Clinical Neurosciences Center
Mark Whetman - Former ALS Patient
Jun 1, 2011 1:00 AM
Making One Patient's Dream A Reality
(Article excepted from Gray Matters, spring 2011 issue)
That’s exactly what happened for Mark Whetman, a divorced father of four boys, who lived in Sandy, Utah. Mark adored his sons and loved spending time with them and with Gay, his ex-wife who became his best friend. Perhaps second only to his love of family was Mark’s passion for cars, which he honed during years spent working various jobs in the auto industry.
In early 2008, after Mark’s family noticed a deterioration of his speech over the course of the preceding year, Mark visited an otolaryngologist, who referred him to a neurologist. The neurologist in turn sent Mark to the Neurosciences Center, where he was diagnosed with bulbar ALS in June 2008.
“Mr. Whetman suffered from difficulty with speech and weakness in his left arm,” says Mark B. Bromberg, MD, PhD, Professor of Neurology and Director of the neuromuscular specialty clinics. “I reviewed his history, performed a neurologic examination, and repeated a limited electromyography (EMG) study to confirm a diagnosis of ALS. My staff and I made suggestions to enhance his independence and comfort, including prescribing Rilutek®—the only medication approved in the United States for the treatment of ALS—and medications for emotional lability. We also recommended computer-based augmentative communication devices, offered nutritional guidance, managed episodes of pneumonia, and provided emotional support for him and his family.”
“Mark was one of the first patients diagnosed with ALS that I worked with after I started my job at the clinics,” says Bernadette Tallon, RN, Clinical Nurse Coordinator. “He was a tough guy who was in great shape and was used to doing things with his hands, so the news of the diagnosis was very difficult for him to hear. Although he had been losing weight and choking frequently, he initially resisted the placement of a feeding tube. I eventually convinced him the feeding tube would allow him to still do many of the things that made life worthwhile for him, and that there was no need to give in simply because he couldn’t eat traditionally. That really resonated with him, and we were friends from then on.”
A Legacy of Love
Throughout the next year and a half, Mark visited the clinics at the Neurosciences Center every three months and tried to live as full and normal a life as possible, leaning on his father for help with daily tasks and visiting Gay and his sons often. In early December 2009, he confided to Gay that he had always wanted to attend the Daytona 500 stock car race. Through the generosity of family, friends, and Ford Racing, Gay procured tickets for herself, Mark, and the boys, and raised enough money to fund the trip.
A potential wrench in the family’s plans arose when the airlines balked at allowing Mark on a plane with three assistive devices. That’s when Tallon stepped in. She wrote a letter of medical necessity to the airline, which agreed to provide Mark with the equipment he needed during the flights to and back from Florida. Because Mark would not be allowed to take the devices off the plane when the family arrived in the Sunshine State, Tallon arranged to have a representative from a medical supply company meet the family and provide Mark with loaner equipment to use during their time in Daytona.
Thanks to Tallon’s diligence, the Whetmans had a weekend of priceless memories in Florida in February 2010. Mark, Gay, and their sons attended two days of racing and received VIP treatment at Daytona International Speedway. Mark met several NASCAR celebrities and attended the drivers’ meeting before the Nationwide Series race on Saturday.
“As everyone prepared for bed on Saturday night, Mark—who was communicating via writing by that time—wrote the boys and me a note,” says Gay. “It said, ‘Goodnight. It’s good not having to text you guys; instead, I get to say goodnight in person.’ That’s a memory the boys and I particularly treasure from that wonderful trip.”
Mark passed away on March 1, 2010, at the age of 49,two weeks to the day after the family returned from Florida. Gay will never forget the kindness Tallon showed her family throughout Mark’s illness.
“The Daytona 500 trip means the world to all of us because Mark’s family meant the world to him,” Gay says. “Tallon ensured we had everything we needed to go. Just before Mark passed away, Tallon spent a lot of time talking with me, and I’ll never forget the sadness in her voice when I told her Mark was gone. We miss Mark terribly, but his legacy of unfailing love for his family will never be forgotten.”
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