicate balance between realistic hopes and the limits of what a body can do.

    The implants were tantalizing, because if all went well, they would give Rabchevsky at least one thing he yearned for.

    That goal, simple enough to most, required the latest in cutting-edge technology -- and old-fashioned guts.

    In a 12-hour procedure in Cleveland on Jan. 17, surgeons placed eight electrodes deep in the muscles of Rabchevsky's lower back, buttocks and upper legs. A UK surgeon and colleague, Dr. Deborah Blades, implanted several of the electrodes. The 13 surgical cuts included a seven-inch slice in his abdomen, for the system's transmitter.

    The system, called the Functional Electrical Stimulation System for Standing, Exercise and Transfers, is available only through a research study coordinated by the Cleveland FES Center.

    The procedure is a true cliffhanger. Months of recovery are required before the first chance to stand.

    "It was the longest three months of my life," Rabchevsky said. "There was a period, a week or so, where I wondered if I should have done the whole thing." He was bandaged for two weeks and wasn't even allowed to bend over to put on a sock for a month.

    The total incapacitation reminded him of the darkest era of his life, the early weeks after his 1985 accident.

    "It was a hard thing to swallow," he said. "I tried to look at this as I had back in rehab -- that time is on my side. And that time heals all wounds, literally."

    Getting back to normal

    On Aug. 11, 1985, nothing was a given, not even survival.

    Rabchevsky, a junior at Virginia's Hampden-Sydney College, was a week away from starting football camp. A 5-foot-11, 180-pound strong safety, he hoped to make the starting lineup.

    He was the passenger on a motorcycle; it was only about the sixth time he had ever ridden one.

    He has no memory of the accident, just of saying goodbye to his sister and friends at a West Virginia Russian-American Boy Scout camp he was visiting. A mechanical failure caused the motorcycle to plunge down a ravine.

    Rescue crews lost his pulse several times on the way to the hospital. He was in a coma for two weeks.

    Fractures of the fifth and sixth thoracic vertebrae paralyzed him from the mid-chest down. Other injuries included a broken arm, four broken ribs and a punctured lung.

    At first, he thought he couldn't move because he was strapped down. But soon a doctor filled him in, giving him "the old statistics spiel."

    "It was the first time I really had to swallow that," Rabchevsky said. "What was happening and the permanency of it all."

    The next four months of inpatient rehabilitation was hell.

    "Initially, I wanted to take my life," he said. "In rehab, all you heard was bitching and complaining. I didn't want to become a cynic."

    One lifeline was the music of Bob Marley, the reggae singer and lyricist. A Marley quote became his mantra: "Every man thinks his burden is the heaviest."

    The people around Rabchevsky wanted to help.

    "The first time he went to the beach after the accident, it just hits you in the face," said Karen Whitesell, 42, his first physical therapist. "There's that ocean and you just can't run and jump in."

    Rabchevsky's father and uncle carried him into the surf instead.

    Rabchevsky, like his father, had always been muscular and strong. Dealing with a new reality was an adjustment for both men.

    "He's my miracle boy," said George Rabchevsky, his father. "A lot of people give up. And he didn't give up."

    A year after the accident, Rabchevsky began to drive again; his 1980 Grand Prix was fitted with hand controls.

    He resumed fishing, swimming, dancing, travel, concerts.

    "He's like, 'Let's go down to the floor!'" said Frank Carr, a former football teammate who remembers a Jermaine Jackson concert they attended the summer after the accident. "It was 100-some flights of stairs. It made us do stuff we would've never done."

    "He went skiing," George Rabchev-sky said. His son, an avid skier, tried "sit skiing" while still in post-accident braces. "He's a crazy guy."

    Strengthening education

    That first year, Rabchevsky walked again with crutches, using long-limb braces to support his legs -- something he did until about 1993.

    "A lot can't attempt that," Whitesell said. "It takes a lot of energy and determination." He also used an earlier version of electrical stimulation, with electrodes on the skin, to help him pedal a bicycling machine.

    "I was trying to reach normal," Rabchevsky said. "Put me up to a challenge, I'll take it."

    During the first year after the accident, Rabchevsky also continued his pre-med college coursework by correspondence classes in microbiology and invertebrate zoology. He also read voraciously about spinal cord injury.

    He returned to college, and in 1987 he graduated only one semester behind his class.

    By June 1995, Rabchevsky earned his neuroscience doctorate from the University of Florida.

    His father, a retired government geologist who holds a geology doctorate, is proud that his son could not be stopped by his injury.

    He told him: "'You know, son, there are a lot of easier ways to get a Ph.D,'" Rabchevsky said.

    "Every time I lie down to sleep, I think that otherwise, I would have never met my wife," he said. "I never would have been a neuroscientist -- no way."

    "I didn't want the wheelchair to be an excuse for any of my failures," he said. "I always had the wherewithal. But somebody upstairs kicked me and said, 'Use it.'"

    First movement

    On April 19, at 11 a.m., the suspense was almost palpable.

    Rabchevsky's wife, his physical therapist and his UK surgeon, Blades, were among the small group who gathered at UK's Center for Biomedical Engineering.

    Rabchevsky's inner pessimist was also along for the ride.

    "With all the work I had undertaken, there could be some glitch, one electrode didn't take," he said. "Then it would be 'Houston, we have a problem.'"

    That thought haunted him more than dying during surgery -- the idea that it wouldn't work, requiring more surgery and more lengthy recuperation.

    Wearing a white University of Kentucky tank shirt and black bicycle shorts, he parks his wheelchair between metal parallel bars, and the belt pack around his waist blinks to life.

    He leans forward in his chair and his feet hit the floor.

    "My legs just kicked in," he said. "And I was up."

    Within a few seconds, Rabchevsky is rock steady -- and grinning from ear to ear.

    "It was just euphoric," he said. "Everything and anything I had expected was fulfilled."

    Nancy Quick, his physical therapist, stood with her arms around him, to support him if needed.

    He stood for 45 seconds several times that day.

    "The first time, of course, I cried," said Gisele Rabchevsky, his wife. "When you've always seen someone sitting or lying down, it's just really nice to hold him upright."

    He remembers hugging his wife, but more than that, the eye contact.

    "The goal was to stand up and look at her eye to eye," Rabchevsky said.

    Not walking, yet

    It was a sweet victory.

    But the electrode system is not without its hassles. Hooking up the system consumes more than 10 minutes.

    A wide belt around the waist sends the signal. Low-level electricity -- similar to a flashlight battery -- stimulates the back and leg muscles into support.

    Rabchevsky compares the sensation to a strong bear hug around his waist. "A secure feeling, to say the least," he said. For a person without spinal-cord injury, it feels like pins and needles or like a foot falling asleep.

    His muscles contract and stiffen. Sometimes, his right leg will suddenly extend straight out from his wheelchair -- a surreal sight.

    Typically, he stands gripping a metal walker.

    By August, after four months back on his feet, milestones were still frequent.

    "This is the first time I've done this with long pants," Rabchevsky said. "Usually, I wear shorts, so I can see if they're going to buckle," he said of his legs.

    He moves with a shuffle down the hall. He jokingly compares his walk to that of the elderly father of cartoon character Homer Simpson.

    This first version of the implanted FES system isn't designed for walking. It doesn't lift feet or bend knees -- that comes from Rabchevsky.

    "They say I have a John Wayne swagger," he said, smiling.

    It is technically a swinging gait -- he bends his weight forward on his metal walker, causing his legs to swing and kick forward. "Basically, it's physics," he said.

    Normally, Rabchevsky stands and walks for less than two minutes at a time, several times a week.

    No one knows how far he will be able to go.

    But he is excited about the potential. On Monday, he gave the keynote address at an international conference in Florida, using the system to get out of his wheelchair, walk 20 feet across the stage and back -- the first time he had gone any real distance without someone by his side to spot him.

    "For me, it's a huge leap of progress," he said.

    "Wild, isn't it?" he said after one recent walk. "It doesn't seem like much. But to be able to do something like that ..." he trails off.

    "You've got to stand before you can walk."

    Research continues

    The first version of the implant system helps only with standing and transferring, such as from wheelchair to car, or chair to bed.

    Its creators are planning future systems with the capability of more advanced leg movement. But that's probably years down the road. Researchers plan to test it in at least a dozen more people, said Ronald Triolo, who is leading the project.

    Although Rabchevsky's group of 13 is the first to use implanted electrical systems for standing, more than 1,200 people worldwide have used electrical systems to control bladder function or for arm movement, Triolo said.

    Such systems could have a wide impact. There are some 250,000 people with spinal cord injury in the United States, more than 2,800 of them in Kentucky.

    But the system isn't cheap. The internal and external components cost about $31,000. The cost of surgery, hospitalization or rehabilitation is additional. The study participants get all of it at no charge.

    But they fully bear the emotional price -- dealing with long-shelved hopes and new expectations.

    "Some would argue 'Gee, all they are doing is having them stand up,'" Rabchevsky said. "Even my father. The first time he saw me, quote-unquote, 'walk,' I think he expected me to walk. A lot of people may have high expectations, and be disappointed at how much work goes into being able to stand and walk."

    He isn't at all disappointed. "I don't give a crap," he said. "I did it for me, not for them."

    But he is still surprised by responses to it -- even from his grandmother.

    "I stood for her, and she had a very worried look on her face," Rabchevsky said. "In Russian, she said: 'It doesn't seem right.'"

    Firsthand knowledge

    Navigating life with a spinal cord injury inspired Rabchevsky's research.

    He has already made a name for himself, even though he is still a young researcher.

    "He's a pain in the butt," said George Smith, a close friend and researcher with UK's Spinal Cord and Brain Injury Research Center. "He knows what it's like being in the chair, and he's very aggressive in his questioning of other investigators. It doesn't make any difference who the person is."

    "It sounds a whole lot different, coming from someone in a wheelchair," Rabchevsky said. "If I don't understand something, damn right I'm the first to the microphone."

    He has two research grants, with more pending. Rabchevsky first arrived at UK in 1997 as a postdoctoral fellow and is now an assistant professor.

    Rabchevsky's work focuses on finding medications or growth factor -- a type of protein -- to aid recovery after spinal cord injury.

    "With rats, there's something in their system we'd like to tap into," he said.

    Rabchevsky's experience also prompted him to research a rarely studied byproduct of spinal cord injury -- a life-threatening condition called autonomic dysreflexia.

    Spinal cord injury often disrupts common reflexes. Everyday stimuli -- even an ingrown toenail -- can cause an exaggerated reflex response, including convulsions or cardiac arrest. Some in the field think that Derrick Thomas, an NFL linebacker paralyzed in a 2000 car accident, died of cardiac arrest because of the condition a few weeks after his injury.

    The condition interferes in smaller ways, too. Rabchevsky sometimes loses bladder control.

    In fact, walking isn't anywhere near the top of his personal list of functions he'd most like to have full control of. He'd choose bowels and bladder.

    But Smith and Rabchevsky say that most researchers can't resist the idea of walking as a cornerstone of functions.

    At a recent conference, Rabchevsky was fascinated by a survey from quadriplegic researcher Kim Anderson, who polled more than 100 paralyzed people. Like Rabchevsky, 65 percent of the paraplegics she surveyed wanted bladder and bowel function above anything else.

    "It's a very stressful thing to pretend nothing has happened," Rabchevsky said about losing control. "You want to go away in a corner. But you have to hold your head up high."

    He files that under one of his pet expressions -- DWI, or "deal with it."

    Gisele Rabchevsky wasn't familiar with such concerns before she began dating Rabchevsky 10 years ago.

    "My eyes were opened up to a whole new world," she said. "It was a real reality check the first time Sasha got to my porch steps. It was an hour to get him up. I was not used to how to grab and lift him. Once he got inside, he couldn't get in the bathrooms."

    At the time, it was a revelation to consider the implications of mundane things like cupboards -- and whether Rabchevsky could reach them.

    "It's everything and nothing," said Gisele, a graphic artist and Web designer for the UK Center for Applied Energy Research. "It's all so normal now."

    "I could complain until the cows come home," Rabchevsky said. "But that won't change a thing. But I understand the frustration of very common things that people do that are taken for granted."


    --------------------------------------------------------------------------------

    Cleveland FES Center

    Sasha Rabchevsky is the second Kentucky man to get a functional electrical stimulation system in Cleveland through a study coordinated by the Cleveland FES Center. The first Kentuckian to get the system is Rod Bobblitt of Anderson County, who got his in February 2001.

    "I'm just a dreamer who dreams of better days"

  2. #2
    Senior Member mk99's Avatar
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    Great post Jeremy!

    I find it quite interesting that a researcher would choose to go with a very invasive surgery like FES implantation and not hold out a bit longer for an actual biological solution.

    We definitely need more SCI victims to become researcher's & clinicians themselves. Go Sasha!

  3. #3
    Echo, great post Jeremy.

    I know who my first phone call's gonna be tomorrow - UK. "May I please speak to Sasha..."

    Mike, anyone, is this something you would consider?

    Wise, any thoughts / comments on the implanted FES system?

    Onward and Upward!

  4. #4
    Senior Member mk99's Avatar
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    I've thought about this and did some research on the Cleveland Centre. At this time I would have to say.... no.

    I don't have any problems with having some kind of FES technology implanted... if I could walk a bit like a robot I'd do it today. It just seems like an extremely invasive procedure and I'd rather wait a little bit longer for a better biological solution.

    If a biological solution allows SOME function and then a more advanced FES system would build on that function to allow walking then sign me up. Until then... not for me.

    Anyone else consider doing this now?

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    Senior Member Max's Avatar
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    Somehow Jeremy cut his post short...

    Here is ending of article:

    <The Cleveland FES Center is a consortium of research groups including the
    Cleveland VA Medical Center, Case Western Reserve University, MetroHealth
    Medical Center and Edison BioTechnology Center. The University of Kentucky's
    Spinal Cord and Brain Injury Research Center also plans to offer the implant
    surgery.

    To find out more about the Cleveland study, go to http://feswww.cwru.edu/.
    The site gives information about its research studies and about how its
    human research subjects are selected. Or call the information center at
    1-800-666-2353.


    ----------------------------------------------------------------------------
    ----
    Herald-Leader news researcher Linda Niemi contributed to this report.>
    http://www.kentucky.com/mld/heraldleader/4433295.htm

    [This message was edited by Max on Nov 03, 2002 at 09:37 PM.]

  6. #6
    I met Sascha at the NINTS symposium. He's the best, a lot of energy, great personality amd very knowlegeable. I gave him CareCure's address, he didn't know about this site but said he was interested in participating once his conference schedule slows down a bit.

  7. #7

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