ALS 02

After a grim diagnosis, one man seeks to experience life in the moment.


   Something wasn’t right. Tom Masters, 50, had been running for many years, yet his muscles were now becoming sore afterward. He had also developed a limp. Every time he walked about a hundred yards, his left calf muscles stopped working.

   The weakness persisted, so the Anaheim, Calif., resident saw his doctor and had an ultrasound examination in November 2007. The tests were inconclusive, so Tom’s physician referred him to a neurologist.

   While browsing at Barnes & Noble a few days after the ultrasound, Tom decided to peruse a few medical books about his curious condition. He matched his symptoms with various diseases and realized amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, was the most serious similar condition. Tom hoped he didn’t have ALS.

   Two months later, Tom saw Dr. Amir Shokrae for a neurological examination. Dr. Shokrae checked Tom’s reflexes and tested his ability to walk on his toes and heels. He also examined Tom’s eyes and ordered blood work. Everything seemed normal.

   Three weeks later, Tom returned to Dr. Shokrae’s office for an electromyography (EMG) test. The procedure involves testing the electrical activity of muscles. EMGs are painful, but unlike other exams, including magnetic resonance imaging (MRI), the results are available immediately.

   During the first part of the test, the neurologist placed electrodes over Tom’s body and stimulated the nerves with an electrical shock. Once again, everything was fine. In the second part of the test, the neurologist placed small needles in Tom’s muscles and measured the electrical signal transmitted when Tom flexed his muscles and when he remained still. The tests indicated a “dirty EMG,” meaning the results were abnormal.

   Tom looked at the exam room floor and asked, “So what do you think?”

Dr. Shokrae said, “Some kind of motor neuron disease.”

   Tom had never heard of the phrase, but since his worst fear was ALS, this seemed to be an encouraging development. He popped his head up and said, “Oh, that’s good. I was afraid it might be ALS.”

About ALS

Amyotrophic lateral sclerosis (ALS) often referred to as "Lou Gehrig's disease," is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. The progressive degeneration of the motor neurons, which reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body, eventually leads to their death. When the motor neurons die, the brain loses its ability to initiate and control muscle movement. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.

   Dr. Shokrae paused and looked Tom straight in the eye. “Well, that’s what I’m suspecting,” the doctor said.

Tom was overwhelmed by the news. Shock numbed his other emotions.

   Dr. Shokrae told Tom that the disease spreads rapidly and he should travel while he still had the chance.

   After his appointment, Tom called his wife, Heidi, from the parking lot to break the news. Heidi went silent. Five seconds later, she whispered, “I love you.”

   A father of four, Tom was transitioning from raising his children at home to living alone with his wife. His two sons, Adam and Nathan, had already moved out, and his two daughters, Anna and Noelle, would soon be leaving.

   Tom was a successful engineer at Broadcom, a company that specializes in the design and sale of computer devices. He loved playing golf and softball in his spare time.

   After speaking to Heidi, Tom drove to work. He couldn’t concentrate at all at his job. The shock about his diagnosis persisted for more than two weeks. It invaded his every thought. Driving to work gave him time to contemplate his situation. Tom knew he’d lose the ability to drive. He wondered if he’d live to see the upcoming Olympic games. He pondered whether it really mattered to him who would win the presidential election.

   He cherished every second with family members. He wanted to be with them more often. The first Saturday after his diagnosis, he hiked in Laguna Woods with Heidi and Nathan. It was a beautiful, clear morning, but since it had rained that week, the parks department had closed the trails because they were soaked. Tom and his family ignored the signs and headed into the hills, but a returning group of hikers warned them about rangers issuing citations. Tom thought the rangers would make an exception since he was dying, but he and his family decided to turn around.

   They eventually found a bluff at the back of a housing tract that had a trail behind it. The family had a great view from the trail, and Tom marveled at God’s beautiful creation.

   The next day, Tom and Heidi went to the Long Beach Aquarium. For the first time, Tom struggled to climb stairs. He also felt uncomfortable when he ran into a Broadcom colleague. Tom felt different from his friend. ALS continued to rule Tom’s thoughts. His career goals no longer interested him. He’d have problems sleeping, so he’d stare at the ceiling. Tears would stream down both sides of his face. He kept trying to think of a way to fix his disease. “There must be something I can do,” he thought.

   He wondered what it would be like to die. Most ALS patients die of diaphragm weakness; they slowly lose the ability to breathe. Tom kept a journal of his thoughts that he could not bear to re-read.

ALS 06

   On Feb. 6, 2008, Roger Frick, Tom’s pastor, called. Tom cried as he told Frick he could no longer talk to God. Frick listened and taught Tom to pray the way Jesus did the night he was betrayed.

   “It’s OK to ask for God to heal your ALS,” Frick said, “But also pray for strength, that if it is God’s will that you must endure this, then to do so with courage and dignity in a way that honors him. You still have a lot of living to do.”

   “You are great at counseling people,” Tom said, although he didn’t believe he had much living to do.

“I love you, and God loves you,” Frick answered.

   Their conversation lasted more than two hours. They prayed together over the phone. Tom felt an amazing sense of peace afterward; that feeling has not left him.

   Tom resolved to live his remaining days with acceptance and courage. He followed his neurologist’s advice to travel, and he also felt an urge to contribute to the ALS community.

   In March, Tom embarked on a long road trip to Canada with his son, Nathan, starting in the Pacific Northwest. He could walk long distances, but when Tom traveled to Hawaii in April, he felt weaker and had to buy a cane.

   In June, he took his family to Walt Disney World. He had to use a wheelchair because he couldn’t walk with a cane for an entire day. This made him feel self-conscious and embarrassed. He hoped he wouldn’t see anyone he knew at the park.

Tom didn’t like using a wheelchair, but he gradually became accustomed to it.

   He went to Chicago with his son, Nathan, in September 2009. In May, he and his wife attended Adam’s graduation from Navy boot camp. Tom realized he faced new challenges. Hotels had to be accommodating; there had to be plenty of space and grab bars around him.

   Six months later, he journeyed to New Zealand and Australia, where he snorkeled at one of the Seven Wonders of the World: the Great Barrier Reef. His brother, Brad, helped him walk to and from the launch platform. Tom’s feet were very floppy and paralyzed at the ankle. Tom had snorkeled many times, but this was to be the last because he had difficulty breathing. He saw fish of all colors and even spotted a shark.

   The next month he embarked on a road trip across Texas, Utah, New Mexico and Nevada with his wheelchair van. Tom and his family traveled in the midst of a cold front. The pretty scenery included a light dusting of snow on the mountains, the trees and the roadside. Though there were challenges, like sidewalks being too slippery for his wheelchair, the trip was fantastic.

Tom knew he’d have to use a feeding tube; ALS affects the swallowing muscles. Though the implantation lasts less than 30 minutes, the first couple hours are painful.

   During conversations with co-workers and family members, the idea of skydiving arose several times. Tom knew he had to skydive before the implantation surgery.


   In May 2011, Tom skydived with five friends, including the president of the local ALS Association chapter, Mark Hershey. About 25 other friends and family members came to the airport to watch. Tom jumped with his instructor, who had a chute and had Tom strapped to his belly.

The experience was uplifting. When he jumped, Tom felt a weightless sensation, and then as though he was lying on a loud, windy waterbed. When the chute opened, the instructor gave Tom the controls and let him make some turns. Nothing was blocking his view; Tom felt completely free. He thought that this must be what it felt like to fly. When they finally landed, Tom couldn’t stop giggling.

   In July, he sat in the passenger seat of a racing car, speeding at 140 miles per hour along the California Speedway. It was a dangerous ride; there was no roll bar or five-point harness. The race was a 20-minute timed event; the course included half the oval of the speedway and an infield track consisting of S-turns and a few hairpin turns.

In late July, Tom visited Adam, who was serving in the Navy in Washington, D.C.

   In August, he returned to Hawaii to attend a wedding. This time, the experience was bittersweet. Now he couldn’t snorkel, hike or get to the beach by himself. During one special moment, Tom’s family placed him in a lawn chair and carried him to the shore. He sat there for half an hour with the waves splashing at his toes.

   To promote ALS awareness and raise funds for research, Tom works with the ALS Association and participates in the annual walk in October. He participated in the Los Angeles Marathon on March 20, 2011; a team of people carried him through the 26-mile course. Tom felt the marathon was symbolic of his life: It’d be difficult to go on without the help and support of his family.

   On June 9, he recorded a show called “Collage” on 88.5 FM, KSBR about ALS. He also received help from old friends. Tom sent a Facebook message to his best friend from high school, whom he hadn’t talked to for 10 years. Dan McKechnie ran a video production company. McKechnie had already contracted with the ALS Association to produce three 90-second public service announcement videos that would be shown at an Angels game. When McKechnie found out Tom had ALS, he wanted to do a fourth PSA video with Tom’s story and his family as the background.

Tom agreed. He enjoyed taping the PSA because it was another opportunity to spend a day at the park with his granddaughter.

On July 3, 2011, when the Angels showed the video at the stadium, Tom met and took pictures with several baseball greats from the ‘70s, ‘80s and ‘90s.

   ALS patients generally live two to five years after diagnosis. The disease affects everyone differently, but respiratory failure or suffocation is often the cause of death. Tom’s disease has spread to his legs and hands; when he lies down, his breathing is 48 percent of the normal rate. Sometimes he breaks down and sheds a tear, but he does not have setbacks. Tom’s family, especially his granddaughter, who was born in October 2009, and his faith make his life meaningful.

   He finds comfort in his Bible, especially in Matthew 28:20, “I will be with you always, even to the end of the age.” Tom says, “Thanks to Christ, my story isn’t finished yet... but I can tell you it has a happy ending.”

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