Photos by Matt Wong

After 25 years as a T9-10 para, Joanne Petersen worried that her doctor’s prognosis in 2009 had written her future. At 49, her shoulders were giving out, she could no longer raise her arms above her head, and she couldn’t get her chair in and out of her car anymore. She was in constant pain. Her doctor diagnosed her with spinal stenosis, or narrowing of the spine, and scheduled her for surgery. In the meantime she relied on pain pills and sleep medication, but still was unable to rest horizontally.

“Is this just what happens after 25 years of being in a chair?” she wondered. “Am I going to just stay home and not do anything and live in pain and try to deal with it?”

With only days before her scheduled surgery, a friend suggested she consult with ADAPT Training, a gym near her Portland, Ore., home that specialized in spinal cord injuries. His persistence and her desire to avoid surgery overcame her skepticism, and she scheduled a visit. The lead trainer studied Peterson’s X-rays, discussed her issues, evaluated her physically and concluded ADAPT might be able to help.

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Optimistic but still skeptical, Petersen canceled her surgery and began attending one-hour therapy sessions two to three times a week. Within weeks she saw her pain decrease. The mobility she feared she had lost, returned. “I remember breaking down in tears on the table when I realized that maybe life could go on for me,” she recalls.

The quality-of-life questions Petersen found herself asking, and the medical dilemma she faced are asked every day by people with spinal cord injuries and disorders. And like Petersen, more and more people are turning to the growing number of facilities like ADAPT and California-based Project Walk that offer a new approach to rehab, and for some a new chance at healthy living.

Like Petersen, I found ADAPT through friends who couldn’t stop singing its praises. For the previous 13 years, exercise had not been a part of my routine other than my daily range of motion. I’d pushed myself as hard as I could during the first three years after I was paralyzed at the C5 level in 1998, but at some point just getting back to life outweighed the minimal physical returns I was seeing from exercise biking and wrist weights. Despite the lack of exercise, almost 17 years after my accident I had a clean bill of health and honestly wasn’t sure what a place like ADAPT could offer me.

It’s a refrain that Kandice Vinson, the director of therapy at ADAPT, has heard many times in her 12 years in the industry. “We’ve had people come in and check us out and say, ‘Oh you can’t do anything for me … I’ve been in this situation for this long. How are you going to do anything that’s different than what’s been done?’” Her response is always the same: “I don’t know what the future holds. I can’t promise you you’re going to walk again, but I can promise that the pains you have will be mitigated and we’ll get you stronger. You will be in a better spot.”

That was enough to hook me. After years of worrying I should be doing more physically, I figured there was nothing to lose — and who knows, maybe or maybe not — something to be gained.

The Evolution of Exercise-based Therapy

Some of my skepticism, and some of the skepticism I encountered from many long-time wheelchair users when I asked them their thoughts about places like ADAPT, comes from the simple fact that when we were injured there weren’t facilities like this, and almost no one was advocating the approach they use. “I’d been like this for 25 years,” says Petersen. “If I were fixable, the doctors would have said there’s help for this, right? But I didn’t hear that from the medical people. There were pain pills and isolated physical therapy, so I was skeptical.”

Project Walk started in 1999 in Carlsbad, Calif., but didn’t really start to catch on until a few years later. Vinson worked at the original Project Walk from 2003-2007 after graduating from college with a degree in exercise science. She says the curriculum on neurological injuries was black and white when she was in school. “The section you did in school on neurological injuries was pretty small, and it was generally, ‘This is the injury, this is what he or she can and can’t do, this is what you do as a trainer.’”

Dr. Daniel Lu, a neurosurgeon at UCLA, has watched the medical community slowly come around to the value of activity-based training as its understanding of the spinal cord, and how it works, has evolved.

“In the past, I would say 10 years, there has been substantial development in terms of our understanding of the capacity of the spinal cord and the central nervous system, and you know, the brain as well. Now we all know there is a lot of plasticity associated with the central nervous system, and that includes the spinal cord,” he says. “Previously spinal cords were only thought to be a network of cables, that’s it, there was no processing in the spinal cord … but it’s actually a very smart organ.” Lu says he urges people with SCI, both incomplete and complete to stay active. Also, he says “complete” is a misnomer that should be revised and changed.

As a sign of how things are changing, Lu is one of 11 medical professionals who have signed on to a new medical advisory board for Project Walk. “Literally two years ago, three years ago, some of those individuals you see on that board would not have returned my phone calls,” says Project Walk CEO Tim Yates. “The perception has changed dramatically, and they realize that what Project Walk has been doing and is doing, is not giving false hope, it’s not pixie dust. It is based on science and research and getting the real results.”

Yates joined Project Walk in 2009 and has overseen the opening of new facilities across the country while also working to shift the company’s messaging. He acknowledges that some of the bold promises of functional return and getting people walking during the company’s early days turned some potential customers away. “And what I’m hoping happens is that those people out there that got a bad taste of it years ago, I want them to come back and try it out again, because it’s a different company now,” he says. “I always tell people, give us a second chance, take a look at this firsthand. We have progressed so far with our treatment modalities and just with the way the operation is set up. It’s a different story.”

Reconnecting the Mind-Body Continuum

Tiffiny Carlson is typical of the type of people Yates would like to reach. A C5 quad for almost 22 years, Carlson has been aware of Project Walk, and the growth of similar places. “I always thought that maybe if I did put myself into that, I probably would get something back. I never thought I would walk again, but I always expected to get stronger,” she says. “But I finally figured I’m happy with where I’m at in my abilities and my house, so it never felt like a priority.” However, when a new Project Walk facility opened near her Minnesota home last October, she signed up.

Like many clients, Carlson started with a three-hour evaluation and then attended weekly two-hour sessions. With a stated goal of getting stronger, she divided her time between a mixture of activities including mat work, the Total Gym (a slanted weight bench) and standing. She was out of her chair almost the whole time, often in positions she hadn’t experienced in years. “I LOVE this,” she wrote in a blog entry documenting her experience for NEW MOBILITY. “Don’t get me wrong, I love my wheelchair, it carries my paralyzed body through this world, but it’s nice to be free of it.”

One of the centerpieces of programs like Project Walk and ADAPT Training is working to “connect with” or “activate” muscles below your level of injury. Trainers guide your legs through a variety of motions and ask you to concentrate on pushing or kicking. Often they will tap on the muscle group involved, trying to trigger a spasm. Instead of shunning spasms as an inconvenience, this new approach embraces activity as a sign of energy and something to build on. “You can actually use the spasms,” says Vinson. “Bottom line, it’s still a muscle contraction, so what can we do to train that muscle contraction so it can be functional, and so it can have a response?”

I personally had a hard time wrapping my head around the lower body focus and the different thinking on spasms. For me, both areas were pretty clear: I hadn’t gotten any return of function or sensation below my level of injury in 15 years, and I had no love for spasms. As my trainers moved my legs around and I repeatedly told them that I couldn’t connect or feel anything, I worried I was wasting my time. Unlike the upper body strengthening, where I saw improvements within days, the lower body focus seemed futile. Then one day, while stretching my upper spine, lying on my right side, I connected. It wasn’t much, just a sort of numb muscular feeling on the left side of my stomach, but it was definitely there.

Carlson had a similar experience. “There was a small movement that they noticed when I moved my leg out like a snow angel, which is super cool, and that’s like barely anything, but they put my leg in a zero gravity harness thing to see if it would still move independently and it did,” she says. “It’s just been really good to move. I feel more connected to my body. It’s the same kind of feeling that I get when I go to yoga … it’s that mind and body connection, where you can call it what you want, but you just feel more awake and more alive when you’re moving like that, and then you feel happier.”

Neither of us have any illusions about those flickers leading to miracles, or even translating into anything functional, but at least for me, the connection meant something different. I realized that over the years I had lost touch with much of my body, specifically the parts below my level of injury. I had accepted the doctors’ diagnoses and stopped listening to my own body. Thinking about Dr. Lu’s comments about how our understanding of spinal cord injuries is changing, and how the terminology that had defined me when I was injured in 1998 was now being rethought, made me realize maybe it was time to rethink my own approach to my injury and my health.

The Takeaway: Feeling Better

When I started at ADAPT around five months ago, my goal was to strengthen the muscles that I had and work towards more independence. I had some idea what to expect, but not a lot. What I’ve accomplished, and what keeps me coming back, are along those lines but different. I have definitely increased my upper body strength. My left arm, which was the weaker of the two, is noticeably stronger and more functional. My shoulders feel stronger and my range of motion is visibly improved. I’ve learned a set of exercises and stretches I can do at home, and I’ve come to value the knowledge and insight my trainers use to target specific muscles and areas in a way I never could on my own.

I count down the days until my next appointment for the genuine relaxation brought on by my trainers’ extensive stretching, and I yearn for that “exhausted” feeling I have when I finish a two-hour session. I had forgotten that feeling. As Petersen says, “For me it’s not like there is a point you reach and then you’re done — it’s like I have to do this the rest of my life if I want to keep moving.”

I’ve also been surprised how much I enjoy the atmosphere. Unlike outpatient rehab or many clinics, training gyms like Project Walk and ADAPT offer a lively, fun experience. I am surrounded by quads and paras and knowledgeable trainers, and the camaraderie is evident. Petersen appreciates the “empowering” atmosphere. “I don’t feel like I’m working with doctors and therapists. I feel like they respect people with spinal cord injuries as people and as athletes with abilities, and they focus on helping you with your abilities.”

Five years after turning to ADAPT in her darkest hour, Petersen credits it with helping her see a bright future. In fact, she can’t see a future without it. “I’ve told Kandice that if my family moves, then I’ll have to fly her wherever we are once a month,” she says.

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Is It Worth It?

For all the benefits of Project Walk and ADAPT, there is one — potentially dealbreaking — drawback: the cost. A one-hour session at Project Walk costs $100 to $115, depending on which center you attend. Sessions at ADAPT Training are $100 an hour. While some boutique health insurers have footed the bill, the majority will not. That’s a huge financial burden for anyone, especially someone who is likely already saddled with extra bills related to their disability. Project Walk CEO Tim Yates is well aware that cost is the most pressing issue facing his company. He calls the current price point “the bare minimum” the company can charge and keep its doors open, citing the cost of retaining educated staff and specialized equipment as the main expenses. Jerod Warf, the vice president of training at ADAPT, notes that an hour session with a generic trainer at most gyms runs between $65 and $100 and averages around $85. He says that’s a small premium to pay for the expertise and access clients receive.

Yates says he has the research to convince insurers, including Medicare and Medicaid, that the potential savings are a “no brainer,” but admits nothing is in the works. “I would love to say that there will come a time that this program would be covered, but I’ll be honest with you, I don’t have any of those people on speed dial, nor is it very easy for me to get in front of them, even in my position, to be able to make a compelling case for that.” He is developing a new funding mechanism to facilitate would-be clients’ ability to crowdsource the needed money. He noted that scholarships are sometimes available, as they are at ADAPT. “We’re doing everything on our end to make it as affordable as possible and trying to find ways to help people bridge that gap,” says Yates.

Perhaps it’s telling that since I started reporting this story, the Project Walk Carlson blogged about in Minnesota — which had just opened in October — closed its doors due to lack of clients. Carlson had been attending for free.

Despite the high cost, every person I spoke with who has attended similar facilities and footed the bill deemed the experience worthwhile, with many saying they couldn’t live without it. That ADAPT has 35 current clients, and people continue to travel to Project Walk sites from around the world, suggests that the services they are offering are more than “sophisticated expensive physical therapy,” as one Internet commenter posited.

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