Rob Summers: From Quad to Para and Beyond?

Rob SummersIt almost looks easy — just apply 10 volts of electric current to the spinal cord and — voila! — a paralyzed man stands.

Actually, the process of enabling a person with complete motor paralysis to stand voluntarily with the help of electrical stimulation may have begun more than four decades ago. In 1966 a Los Angeles Times story reported on an experimental “bioelectric” procedure that enabled a paraplegic to stand and predicted that with the help of implanted electrodes and the advent of microminiaturized computers, paraplegics might one day be able to stand and walk.

More than 40 years later, Rob Summers, a C7-T1 quad/para from Beaverton, Ore., stood unaided during a far more sophisticated clinical trial testing epidural stimulation (electrodes attached directly to the dura of the intact spinal cord below the injury site). Summers, who had seen his dream of becoming a major league baseball player evaporate following a spinal cord injury that left him completely paralyzed below the chest, now hopes to stand again on a pitcher’s mound. “I have a longterm mindset,” he says. “I don’t know how long it will take me, but I do know I will be walking.”

To those of earlier generations, Summers’ dream seems far off still. We have seen countless such predictions come and go. Every five years or so, the latest version of the paralytic-may-one-day-walk-again story splashes across the media spectrum. But if anyone has a chance to turn dream to reality, it just might be Rob Summers.

One Dream Ends, Another Begins
Summers’ boyhood baseball dream was in full swing from ages 9 to 14, when he spent one or two weeks each summer at Doyle Baseball Academy in Florida. Impressive numbers of Doyle graduates have gone on to play in the majors. And no fewer than five of Summers’ baseball buddies from Oregon have made their way to the big time.

Summers made promising progress in his pursuit of the classic American boyhood dream, from building a Wiffle ball stadium early on with Darwin Barney, his neighbor, who now plays second base for the Chicago Cubs, to being named to Oregon’s all-state high school team as a pitcher in his senior year. Summers went on to play with the Oregon State Beavers as a freshman, the first year the Beavers made it to the College World Series. “My life was baseball,” he says. A year later, on July 10, arriving home late at night, Summers was struck by a hit-and-run driver.

Not long after, he was being fitted for a wheelchair at the Rehab Institute of Oregon in Portland and trying to form a fist with his weak quad hands. Just five weeks post-injury, he left RIO. “It was too depressing for me to be there,” he says. His mother had found a private exercise-based rehab facility nearby, called Project Walk (now called Adaptive Training). “She thought it would fit my personality and style.” Perhaps it was the philosophy — similar to the baseball academy — that attracted them: You have to work hard to get results.

But this was a more complex game involving the least understand organ in the human body. With a complete spinal cord injury, hard work alone has never been enough. The odds of “overcoming” complete paralysis are next to nothing. Millions of hardworking young men and women with SCI have given rehab 110 percent, even persisting for years, only to find that functional recovery is unattainable.

A miniscule percentage do ambulate in some form again, but nearly all “overcoming paralysis” success stories can be explained by anatomically incomplete paralysis — enough spared nerve connections to make some kind of progress possible. Dr. John McDonald, head of the Kennedy Krieger Institute and former rehab doctor for Christopher Reeve, believes that the terms “complete” and “incomplete” are confusing. “More than 70 percent of people with SCI have 30 percent of their [neurological] connections left.”

McDonald is not making a wild stab at an unknowable number. He has studied countless MRIs and is currently working with an advanced MRI that shows much finer imaging detail. Yet the mystery remains: Why do so few of those with SCI — complete or incomplete — regain functional use? “Recovery” — in the world of SCI — has become synonymous with qualifiers like “partial,” “disappointing,” and “impractical.”

Still, Summers, like others whose injuries are relatively young (less than 10 years post-injury) stubbornly clings to the hope that he may be the exception. And at this point, after consenting to an implantation of an epidural stimulator that wasn’t even designed for the experiment — and standing on just the third try after the device was switched on — Summers’ hope does not seem all that unreasonable.

From Rehab to Project Walk to EpiStim
When Summers left RIO five weeks post-injury, he was wearing a neck brace and hand braces. Three days later he showed up at Project Walk, ready to work. “I could point with my right finger,” he says, “and move it pretty well on command.” He could also bend his fingers in the direction of his palm and try to make a fist. At RIO he used rubber bands and Thera-putty to strengthen what muscles he had. At Project Walk he concentrated on developing arm and hand strength. “After six months I could do pull-ups, some pushups, and dips on parallel bars.”

But he was still paralyzed completely from the chest down.

His parents footed the private rehab bill while battling Blue Cross for coverage. Summers took it upon himself to advocate aggressively at the Blue Cross building in downtown Portland. “I’d go there on my lunch break and hang around, wearing my OSU Champs T-shirt to try to shame them into approving our appeal. I wheeled around telling them, ‘I can’t believe you guys aren’t paying for this,’ and just made them feel uncomfortable.” He was like a pesky little dog snapping at everyone’s heels. More importantly, he learned from his caseworker and others the unwritten rules of how to get an appeal approved.

“I learned there were three levels of appeals but nothing written about level three in their handbook. If you persist and refuse to go away, sooner or later the appeal will either end up in court or they’ll have to cover it to avoid looking bad.”

Blue Cross finally gave in and paid retroactively for the first six months and the duration of his private rehab, a year in all. But his progress plateaued after a year at PW — no further gains for the next six months. “Then my mom and dad and I began scouring the world to see what else was available.”

In August 2007 Summers wound up at a rehab facility at TIRR in Houston, part of the Reeve Foundation’s NeuroRecovery Network, but he didn’t qualify for their program. On his second trip there, he struck up a conversation with someone dressed in gym clothes. He didn’t know it at the time, but he was talking to Susan Harkema, head of the NeuroRecovery Network. Harkema told Summers to check out the Reeve research center in Louisville, Ky., where she was based.

The next week Summers showed up in Louisville and began lobbying to get into a research project. He moved to Louisville in early September and began working with Harkema. During that time he was exposed to locomotor training for the first time and worked on conditioning. “I did daily doubles for six months,” he says. His drive, attitude and athleticism eventually convinced the research team that he was their man.

The FDA postponed the epidural stimulation trial. Then, in March 2009, it began. Prior to being implanted with the stimulator and as part of the clinical trial, Summers did 80 pre-sessions with locomotor training. On Dec. 7 the stimulator was implanted. After two-and-a-half weeks of bed rest, the stimulator was turned on. On the third day, when he stood up voluntarily for the first time in more than three years, everyone was amazed.

Summers worked with Harkema for several months and gradually regained the ability not only to stand and bear weight, but to move his toes, ankles, knees and hips, all voluntarily — while lying on his back with the stimulator turned on. What happens with the stimulator turned off? At this point, nothing. The progress is only visible when the juice is on.

Speaking at the news conference that announced the results of the trial in 2011, Reggie Edgerton, the SCI researcher from UCLA who designed the trial, described it this way: “I was almost afraid to believe what I was seeing.” Strangely, no one from the press asked why it was so surprising.

“I thought,” Edgerton told New Mobility two weeks later, “how are we going to explain this, it was so dramatic. We can’t — we don’t know the mechanisms yet. But there are important implications.”

Important implications? Yes, indeed, and not just for those with SCI. Edgerton says that others with similar neurological disabilities, like Parkinson’s, stroke, transverse myelitis and multiple sclerosis, could benefit as well. He thinks it is likely that subjects from these disability groups will participate in epidural stimulation trials in the future.

As for SCI, for those who do not regain the ability to stand and walk, many may be able to recover other critical functions, such as muscle movement below their injury, temperature control, and bladder, bowel and sexual function — all of which Rob Summers has recovered since turning on his implanted stimulator on Pearl Harbor Day, 2009.

A Typical Day in EpiStim Land
With the official trial over, on a typical day in his apartment, Summers gets up at 4 a.m. and does his job — trading in futures and commodities — until about 10 or 12. After lunch he stands with the ES turned on, then takes a break. After that, he does his voluntary movement routine lying on his back for another 60 to 90 minutes — once again with the stimulator on.

While standing, he is safely contained within a custom standing station with parallel bars on either side and one bar in front. He rolls up in his chair, turns on his stimulator with a remote control device that has been modified to allow voltage control, and stands. His mission is to use less and less voltage to stand, and perhaps one day, stand on his own. When he first stood, he was using 10 volts. Now he says he is down to about 6.5 to 8.0 volts average, and is able to stand with 5.5 volts “on a good day.” Edgerton says that Summers can now move specific muscles while lying down with as little as 2 to 3 volts.

Videos that show Summers standing draw attention to twitchy muscles in his legs. This is what happens when his legs begin to fatigue. At first when he stands, the twitching is much less noticeable. It’s better now than when the videos were shot, but his muscles still get a little fatigued. At first his body could not sustain a long drawn-out muscle contraction (he was able to stand for about four minutes). “The more I do it, the smoother it becomes.” Now he routinely stands for an hour every day with the stimulator turned on.

When he’s standing upright he works on weight shifting, controlling his balance, trying not to use his hands. He rocks from side to side and front to back and has sensation in the soles of his feet. “I had a little sensation before the implant. Now I can feel light touch throughout my body. It feels just like it feels in my arms and hands, completely normal.”

For the first six to 12 months post-injury, he had no sensation. But he does remember seeing one toe move during this time. While he was working out at Project Walk, he began to regain sensation in his chest, then his butt, then his feet. He remembers when he saw his toe move, he had no control over it, but “there was a glimmer of hope there.” With his chest, at first there was dull sensation, then light.

He has had one pressure sore, just a red spot on an ankle (malleolus). “It only took a couple weeks for it to go away.” During that first year he doesn’t remember feeling any pain anywhere. But just prior to a June 2011 trip to Mexico with his girlfriend Rachael, he got an injection in his butt and felt it. “I just about jumped off the table. It felt just like a shoulder stick felt before I was paralyzed.” He also remembers “rolling an ankle when I was standing and it hurt bad,” like it used to when playing basketball in high school.

The return of motor control in any specific area has always been preceded by the return of sensation.

Happily Ever After?
Besides having regained significant sensory and motor function — with the stimulator turned on — Summers’ personal life is unfolding almost like a modern fairy tale. As he was being interviewed on the phone, he was sitting in his wheelchair in Santa Monica enjoying a coffee and looking out on the beach, watching the palm trees swaying. Rachael was doing a photo shoot. “We are trying to put together a feature film,” he says. The plan switched from documentary to commercial movie when agents approached them with the idea.

He and Rachael, an aspiring actress and former UCLA film student, live in Hollywood. “We’re right in the thick of it,” he says, living in a brand new apartment built to earthquake code. “My dad insisted on it.” The couple met the night before his implant surgery, so she has been with him throughout his amazing ride. Summers says they want to get married and start a family.

Since his injury at the age of 20, Summers’ whole life has been consumed with physical therapy and trying to overcome paralysis in the same way his prior life was devoted to baseball. Who knows, maybe one day his dream of playing baseball may come full circle in the real world. If not in the bigs, then maybe in a slow pitch league for enjoyment. In other words, he could be substantially free from paralysis, walking around just like everyone else, with or without a stimulator. But that could be a long ways off. Right now, he says, “therapy is my life.” Not a bad life, considering. Not bad at all.

For more on the Reeve NeuroRecovery Network, visit www.christopherreeve.org.

For more on the epidural stimulation trial, read the published study in The Lancet: www.thelancet.com/journals/lancet/article/PIIS0140-6736%2811%2960547-3/fulltext.

To learn about how to participate in a Kennedy Krieger clinical trial involving MRI imaging of SCI, visit www.kennedykrieger.org.

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What’s So Exciting About Epidural Stimulation?
The results of the first clinical trial with humans using epidural stimulation “suggest that with a modest level of epidural stimulation the person with SCI can be converted from complete to partial paralysis,” says SCI researcher Reggie Edgerton. “It is a first.”

The results, he says, “change our understanding of the concept of ‘complete paralysis.’” Now it is determined by clinical tests rather than by the anatomy of the spinal cord. “It may be that the reason ES works is that there may be [spinal] nerve fibers that are spared that we don’t know about,” Edgerton says, “or there are existing fibers that we activated. To understand what happened, we need to do more animal experiments. We also need to know if ES used over months will bring about gradual recovery. It also may be that axons have grown around the lesion area.”

Whatever has happened Edgerton attributes to the “plasticity and redundancy” of the central nervous system. “I think [with Rob Summers] there has been significant reorganization of both brain and spinal cord. The brain has figured out new connections.”

Apparently what allows those newly configured connections to function in a practical way is the principle of “excitability” when electrical stimulation is applied directly to the spinal cord.

Think of a battery with an extremely low charge. When you turn on the ignition of your car and the motor fails to start, the battery seems dead. But when you connect jumper cables from another power source to the “dead” battery, suddenly it comes to life, and the car starts.

Just how important is excitability?

“It is essential,” Edgerton says. “The increase in excitability allows proprioceptive sensation coming from the legs to be used more effectively.” Edgerton prefers the “hearing aid” analogy because the spinal cord has intelligence and communicates with the rest of the body as well as the brain. “Let’s say a person cannot hear, or cannot hear well enough to make sense of what he’s hearing. But if you amplify the signals, suddenly the brain can make sense of what is heard. The increased excitability also makes the descending pathways more accessible.”

With the help of epidural stimulation, Edgerton says, “proprioceptive spinal neurons don’t have to totally bridge the gap (of the lesion) to make a connection.”

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The Remarkable Case of Patrick Rummerfield
Long before Rob Summers started regaining motor control following his cervical SCI, Patrick Rummerfield was astounding the experts with his activity-based recovery. “I’m probably one of the most studied quads out there,” he says.

Rummerfield, 57, sustained a C4-6 SCI in 1974 at the age of 21. For the next 25 years he devoted himself to rigorous exercise and therapy, even when no progress was visible. Over the years he gradually regained the ability to walk, and has even run in marathons. But like Rob Summers, his recovery may have begun with a twitchy toe. “I saw it but I couldn’t feel it,” he says. Less than two months post-injury, he had just come back from trying out his first sip-and-puff power chair when he noticed his left big toe was twitching.

This motivated him to go all out with his physical therapy program. At nine months post-injury, “they got me to a point where they could lift me up, and with [the therapists] helping, I’d take a few two-to-three-inch steps, and then I’d be exhausted.”

Over the next four years, he gradually got more return of motor function. “First in my left foot, then my right, and from my lower to my upper legs. I got to where I could walk about 100-150 feet without falling, then I’d have to rest.”

In 1991, 17 years post-injury, he would try to race his daughter home after working out at the YMCA. “I could only run about five or six steps without falling. One morning we took off and I managed to run one mile without stopping or falling down. He credits his steady, incremental progress to his routine of doing strenuous physical therapy two to three hours a day for decades.

For several years following his running breakthrough, Rummerfield made steady improvement, but from 2000 on, “it has only been maintenance,” he says. Over the last two years, he has noticed some slight regression, which he attributes to aging.

Having worked with and been studied by John McDonald since 1998, Rummerfield is now employed by Kennedy Krieger Institute. Medical experts are still astounded at Rummerfield’s recovery, especially since MRIs show that his spinal cord remains severely damaged.

For more on Patrick Rummerfield, read the following:
Washington Post article: www.tinyurl.com/patr-wapo.
AOL News article:
www.tinyurl.com/patr-aol.
Timeline of Rummerfield’s road to recovery:
www.spinalcordrecovery.org/stories/Patrick-Rummerfield.php.

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Dueling Stimulators?
Epidural stimulation is not the only game in town, according to Dr. John McDonald, founder and director of the Kennedy Krieger Institute’s International Center for Spinal Cord Injury. The guiding principle of the center’s activity-based therapy program has been to encourage hope for recovery, and a major component is functional electric stimulation. The program focuses mainly on youthful inpatients (up to 21 years of age), but outpatient programs serve a much broader age group.

FES differs from epidural stimulation because it bypasses the spinal cord and connects directly with peripheral nerves and muscles. Its main purpose is to maintain muscle tone and/or build muscle mass. ES, on the other hand, stimulates the intact spinal cord below the level of injury and is more focused on voluntary control of motor nerves and muscles.

Reggie Edgerton stresses the importance of locomotor training used in combination with ES. With locomotor training, also called harness walking, the subject is suspended in a stabilizing harness over a treadmill while therapists move the subject’s feet in a repetitive walking motion. At present, LT has been shown to work effectively with incomplete injuries, but has little to offer those with complete injuries.  Both Edgerton and McDonald recognize the importance of this system of patterning muscle memory for future recovery, but Edgerton sees ES as being more holistic. “Load bearing is most important for preparation. When you stand, you stand with your whole body, not just your legs.” Edgerton believes that Rob Summers’ success in standing with ES could only have happened the way it did (almost immediately) in combination with LT.

McDonald, who is best known for overseeing Christopher Reeve’s activity-based recovery program, which resulted in significant, measurable motor recovery in 2002 following several years of complete motor paralysis, sees a connection between Reeve and Summers’ progress. “But I don’t think it’s related to locomotor training,” he says. “Rob had hundreds of LT sessions [80 as part of the clinical trial] and Chris only had five, and Chris’ recovery started happening about four years after that. The real connection is the electrical stimulation. FES does the same as ES but in a more practical way.”
Reeve’s program was mostly performed in his home gym and consisted of surface electrical stimulation of upper limbs and riding an FES bike. On the other hand, referring to Summers, McDonald says, “How many people do you know who have the time and resources to get an operation and have LT sessions with sophisticated equipment in a clinical setting at least three times a week for two or three years?” He says an FES bike activates pattern generators in the same way as LT, but he believes that FES has an advantage: “The biggest benefit of FES is building muscle mass — the most important thing in enhancing overall health. With increased muscle mass you can avoid diabetes, cardio problems, and pressure sores,” he says.

While Summers is only one research subject and trials involving ES have just begun, he believes that ES is superior to FES. “I rode an FES bike for about a year,” he says. To enable pedaling, FES activates electrodes attached to glutes, quadriceps, hamstrings and calves. “I noticed much more improvement from the first six months of ES than I got from a year of FES,” he says. “Absolutely, I made more gains with epidural stimulation.”

Still, McDonald’s point that FES is more practical, meaning more widely available and — at least at this time — more affordable, cannot be discounted. In a world where expensive therapeutic equipment has yet to be covered by most private insurance companies and Congress is looking for ways to reduce Medicare and Medicaid costs, high-tech systems such as functional electrical stimulation and epidural stimulation are likely to remain beyond reach of most people with SCI and related disorders for years to come.

For more on the Kennedy Krieger Institute and the International Center for Spinal Cord Injury, visit www.spinalcordrecovery.org.


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