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Rob Summers: Robust Recovery from Pioneering Research

Rob Summers
Rob Summers

Rob Summers was known for having what they call a 12 - 6 curveball. It's the nastiest pitch in baseball. "That's the one that breaks straight down, clockwise," he says. "I also had a mid-90s fastball and a very effective cutter. I had gone in as a starter but because of my velocity and ball movement, I was moving toward being a closer."

In July of 2006, Summers, not yet 21, was playing for the Aloha Knights, based in Portland, OR, part of the West Coast Collegiate Baseball League. He was headed toward his junior year at Oregon State, which had just won the college World Series. "Ever since Little League it had always been my dream to play professional baseball. I was in the best shape of my life, pitching as well as I ever had, and continuing at that rate, I was expecting to be a key player on the college pitching staff. Everything would have fallen into place for the Major League Baseball draft the following year."

Pro ball wasn't meant to be. That July Summers was mowed down by a hit and run driver. He was spinal cord injured, paralyzed below the chest.

Last May, however, news broke of Summers' remarkable recovery. In an experiment funded in part by the Reeve Foundation, he was the first patient to get an epidural stimulator implanted over his spinal cord. The epidural stim, plus aggressive Locomotor Training on a treadmill, enabled Summers to stand on his own, take steps and after seven months, to the surprise of the research team at the University of Louisville and UCLA, regain voluntary motor function when the stim was on. Even more surprising, Summers regained bladder control and near normal sexual function, even when the stim was off. The research team speculates that this unprecedented recovery was due to the epidural stim awakening spinal nerves or by way of nerve sprouting or regeneration triggered by training.

The Rob Summers story is about the long road to scientific discovery. It's also a testament to stubborn motivation; there is drama, even romance. Summers tells his story to Reeve staffer Sam Maddox.

So, the driver hit you and just left you there?

Right. It was a Tuesday night. I was going out to my car to get my workout bag. I was standing at the end of the driveway; in the corner of my eye I saw headlights coming around the corner too fast. The car took out my legs, I flipped up on the hood, landed on my neck at C6, leaving me paralyzed from the elbows down. I was trying to yell for help but nothing would come out. The car kept going. About four hours later a neighbor found me. My ankle had been shattered; there was blood everywhere. I was unconscious.

It's not fair to speculate but supposing someone had found you sooner?

I know about the window of early acute care and I did speculate: what if I had been found earlier. But after speaking to my surgeons, they said I had been one of six hit and run victims in Portland that week, that I had come in with the worst injuries. I had far more severe injuries than the other five in the ER with me. They thought I wasn't going to make it. But as it turned out I was the only who survived. I was able to leave the ICU in three days.

Then what, rehab?

I was in trauma care for seven days and was transferred to an inpatient rehab center; they wanted to keep me for three months. I convinced the doctors at about six weeks to let me go home.

Had you plateaued?

No, I was still recovering. I thought I could improve more being at home trying to figure out how to take care of myself as opposed to having everything done for me. As I have learned through my sports career, anytime I am put in a situation where there is adversity involved, overcoming that makes me stronger mentally and physically. From day one, I set some very high goals. I knew to achieve those I'd have to be out of the hospital.

Rob Summers
Rob Summers

So, coming to terms, getting used to the idea that there is a tomorrow ...

It was very difficult to comprehend everything. Overwhelming. Being told I will never move again, never feel again, never stand again, never walk again or never play baseball again, I had that going through my head as well as trying to learn what all this means. I mean, learn how I can fix it. The most difficult part to comprehend was that my goals and dreams, since I was a little kid, everything I had ever known, baseball, was taken from me in the blink of an eye. But I learned that moping or dwelling on the situation and saying the what-ifs, it would only put me further into a mental state that would be harder to improve.

That transition isn't easy.

Definitely there were days when I was very frustrated, upset, sad about the whole situation. What I could have been doing, where I could be today, those kind of feelings would come in but I would look towards my support system. I had friends and family to fall back on when I wasn't able to be strong for myself.

You said you set goals. What were these?

Initially, to get my hands back. I couldn't feed myself, couldn't flip through the channels with the remote, couldn't do anything with my hands. I exercised my hands six to eight hours a day. My right pointer finger came back first, then I could move all fingers, in unison, then I could individualize each finger, then, after about a month, I could make a fist. I worked on strengthening it until I could pick things up again. Eventually I regained strength to the point I could do pull-ups and hold my weight on a pull up bar with just my fingers. My next goal was to regain feeling and to be able to stand independently, then to take steps on my own.

What was the word from the physical medicine professionals around you?

They were very positive with me but they also tried to keep my goals realistic. They would say, 'That's a great goal, great thing to work toward, but as you work with that let's get you comfortable living day to day life in a wheelchair.' It was my doctors who said I would never stand again, walk, move, feel again. I said to them, 'Obviously you don't know me very well. When I set a goal, I achieve that goal, no matter how long it takes.'

So you went on your own ...

At that point, I knew that instead of passive hospital therapy I wanted to find something more physically challenging. I ended up at Project Walk at Portland [now closed]. I was there a year. This helped me get my hands and upper body stronger. I said to myself, 'OK, now I've got my first goal done, now on to next, to stand.' They did good things in Portland but I felt there were other places in world that could do more.

There's a lot to sort out.

My mom and dad were on the Internet nonstop. We started sending emails to every Reeve Foundation NRN [NeuroRecovery Network] center in the U.S., to doctors and rehab centers from London to Israel, China, Brazil, all over the world. We tried to match me with what we felt was the best program. We ended up at TIRR in Houston at the NRN center. The first time I went down I didn't qualify. They sent me home to continue my training. I was too complete. I spent the next six months getting stronger. Finally we got a call from TIRR; they wanted me back down there.

You strapped in and went to work?

I met with Susan Harkema in Houston; she was in from Louisville, KY, doing a training. She liked my attitude, she liked how much I had recovered on my own just through my work ethic. After about three weeks at TIRR she invited me to Louisville. I liked the program, everything they were doing was absolutely what I wanted to do. Susie got me doing daily doubles as they called them, stepping in the morning on the treadmill, then stepping in the afternoon. I did upper body exercises in between just to try and qualify for a human experiment she had hinted to me about. I did all I could on my own. I plateaued for a year and a half, two years.

As it turns out, that's what the experiment called for – for you to have leveled off – no motor function, some sensation.

Dr. Harkema didn't really tell me much. She never told me that I had to be at plateau level. But I learned what I could about this area of science, what Reggie Edgerton has done at UCLA with the animals and what Susie and her team have done with the NRN. I read every article dating to the late 1950s.

So you're doing locomotor training for 26 months and then one day, hey, you are it for the big experiment?

After I had done all those months of sessions Dr. Harkema goes, 'Well, we think we want you to be the first candidate.' She never told me specifically, but from what I've heard from trainers is that it had to do with my athletic background, my drive, determination and focus, as well as my willingness to go through this.

Your parents deserve major credit ....

My mom was supposed to retire five years ago. She's a school teacher; she kept working to make sure that I was taken care of. Everything I did in the research was funded by grants and the Reeve Foundation, none went to me. My family supported me the entire time.

Now the date has been set for surgery? They laid it all out for you?

The FDA came in in November 2009 and said the team in Louisville could proceed with the first human. Within two and a half weeks, we were in surgery. The last thing I remember, I saw doctors and scientists all in lab coats or gowns, there must have been 50 people in there. Before I went under, one of the doctors said, 'Ladies and gentlemen, we are about to witness history.' Up to that point I had been too close to all of this to understand the big picture -- I realized then just how many people had gone into making this happen. I understood how big an impact this was going to have.

Any second thoughts?

No. I signed a number of consent forms, which were pretty scary; there are so many unknowns. They listed everything and anything that could possibly happen -- including death and everything else. At some point you have to yield to it. I looked at it as having trust in everyone around me. I said, 'Lets go, let's do this.' Whatever happens, happens. I'm going in with an open mind so if it benefits me, wonderful, if it doesn't, then you guys will learn enough that will improve everyone after me and I'll later be able to come back to the new improved stuff.

OK, they put the stimulator in, sew you up. When did they turn on the switch?

We turned it on right after Christmas. I was excited and anxious after two weeks of bedrest. I didn't know what to expect. They said we're going to take it extremely easy for the first month until everything healed. On the third day, they said, 'Let's just see how it goes to stand.' They put me in a harness over the treadmill suspended 100 percent. They lowered it down and down until I'm standing, full weight-bearing. It was just an incredible feeling. I ­hadn't moved anything in four years. My legs were supporting me. There was nothing to help me balance. I could feel my legs working, I could feel my feet under me on the treadmill.

Videos of you standing up show you leaning forward from a seated position. This provides sensory input your nervous system needs?

Yes, you have to load weight on the legs to get the sensory input to trigger the pattern for standing. If you were to stand up now, you would lean forward, put weight on your legs and stand up. I do the same thing. Once my weight goes into my feet, I tell my legs to stand up, I pull myself up, my quads activate, my glutes activate, it pushes me up.

Everyone was surprised how soon the stim activated patterns for standing and stepping.

True, we accomplished in weeks what they thought might take years. Then, after seven months we found out that while the stimulator was on, I was able to voluntarily control my toes, ankles, knees and hips, on command. This was something that was completely unexpected. The research team didn't think that was possible.

And when it's off you have sensory function?

When I used to go out in hot weather, I was unable to sweat. My blood pressure would rise, I would get autonomic dysreflexia and a wide array of things. The summer after the surgery I was in Florida coaching a baseball academy –in the heat of the day in the hottest month, eight hours a day, it was hot but I was sweating. Also, I have feeling back when my bladder is full and can even void on my own. I used to have a bowel program, now it's when needed, as needed. Circulation in my body is better; I feel healthier overall, my skin has improved, I don't worry about pressure sores anymore. My cardiovascular is better. My lungs are better. My urologist a while back told me that in order to have kids I'd have to do this and that, and it was tens of thousands of dollars for everything to make it happen. More recently, he said I will be able to have a family completely normally.

When the stim is off, any motor function?

No. I am getting a little bit of toe movement but it's not enough or consistent enough to say I have motor function.

You still fire up the stimulator?

Two hours a day, an hour of standing and an hour of voluntary movement. I'm getting stronger everyday. I can stand independently for longer durations, without a break. I used to try for two or three reps. I can now pick my knee up and put it down, 40 times, that's huge progress.

A documentary is being made?

Yes, we want to show the process of what I've been through from surgery to the first few months of the training, We are also looking at doing a feature film, with more of my life story going in to it. My girlfriend is a screenwriter and actress, that's how I met her. We have a mutual friend from Portland. He called her and told her I was going through this amazing once-in-a-lifetime surgery, that we needed to document it. The only person he knew in Hollywood was Rachel; she put together a crew, came out as producer the night before the surgery, and filmed everything after that. We fell in love.

How far do you see this going?

I want to thank the scientists and the Reeve Foundation for supporting them. The ­researchers will test this in others, fairly soon. Then, I believe in the next two to five years, we are going to see lot more ­development and refinement. There is a lot of work to do but with improved technology and better understanding of the biology, I think in a few years we will see this in a clinical setting, in wide use around world. Epidural stimulation and training – and perhaps a drug that will come along – will give so many the opportunity to recover. They didn't expect me stand on the third day. They didn't expect me to move my toes and knees and hips on command in seven months. They didn't ­expect me to take steps. No one knows what the future holds. In my mind, it's up to how hard I work. How hard I want it. How hard I push myself.

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Continue Christopher Reeve's LegacyPhoto by Timothy Greenfield-Sanders