Family, friends and a voice he can count on = living well for Florida man with ALS
For Dan Sargent, 50, life is about family, friendship, loyalty, and having a good influence on the world through simple words and actions. That may have a lot to do with why good times have continued for Dan, a retired police captain, since the disheartening news came in 2009 that he had amyotrophic lateral sclerosis. He chooses to enjoy ordinary pleasures, like the sunshine that frequently surrounds his Florida home and Friday afternoon visits with buddies at the West Palm Beach Police Department, his workplace for 27 years. The progressive neurological condition, commonly known as ALS or Lou Gehrig’s disease, leaves Dan unable to speak, walk or use his hands, but he prefers making those around him comfortable to focusing on his own discomfort.
After receiving the diagnosis, Dan, his wife (and high school sweetheart) Mary, daughter Kelley, 23, and son Sean, 17, together found ways to adapt to their new situation. When they first learned of the DynaVox Vmax and EyeMax System Dan uses, for instance, at an ALS support group meeting and on a TV news show, Mary said they felt the technology would benefit Dan and set out to learn more right away. “We heard from several people not to wait until you’re in desperate need of it.” She recommends the same for others who lose their speech to ALS and suggests voice banking – recording messages for later use while their natural voice is still intact – something she and her husband did not have the opportunity to do.
In the course of the services and treatment Dan receives at the University of Miami ALS Clinical and Research Center, it became apparent that his natural voice would not always be readily understood. The center referred the Sargents to Nova Southeastern University’s speech clinic for an evaluation. Graduate students under the supervision of licensed speech-language pathologists presented various solutions for him to try and assisted with implementation of the DynaVox system he ultimately chose. Dan uses his EyeMax System to direct his daily care, read the daily newspaper online, control the TV and socialize. He cannot easily access an AAC device by touching the screen, so he commands the technology with firm yet gentle blinks of his eyes. Its email, cell phone and text messaging capabilities let him have steady contact with friends and relatives.
“It can go wherever he goes,” Mary said, proceeding to describe the standing and wheelchair mounts that keep the system within reach whether Dan is lying in bed, sitting in his recliner or relaxing in the backyard with his faithful companion Duke, the chocolate Labrador retriever that joined the Sargent household six years ago. For Dan, the convenience of the eye-gaze system goes beyond portability, Mary Sargent said. “He’ll even text me when I’m in another room of the house.” She likes that the device’s environmental control features have allowed him to reclaim some of the independence he knew before his motor skills decreased from effects of the illness. “I felt bad because he’d be watching TV and it would go to some stupid show. He had no way of changing the channel.”
The process of learning to use the device has been virtually worry-free. “It’s quite easy,” Dan said. In a thank-you note to the Nova folks composed and emailed via blinking, he described the boredom and isolation one can feel without the ability to communicate. But, he said, “The DynaVox has given me a new lease on life.”
Others have warmed up to it easily. Assistant Police Chief Dennis Crispo is “really astounded” by what the technology does for Dan. “It’s certainly added a quality of life to his life.” As one of Dan’s earliest mentors on the force, Crispo immediately sensed his positive energy and eventually came to consider Dan his right-hand man and now – perhaps more than ever – admires him for his dignity. An obvious reason Dan won’t let dealing with an incurable disease bring him down, Crispo said, is that he wants to be a good example for his children.
“He’s such a good sport about doing things that are hard for him,” said Dan’s sister Sue Hoelzer, and the upbeat spirit flows through his wife and kids. “They’re not sitting around having a pity party.”
The challenges often center on communication. One hot day when their sprinkler system was not working properly, Hoelzer and her husband John listened as Dan, in his diminishing voice, told them how to fix it. Social gatherings similarly posed a struggle. People didn’t talk much with Dan, Mary Sargent said, but they weren’t ignoring him. They just wanted to avoid stressing or tiring him out. That’s changed since DynaVox technology entered the picture. Now they know by words he speaks through the device that his sense of humor and inner vitality remain strong.
“It’s wonderful because it keeps the conversation going,” Sue Hoelzer said. “People who haven’t seen him in a long time can come up and talk.” And, “He doesn’t have that fear that he’s not going to be able to ask for what he needs.”
Lines of communication among those who care about Dan also remain crystal clear. Under the name Team Sargent, they’ve rallied to his support and to promote ALS awareness by hosting events honoring Dan’s love of the outdoors, such as fishing and golf tournaments, on his behalf. Dan’s brother Tim, an accountant, lends his financial expertise. Another brother, Rick, and the Hoelzers, help organize the activities. To date, Team Sargent, http://www.dannysargent.com, has raised close to $200,000 to help Dan’s family make their home wheelchair-accessible and with other ALS-related costs, said Mary Sargent, a dental hygienist who teaches in the dental hygiene program at Palm Beach State College.
Even more important, she notes, are other invaluable ways that family pitches in. The Hoelzers help with cooking and household chores, Tim accompanies Dan to medical appointments. Rick takes the lead in carrying on an old family tradition by hosting a cookout almost every Sunday.
“We’re lucky to have everyone living here in West Palm Beach and we enjoy getting together,” Mary Sargent said. “Family has always been important to the Sargents and probably even more so now.”