No Limits: Anaheim Man with ALS Focuses on Living, While Spreading Awareness of Lou Gehrig’s Disease

February 4, 2014

This Friday, The ALS Association will honor LA marathoner and world traveler Tom Masters at its “Heroes Living with ALS” luncheon at the annual Leadership Conference and Winter Walk Forum in San Diego, Calif.

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Heidi and Tom Masters (left and center) with granddaughter Hayley Manning on Masters’ lap at the 2010 Irvine Walk to Defeat ALS. Image courtesy of The ALS Association Orange County Chapter

A source of inspiration to all who meet him, Masters frequently interacts with others with Lou Gehrig’s Disease. He has worked closely with the Orange County Chapter since February 2008, a month after he received his ALS diagnosis. The chapter’s monthly support group meetings he attends in Orange County allow him and his wife of 35 years, Heidi, to disclose the challenges associated with the disease that they have encountered. Masters uses a motorized wheelchair for mobility along with a handicap-accessible van to get around his hometown of Anaheim.

“Support groups are nice because we get to share information and help each other out,” Masters says.

Heidi Masters serves as her husband’s primary caregiver and assists him with performing daily living activities. “She is always here helping me,” Masters concedes. In 2013, Heidi was diagnosed with Alzheimer’s disease. “She is my arms and legs, and I help her to remember things,” he admits. A home health care worker also provides aid to him three days a week, and one the Masters’ two daughters, Noelle Carden, and her husband Matt have moved in with the couple to help with their care.

Masters has found camaraderie with other ALS families at the Irvine Walk to Defeat ALS®. His team, “The Masters of ALS,” have raised more than $39,700 since 2008. However, what he finds most significant about the Walk is the atmosphere around it.

“The Walk helps out the organization, but going there is more than that. We are surrounded by optimism and hope. It is truly an uplifting experience,” he acknowledges.

“Tom Masters does not consider himself a hero, but he has HOPE, and Tom brings HOPE to our entire organization,” said Jared Mullins, the chapter’s Executive Director.

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Tom and Heidi Masters are surrounded by their children and grandchildren on Christmas Eve 2013. Image courtesy of Tom Masters.

Masters, 57, a retired electrical engineer, imparts positivity and the sense of hopefulness that Mullins describes in a “Text to Give” video campaign the chapter created. The minute-plus clip, which educates viewers about the disease, shows him with his young granddaughter, Hayley Manning, riding on his motorized wheelchair outdoors while his daughter and Hayley’s mom, Anna, snaps photos of her father and child. In the video, he discusses ALS and the need to fund research for treatments and a cure and tells viewers to “Focus on the living and not the dying.”

Since being diagnosed with Lou Gehrig’s Disease six years ago, Masters has lived. He has visited Australia and New Zealand, where he snorkeled in the Greater Barrier reef. He has skydived. He has trekked through the American Southwest with his son Nathan. He has travelled to Kona, Hawaii with his family, and he has participated in the Los Angeles Marathon.

The marathon provided Masters with an opportunity to complete a 26 mile footrace and spread ALS awareness. Chapter Board President Mark Hershey started the annual tradition of having a person with ALS participate in the marathon in 2000. In March 2011, Masters embraced this challenge. Others living with the disease pushed his wheelchair for the first 24 miles of the race, while his family ferried him across the finish line. He completed the marathon – in rainy weather – in five-and-a-half hours.

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Up in the air: Masters skydives over Southern California. Image courtesy of Tom Masters

Masters deemed this event “one of the most amazing experiences that I have participated in.” For the marathon, his wheelchair was fitted with a banner showcasing the chapter’s logo and contained the words, “Racing for a Treatment & a Cure.”

Another remarkable experience that Masters participated in was a skydiving expedition over Perris Valley, Calif., three years ago. The “Text to Give” clip shows Masters stepping from a plane into the air, freely flying mid-air in a red, white and blue jumpsuit, with assistance from a professional skydiver. Those who watch the video will witness the wonder and excitement on Masters’ face as he floats through the sky, unencumbered by the physical restraints the disease has put on him.

The image clearly illustrates the reason why Tom Masters motivates the chapter and his community: He refuses to let ALS limit him. 

Read the press release.

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