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Band of Brothers

“I have an upbeat personality, and I’ve always been outgoing, happy, competitive, and a glass-half-full type of guy.”

By itself, that statement would not seem worthy of special notice. But it took Scott McGuire about four minutes to create that sentence, spelled out one character at a time on a computer controlled solely through the movement of his eyes.

Scott McGuire

Scott McGuire and Tyler Smith ’90

Scott has Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease. ALS is a disease that usually attacks both upper and lower motor neurons and causes degeneration throughout the brain and spinal cord. In short, the mind is clear, while all muscle function deteriorates.

As an undergraduate student at IUP, Scott enjoyed an active life that included sports, mountain biking, fishing, and hiking. He met his future wife, Heidi Hill, in a communications class taught by Richard Lamberski, the TKE advisor during the 1980s and 1990s. Scott also joined the Tau Kappa Epsilon (TKE) fraternity, a brotherhood that made an impression on his life far beyond his expectations.

Scott earned an IUP degree in Natural Science in 1990 and a Biology Education degree in 1993 and became a biology teacher at Greater Latrobe School District (GLSD) in August 1994. He taught Applied Biology and had a vegetable garden, a piranha, and snapping turtles in the classroom to add variety. He also, from time to time, coached JV basketball and varsity softball.

In the summer of 1994, Scott began noticing subtle signs of tremors and spasms, although he wrote them off as signs of old injuries. He married Heidi in July 1996; in May 1997, he realized something was seriously wrong.

“I was working out lifting weights. My left arm was all of sudden weaker than my right,” said Scott.

After three full-body nerve conductivity tests (each test reads the currents in different muscles of the body and sends a pulse of electricity through the muscles to check nerve conductivity), two spinal taps, and blood work, Scott was diagnosed with ALS in November 1997.

Visiting Disney World

Visiting Disney World in August 2009.
    Front, from left: Will Nelson (5), Kennedy Nelson (3), Scott McGuire, Gavin McGuire (4), Liberty Nelson (6)
    Back, from left: Gretchen Nelson (1), Eric Nelson, Heidi McGuire ’93, Randy Nelson (8), Brooke Nelson (9), Susan Nelson

“What’s weird about an ALS diagnosis is that they can only diagnose it by ruling out everything else,” said Scott.

As Scott’s illness progressed, the faculty at GLSD showed their support and generosity by donating their sick days to him and also starting a fund for medical needs.

“I am indebted to all the faculty members at GLSD,” Scott said. “They gave me more than just sick days through their generosity.” He retired from teaching in June 2001.

In the meantime, the TKE brotherhood bond had been growing stronger. Although Scott and his fraternity brothers had remained close after graduation, Scott’s diagnosis brought them all together again.

“Much of the support they have given me came long before I was ever diagnosed,” said Scott. “The shaping of my will and determination has much to do with our interactions as a brotherhood.”

The TKE brothers were shocked to hear Scott’s diagnosis, and many poured themselves into researching the disease.

“We found out that the average person typically lives three to five years after diagnosis,” said TKE brother Dan Sarver ’90. “Fortunately, the statistics proved wrong in Scott’s case, and he has been with us eleven years since being diagnosed. The statistics could not possibly factor in the kind of person Scott is.”

Greek Week truck pull

Just before Christmas Break in 1987, the TKE fraternity competed in a Greek Week truck pull event.
    From left: Mike Kalafsky (hidden), Pat “Tank” Ferance (hidden), Mark Foley, Tim “Chang” Eckert (hidden), Bill Vigna ’91, and Scott McGuire in the lead

Since Scott’s diagnosis, his TKE brothers united around him and supported his family in every way possible. When they learned that Scott had ALS, they organized a camping trip to show their support. Longtime friend and fraternity brother Bob Zernick built Scott and Heidi’s house. Several brothers show up regularly for what they call “help days” to assist in regular maintenance and seasonal outdoor work.

“Our national motto is ‘TKE, a fraternity for life,’” said Sarver. “In college, you are young and invincible and you do not really think about those words and what they truly mean. Looking back, they were right.”

“Scott was always voted the most athletic in the fraternity. He was tall, strong, and quick—a good combination,” said TKE brother John Cory. “I think we won Greek Week all three years that I was there. Scott was always pivotal because he was so good at everything.”

The TKE brothers all remembered the “Tug-a-Truck” truck pull events during the annual Greek Week competition.

“We were “average Joe” guys. We did not have the strength; we were small, but we had big hearts,” said Eric Nelson ’91.

“We were no match for Sigma Tau Alpha when it came to core strength, muscle mass, and a low center of gravity,” said Tim Trebilcock ’89. “At this event, and in everything else we did, Scott never let the metrics matter—it was all between the ears. His motivation, will, and determination were infectious to us all.”

TKE won the match.

“Scott was and still is everything that TKE represents,” said Dan O’Leary ’90. “He is that guy who puts all others before himself. He is that diverse individual who can talk to a stranger like they have been best friends forever. He is that guy who everyone wants as their big brother. He is the teammate that can be counted on when the score is tied and you need that last-second touchdown. He is that voice of reason when all others are silent. He is the motivation to push yourself harder even if all others have given up on you. He is truly an inspiration for all that know him. I am proud to say that I am Scott’s friend. I am proud to say I am a TKE.”

TKE brothers

TKE brothers reunited at the home of Dan Sarver on August 22, 2009, to honor Scott and Heidi. The group celebrated Scott’s Disney trip and were shown his new equipment.
    From left, standing: Dan Sarver ’90, Tyler Smith ’90, Andy Boruta ’90, Rich Engberg ’91, Brian Guess ’91, Tom Peduzzi ’91, Greg DiLello ’92, Jim Cole ’90, Carl Leicher ’95, Tom Shaheen ’89, Lee Koller ’91
    From left, kneeling or sitting: Sean Mason ’89, Allen Betts ’94, John Cory, Scott McGuire ’91, ’93, Scott Scherer ’92, Richard Lamberski, Tim Trebilcock ’89
    Not pictured: Tim Swiatek ’89, Joe Caruso ’88, Lisa Edgar Sarver ’91, Heidi McGuire ’93

In March 2009, Scott received a MyTobii P10, a portable, eye-controlled communication device with 15-inch screen and computer, all integrated into one device that can be plugged in anywhere and mounted on a desk, bed, wheelchair, or any other suitable location. It has helped bring Scott back up to speed in communication.

“The Tobii has given me back some freedom,” Scott said. “I love using it, although I still enjoy trying to talk on my own. It’s more personal.

“There wasn't much of a learning curve,” he said. “Within five minutes, I was using it. Once you’re on, you just look wherever you want to go. Like anything, you learn shortcuts. For example, spelling something phonetically makes you quicker. ‘U r 2 b hap e 2’ is way faster than ‘You are to be happy too.’”

Scott keeps his days busy working on the computer, designing different types of media, playing fantasy football and on-line poker, keeping in touch with family and friends through e-mail and Facebook, and watching his son grow up.

At Disney World

At Disney World: Eric Nelson ’91, Scott McGuire, Mickey Mouse

Recently, the TKE brothers organized a trip to Disney World for Scott, Heidi, and their son, Gavin, who was born in 2005.

“It had been something I had been thinking about for a few years, but it was always a dream,” said Scott.

TKE brothers Eric Nelson and John Cory made that dream a reality. While there were many logistical barriers to work through, Scott and his family, along with Nelson and his family, made the trip to Disney in August 2009.

“Probably my favorite moment came on the last night we were there,” Scott said. “Gavin was on the Dumbo ride and every time he came around, he yelled, ‘Hi, Daddy!’”

“I’m very lucky and blessed to have Heidi and still be at home,” Scott said. “I’d like to add that without my great nurses, the world would be a much darker place.”

“His disease for many of us has been a blessing,” said Nelson. “He has helped others to achieve a far greater good. Scott told me that when he dies is not the issue. The issue is how he lives.”

Caitlin Hamryszak is a senior Communications Media major with a minor in Journalism.