The Miami Project: Not Just About Cure

Steve Lindley, Miami Project Senior Research Associate, works with research participant Michael Rivera.

Steve Lindley, Miami Project Senior Research Associate, works with research participant Michael Rivera. Photo by Rob Camarena, The Miami Project.

A visitor entering the marble-floored lobby of the elegant seven-story building that now houses the Miami Project could easily mistake it for the entrance to a fine bank or a very upscale office building–until they glance at the gyms behind the glass walls on either side of the lobby. Therapists walk from one exercise machine to another, jotting down notes as paras and quads work out on state-of-the art-equipment. Across the lobby, in the other gym, a man suspended in a harness, legs wired with contacts, empty wheelchair nearby, walks on a treadmill aided by a weight assist machine and two therapists. It’s fitting that the Miami Project to Cure Paralysis has chosen to showcase its research gyms at the entrance to its building–a good way to reinforce that its focus isn’t just on cure alone. After all, the short term goal of the project is to improve quality of life.

While some in the disability community still debate whether resources are better devoted to “cure” or “care,” the people at the Miami Project believe that both approaches complement each other. Dr. Mark Nash, director of the project’s Applied Physiology Research Center, says, “The things we’re studying and bringing to the clinical environment will make it possible–once a cure is found–for people with SCI (spinal cord injury) to take advantage of that cure.”

Nash has been with the project since its inception. As one of the small group of researchers first gathered together by Dr. Barth Green in 1984, he has seen the organization grow into the largest and most comprehensive SCI research center in the world.

“The strategy of the Miami Project,” wrote Green in 1992, “was to gather a critical mass of scientists from all of basic laboratory and clinical disciplines related to neuroscience in one center, under one roof, with the committed goal of curing paralysis.”

The project was immediately accused of raising false hopes. After all, finding a way to reverse the effects of spinal cord injury was one of science’s most intractable problems. And early in the project, some on the team made overly optimistic predictions. Now no one at the project will offer any guess as to when they or anyone will find a cure for paralysis. What they do point to, justifiably so, are their accomplishments. “When we first started this,” Nash says, “no one was talking about SCI. Now everyone’s talking about it.” By any standards, the gains in research they’ve made, the experiments that are under way and the growth they’ve achieved–all in less than 20 years–is impressive.

Quality of Life
From the beginning, the University of Miami School of Medicine embraced the program, making it a part of its Department of Neurosurgery. Then, as now, all faculty at the program are affiliated with the university. Starting with only five scientists borrowed from other UM departments and a few volunteers, the Miami Project has grown into an operation that currently uses 27 principle investigators supported by more than 100 research associates, students and fellows. Over 300 scientists have been trained at the project and are now teaching, training others and conducting research at institutions all over the world.

The majority of their efforts supports basic scientific research needed to achieve the project’s long-term goal of finding a cure for paralysis. So far, among other things, Miami Project scientists have demonstrated that neurons can regenerate (using Schwann cells), found ways to isolate and grow Schwann cells, designed and tested approaches to stimulate spinal cord regeneration and developed genetically-engineered nerve cells.

But finding a cure is a painfully slow process made up of many small scientific steps–a good reason why a significant portion of the Miami Project’s resources also go toward fulfilling its short-term goal: improving quality of life. Currently there are over 40 clinical studies under way. “After all,” Nash says, “Its great to wait for a cure. But life has to be worth living while you wait.”

Just ask Drag Racing Hall of Fame inductee Darrell Gwynn how he feels about the Miami Project’s ongoing male fertility program. “My quality of life is just wonderful,” says Gwynn, a quad paralyzed when his drag racer crashed in 1991 and the proud father of Katie, a beautiful 5-year-old girl.

Not that it was easy. SCI not only affects ejaculation but also semen quality. Gwynn and his wife, Lisa, participated in the study for almost three years. “I was one of the tough ones,” Gwynn says. “It’s amazing that something that beautiful can come out of that type of experiment.”

So far, 54 healthy babies have been born thanks to the Miami Project. Of course not every fertility program participant is successful. But, for those paras and quads who ask if they can become fathers, the project’s Dr. Nancy Brackett says, “With some help, it’s very possible.”

Aging and Health
Maintaining good health during aging is one of Nash’s primary focuses. Hearing the list of effects of SCI on the body can be a depressing experience for any para or quad as Nash describes the accelerated aging the condition causes–along with the elevated indices of cardiac disease, higher cholesterol, osteoporosis, weight gain and increased risk of diabetes and the natural decline of shoulder joint function that come with it.

Fortunately, Nash’s research also shows that proper exercise can do much to help people with SCI keep healthy. “Primary prevention has to be the imperative for which there is no substitute,” he says. “Secondary prevention is an oxymoron.”

Studies he has run in the past have shown that exercise activity can improve muscle and heart function. But, where once he relied on hand cranks for much of that exercise, he now says–because of shoulder joint damage–”Wheelchairs and handcranks are the worst things to rely on for exercise.” Instead he’s turned to studying the use of weight training to reach his goals.

Using a multi-station Helm’s Equalizer, he’s developed a three-times-per-week circuit training program that combines bursts of brisk activity with various resistance maneuvers–all in about 43 minutes, all without resting. Asked why he didn’t choose to make the regimen longer, Nash says, “It isn’t about how much exercise you need. It’s about how little.”

David Wilson, an incomplete T6, left paralyzed in 1962 after he incurred the bends while diving on a shipwreck near Key Largo, participated in Nash’s study of the new exercise regime two years ago. “I liked the experience,” he says. “First you get your heartbeat up on the handcrank and then you go to the circuit and then back to the handcrank. I increased my strength, increased my cardiovascular fitness and the exercise wasn’t that boring.”

Because of a wheelchair-friendly gym near his home, Wilson has been able to keep up on his exercise. Nash, well aware that many quads and paras aren’t able to find gyms like this near their homes and that few can afford to buy thousands of dollars worth of machines like the Helms, asked some of his research assistants to figure out a less expensive way for people with SCI to exercise and still get the same health benefits.

They came back with a program that uses arm spinning–same motion as hitting a punching bag–for increasing the heart rate and elastic exercise bands to provide the same resistance exercises–all at an equipment cost of less than $150. And their testing showed that both systems provided equal benefits.

It’s that type of originality that’s been a hallmark of the Miami Project. Most neurosurgeons operating on new SCI patients now use some of the techniques and devices developed by Miami Project doctors. And most rehab centers have had their programs influenced by exercise advances that have come from project studies.

New Developments
One of the newest developments is a push-pull exercise machine just now being tested by the project’s Dr. Patrick Jacobs. If it proves to provide the same cardiovascular benefit without the resultant shoulder joint wear of the arm crank, it could be a boon to the wheelchair community.

David Wilson has returned to participate in that study. Why? “The Miami Project is wonderful,” he says. “It’s kind of like they’re using us to find a better way.”

Finding a better way is definitely one of Jacobs’ goals. Get him started and he’ll start to talk about future possibilities, like an eight-channel programmable exosystem that might one day help people with SCI to walk–or technology that might one day be implanted. But Jacob is most interested in the here and now, testing devices and techniques to aid those with SCI. He’s a big believer in making sure that manufacturer’s claims are scientifically corroborated. “Once something comes down the pike, you see all too many people get suckered into it,” he says.

Past studies contributed to the Parastep1 assisted walking system being the first of its kind to receive FDA approval. The system, which is worn and used without braces, enables its users to stand or walk for small distances with the aid of a microcomputer and electrical stimulation of the muscles.

Walking studies have always played a part in the project’s research. Previous programs have shown physical and psychological benefits while current studies are delving into whether walking can be improved for those who show some voluntary movement in their legs (some practical motor control is essential–which excludes those with complete spinal cord injuries).

Another interest is what effect such vigorous exercise will have on the human body’s central pattern generator–a group of nerve cells that synchronize stepping. While scientists have known for years that such groupings exist in lower animals, Miami Project scientists have just recently reported the first clear demonstration of it in man.

Michael Rivera, an incomplete C5-6 quad injured three years ago, has traveled from New York to participate in one of Jacobs’ walking studies. Though he mostly gets around in a power chair, he’s able to stand and walk a small distance with a walker. He’s participating in a 12-week study, working out on the project’s overground walking system, a device that utilizes a weight assist machine–lightening his weight by 30 percent–with an overhead track and functional neurological stimulation.

What does he think of it? “I love it! I’m doing things that I haven’t been able to do before.” What things? “Before I couldn’t get straight up from my chair. Now I can.”

T.J. Bolduc, an incomplete C6 quad and partial walker injured in a diving accident five years ago, is nowhere as enthusiastic. He’s just wrapped up a treadmill study using the weight assist machine and some manual assistance on his left leg. “They’re showing significant gains in speed and muscular activity but it doesn’t feel like it. They’re more pleased than I am,” he says. Still he adds, “I wish there was something like that near where I live.”

The Lokomat is another walking device under review at the project. Made in Germany, there are only four in the United States. Designed to help people relearn how to walk, the system looks and functions like a pair of robotic braces. If it lives up to the manufacturer’s claims, it should provide therapists with a way to guide patients’ stepping action in a more consistent manner, with less effort and risk of injury.

Other Programs
Fertility and exercise programs are only part of the project’s clinical focus. A study into the sexuality of females with SCI, using Viagra among other techniques, found that over 50 percent of the program participants were capable of orgasm. An ongoing study into the chronic pain that affects many with SCI has established that it may be due to a chemical imbalance in the spinal cord. Efforts are under way to develop a biogenetic solution to the problem. Also, a cholesterol medication study and an examination into the possible physical benefits of power assist wheels are in their early stages.

Some of these studies may help with finding a final cure and some may not. What is sure is that when the cure is found–whether at the Miami Project or elsewhere–the research and training done at the Miami Project will have played a major part in its discovery. In the meantime study participants like Gwynn and Rivera have had their lives affected in a smaller but still profound way.

Program participant Wilson puts it this way: “People think that finding a cure is being able to get out of a chair and tap dance,” he says. “But if a person goes from not being able to use his arms at all to using them some–well then, for that person, that’s finding a cure.”

Alan Troop has participated in two Miami Project studies in the past and will soon be participating in two more. He is also the author of the dark fantasy novels, The Dragon DelaSangre and Dragon Moon, published by Roc Books.

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