Photos by Mike Moore | The Journal Gazette Josh Gentry, who has ALS, is shown with his wife, Erin, and children Adalyn, 8, and Jack, 3.
Gentry is able to communicate through a special computer and software that reads his facial expressions and eye movement.
Mike Moore | The Journal Gazette Josh Gentry sits behind his desk wearing special equipment designed for patients with ALS that allows him to communicate with the world around him.
Sunday, June 03, 2018 1:00 am
Living with Lou Gehrig's disease
Blessings outweigh complaints
ASHLEY SLOBODA | The Journal Gazette
Children and young adults who have or had family members battling Lou Gehrig's disease may attend Camp HLC from June 17 to 23 at Flat Rock River YMCA in southeast Indiana.
The program is free. Hope Loves Company, or HLC, is a nonprofit that supports children and young adults with relatives affected by ALS.
For more information, go to www.hopelovescompany.org.
From where Josh Gentry sits in his home office, he can't see the wall featuring photographs of him with his wife and friends.
Reminders of his two young children surround him – photographs and handwritten cards to his left, and a T-shirt with their names and birthdates to his right. In the middle, a poster with the words “daddy's juggernauts” hangs amid others that say “Josh's juggernauts.”
Talking to him, it's easy to get distracted by the decorations, but Gentry's gaze remains trained at a computer screen in the dark room. His voice taken by Lou Gehrig's disease, the 34-year-old can only speak in a synthesized voice, his words crafted with flicks of his eyes over a virtual keyboard, the movements captured by eye-tracking technology.
The Fort Wayne resident's use of technology – particularly smart-home devices that help him control his home despite his immobility – was the focus of a recent story in New York Magazine.
“He threw himself into his home automation,” said his wife, Erin.
Although the magazine article emphasized the technical, Gentry is open about life with ALS, another name for the disease that began affecting him about five years ago. He was diagnosed in February 2014.
A progressive disease, it attacks nerve cells controlling voluntary movement, resulting in gradual loss of muscle movement, speech, swallowing and breathing. The exact causes are unknown, and it has no cure.
Gentry received his diagnosis knowing it was a death sentence, he wrote in an email. “It took me awhile to grieve,” he wrote. “I am still grieving.”
He suggested conducting much of this interview via email due to the time-consuming task of speaking in-person through the artificial voice.
Married since 2007, Gentry and his wife have an 8-year-old daughter, Adalyn, and a 3-year-old son, Jack. Having the disease as a father of young children is especially difficult, he wrote.
On average, people with ALS die within two to five years of their diagnosis; about 20 percent live five years or longer; and up to 10 percent live longer than 10 years, according to the ALS Association.
Gentry knew the stats and quickly did the math upon his diagnosis.
“I would be lucky to see Adalyn turn 9 years old and for Jack to turn 5,” Gentry wrote. “I realized that I would never get to see my grandchildren or I won't be able to walk Addy down the aisle. I worry about the kids getting made fun of because their dad is in a wheelchair.”
Weakness in his hands was Gentry's first clue something was wrong.
Dressing himself became more difficult, and trips and falls became more common, he wrote, noting his initial symptoms began June 2013.
His regular doctor, a physician with decades of experience, dismissed the “incredibly rare” ALS as a possibility, Gentry wrote.
The ALS Association reports more than 6,000 people in the United States are diagnosed with ALS each year, and it is estimated that more than 20,000 Americans have the disease at any given time.
Gentry was referred to a neurologist and waited months to be seen. His first diagnosis was motor neuron disease, meaning his neurons weren't acting as they should, he wrote. He would see more doctors and undergo more tests before learning his condition was consistent with Lou Gehrig's disease.
At that time, Gentry and his wife lived in St. Louis, their nearest relatives a seven-hour drive away. Graduates of Homestead and Northrop high schools, respectively, they returned to Fort Wayne months later.
Gentry, who was a systems engineer at Cisco Systems, didn't know how to prepare for the disease's progression. He dug through human resources and benefits documents to ensure he and his family would be taken care of when he took medical leave. Fortunately, his family would be covered by life insurance he purchased after marrying.
“I didn't think I would need it at the time,” he wrote. “Now I thank God that I did that.”
Living with ALS
Active early in the disease, Gentry traveled to Mardi Gras with his father and a family friend and to Florida once for spring break, he wrote.
But the disease was unforgiving. Losing the use of his arms, hands and fingers was especially difficult, Gentry wrote. Buttoning dress shirts, using a screwdriver and opening doors and water bottles were painful tasks.
A list of what he had to give up grew – his phone, his tablet, holding his nearly 1-year-old son.
“Everything you have to touch, you basically take for granted until you lose the ability to do it for the rest of your life,” Gentry wrote.
Losing the ability to eat was also rough, he wrote, noting he hasn't eaten in more than a year and a half. Before eating became a chore, Gentry tried to eat every flavor of Ben & Jerry's ice cream and said he tasted most of the selling list with help from the company.
In 2015, speaking became more difficult, and Gentry had trouble with aspiration, or food and beverages going down the wrong pipe.
A respiratory issue sent Gentry to the emergency room, and he was faced with a choice – continue to have a tube shoved down his nose to his trachea, which was excruciating, he wrote, or undergo surgery and get a tracheostomy, the construction of an artificial opening through the neck into the trachea. He chose the tracheostomy and hasn't spoken since.
Longtime friend Shawn Kinzer comforted Gentry when his 16-year-old brother died in a 2005 car crash and remains involved in his life, spending time with him and helping with household tasks. “I can still have conversations with Josh,” Kinzer wrote in an email, “just now it takes longer and you ask more direct questions, like 'Yes' or 'No.'”
Kinzer considers Gentry one of the strongest people he knows.
“If I were him, I may not have made it this long,” Kinzer wrote. “But Josh is a fighter and he has never given up doing anything.”
Along with sounds of his children playing, the rhythmic wheeze of Gentry's breathing machine fills his home. With the computer and eye-tracking software that lets him select letters, words and punctuation marks from a digital keyboard, he can call out to his wife when needed. He also can communicate through blinks and smiles. A grin or one blink means yes.
“He blinks a lot for no,” said his wife, a pharmacist at Parkview Health. “I can usually guess what he wants.”
Gentry has a caregiver with him on weekdays, and on weekends his family provides his care. The children help as much as they can, such as retrieving items, his wife said.
She didn't sugarcoat their situation, calling it exhausting physically, mentally and emotionally. The family has a handicap-accessible van, but family outings are difficult, and she tries not to leave her husband home alone for longer than an hour. “It's just hard all the time,” she said.
Adalyn knows her father is very sick and receives support from a school counselor, her mother said. Jack is too young to understand.
Gentry attends their school events and activities, including plays, recitals and competitions. He has good memories with his daughter, including weekend Addy-Daddy dates, he wrote, but his son only knows him “as his dad in a wheelchair and unable to talk.”
Because his computer is his main communication device and connection to the outside world, Gentry spends a lot of time in his office. He keeps it dark because light can interfere with the eye-tracking technology.
He is always trying to learn, particularly about ways to make his home automation system better or more useful, he wrote.
“It keeps me busy and most especially keeps my mind busy,” he wrote. “I don't think I would have made it this long had I not kept my mind busy with projects.”
He sits surrounded by artwork and Father's Day cards from Adalyn; the “Josh's juggernauts” posters from his Walk to Defeat ALS team; an illustration depicting edible parts of a pig, a nod to his enthusiasm for barbecue; and photographs – of him and Kinzer dressed up for a high school event; of him and his wife before marriage, children and “especially before the disease.”
“The things remind me of the good times before the disease,” Gentry wrote. “They remind me of how wonderful my children are. I have a lot of things to complain about, but I have many more blessings to be thankful for.”