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NRN

Life Is Not Over

Tim Butterworth has regained much of his function thanks to the NeuroRecovery Network.

Tim Butterworth has regained much of his function thanks to the NeuroRecovery Network.

By: Janelle LoBello

Name: Tim Butterworth
Injury: C5 burst fracture
Mechanism of Injury: Diving into pool
Date of Injury: 2007

"The key is definitely that life is not over."

These are words of 22-year-old, Tim Butterworth. Now active in rowing, photography, and a prospective neuroscience student, Butterworth lives by this belief. Even after a spinal cord injury in 2007 at the age of 18 from a diving accident, Butterworth wouldn't surrender to anything less than a fulfilling life.

Butterworth experienced a C4, C6 spinal fusion surgery with an iliac graft (hip bone was used to help stabilize the vertebra) and a titanium rod followed by many months of rehabilitation at Spaulding Rehabilitation Hospital in Boston. Also, as a Reeve Foundation NeuroRecovery Network participant at Boston Medical Center, Butterworth knows the definition of hard work.

Early rehab
When Butterworth first became an inpatient at Spaulding, he was unable to move anything below his neck. "I slowly got control of my biceps and shoulders and started to get some grip back in my left hand," explains Butterworth. He eventually graduated to using a power wheelchair and then a manual wheelchair.

While at Spaulding, Butterworth enlisted in rehab for the Lokomat device; the device is described as an exoskeleton (an external skeleton) with robotic joints at the hip and knee to guide the user's legs as they step along the treadmill. The technology is intended to reduce the need for some of the therapists during a training session.

"It was pretty successful for me," says Butterworth. "I was able to support my own weight and walk around with a walker a little bit, not for much distance, but I was able to get up right at least."

Throughout the early parts of his injury, Butterworth's biggest complaint was the affects muscle relaxer medications were having on him. "My doses got up to eight milligrams four times a day for Tizanidine and 20 milligrams four times a day for Baclofen," explains Butterworth who was at the time a full-time student with a 3.8 GPA and interning at MIT in the molecular dynamics laboratory. "Those are both, I think, right around the max dosage."

"Some people with Baclofen pumps don't have as many side effects," says Butterworth, "but the way I was taking it, I just turned into a zombie. I was sleeping 14 hours a day. I just had no time, and when I was awake, I would pass out all the time."

Trying to juggle rehab and school, Butterworth, his parents, and his doctor made the decision to take time off from school to focus strictly on his rehab and recovery. "We figured if I was trying to do them both [school and rehab] at the same time," explains Butterworth, "While I was still young, if I just took a couple of years to really get everything back that I possibly can, then hopefully be in a better position when I did get back to school to do it full-time and be successful at it."

From that decision, Butterworth researched the best rehab option for him. Upon talking to his roommate at Spaulding, Butterworth learned of the Reeve Foundation's NeuroRecovery Network.

The NeuroRecovery Network (NRN) is a cooperative network of cutting-edge rehabilitation centers designed to provide and develop therapies to promote functional recovery and improve the health and quality of life of people living with paralysis.

"He told me about the NRN and how it weaned him off all of his muscle relaxers," says Butterworth. "It got him a lot stronger. I looked into that and figured even if I got the bare minimum of what a lot of patients were reporting, it would be worthwhile. I applied, was accepted, and started in late summer 2010."

Most of my gains were from the NRN, admits Butterworth.

"Most of my gains were from the NRN," admits Butterworth.

Less meds, more walking
"Most of my gains were from the NRN," admits Butterworth. "The weaning was really successful. I got off 100 percent of Baclofen and Tizanidine, so I'm not taking any of it."

Though off the medications, Butterworth's muscle spasms did not entirely disappear. "I had to keep trucking through it," says Butterworth. "With the right stretches, mat exercises, and all the walking, I was really amazed at how quickly the spasms went away." "I still get them a little bit. I get the fine motor spasms in my hands so I have to stretch out a lot; I still get tight. But overall, I think it's less stretching than I was doing beforehand and I don't have all the other side effects, so it's really great."

Currently, at the NRN three days a week for two hours, Butterworth originally began his therapy at five days a week. He maximizes his therapy however he can through the NRN, physical therapy, and rowing.

Gains and improvements
Physically, Butterworth recognizes the gains in both his walking ability and strength. Though he was right-handed dominant, Butterworth taught himself to write with his left hand.

"I've noticed my right hand, I'm starting to get some grasp back," explains Butterworth. "I'm starting to get a little bit of strength in my right triceps and right wrist inflection. Those are the things I never really got back. I only had a twitch response in the right tricep, and nothing in wrist inflection, and I could only really wiggle my index finger just a little bit."

Butterworth's limitations are becoming less and less noticeable. "If I go out to a bar I can throw my crutches in the corner and stand for the evening," says Butterworth. "It's not like I have to sit down anymore. I can dance with friends."

Sweating and regular urination also increased improvements Butterworth is grateful to have back. These abilities are commonly lost in individuals who experience spinal cord injuries.

"I was only really able to sweat just above my nipples before," explains Butterworth. "Now I can pretty reliably sweat down to my waist or just below. I've been able to start urinating without a catheter. It doesn't happen every time, but I couldn't do it at all before, so I'm seeing all types of improvements."

One of the photos Butterworth entered in the 2011 Faces & Places Photo Contest.

One of the photos Butterworth entered in the 2011 Faces & Places Photo Contest.

Picture perfect
Another gain Butterworth is able to add to his list is the ability to put his photography skills to use again. After his injury, Butterworth was no longer able to physically hold a camera or use any of its controls preventing him from using it for two years stating that "it mostly just sat there."

"Now I'm strong enough to carry it all around," explains Butterworth, who first started enjoying photography when he was editor of his school yearbook. "I've been able to get out with more of my gear and go further with it. I really can't say enough good things about the NRN."

Having regained his ability to be a photographer again, Butterworth expanded his skills and used his personal connection to living with a disability to help create a photography program at Spaulding Rehabilitation Hospital.

"I'm not artistically really that great with photography," says Butterworth who was a Top Ten finalist in the Reeve Foundation's 2010 Faces & Places Photo Contest. "But I get the technical side of it, so that's kind of my role in the program we're starting. It's trying to figure out the right gear for people."

Spaulding is also home to the Greater Boston Chapter of the National Spinal Cord Injury Association in which Butterworth has been working with to coordinate the program. "We thought that whether someone is drawing, or painting, or sculpting, it's really easy for a disability to stand in the way," explains Butterworth. "But we thought that with photography, with the right equipment, that shouldn't be the case. There might be some limitations, but it should be easier to really get the result you're looking for through that medium than through some of the others."

Butterworth with his sister, Jancy, on Cape Cod.

Butterworth with his sister, Jancy, on Cape Cod.

What limitations?
Before his injury, Butterworth was expecting to be a mechanic. "Life for me now is so different from what I would have expected," says Butterworth, "and that's a good thing."

With hopes of making the most out of his life, Butterworth aspires to be a neuroscience student. He would ultimately like to be in the spinal cord research field. "I definitely know when I'm physically at a point where I can really devote time to school and work," explains Butterworth, "I'll have a strong future ahead of me in neuroscience."

Butterworth believes that personally he was able to adjust to his situation without being severely affected.

"I think that what happened to me is something that could bother you," says Butterworth. "It's something you have to take it in strides. I really have and I can't say that it's all because of strong willpower. I just got really lucky that for whatever reason. My head was in a state that it could just handle it. It just really hasn't fazed me."

With all the struggles Butterworth has gone through, he simply attests, "The key is definitely that life is not over. You certainly have to reevaluate your priorities and take a fresh look at what you're capable of. There are so many things that are still open to anyone, even people with the most complete damaging injuries. The biggest limitation you are ever going to face, paralyzed or not, is what you allow yourself to do."

Learn more
Learn all about how the Reeve Foundation's NeuroRecovery Network is developing and expanding access to activity-based therapies, resulting in improved health, quality of life, and function.

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Continue Christopher Reeve's LegacyPhoto by Timothy Greenfield-Sanders