Living Independently with ALS: One Man's Story

Despite diagnosis with a terminal illness, Ken Jones maintains independence, positivity, and passion for the search for a cure for ALS.

MESA, ARIZ. - Ken Jones sits in an electric wheelchair in his living room, wearing an emergency call button on his neck and a smile on his face.

“I’ve lived a full life.” the 77-year-old man said. “I’ve done a lot of stuff.”

Jones served in the navy for four years—performing duties ranging from surgeries to accounting. He also spent three years in the Peace Corps in Malawi, Africa. While there, he worked with kids, teaching accounting and talking about the Peace Corps.

“I used to be involved in a lot of volunteer stuff,” Jones said. “But nothing now.”

In August 2003, Jones was diagnosed with primary lateral sclerosis, a predecessor to amyotrophic lateral sclerosis. Typically, a diagnosis of this rare neurodegenerative disease— better known as ALS or Lou Gehrig’s disease— means a life expectancy of about three years, according to Dr. Paul Gordon, the Associate Medical Director of Columbia University’s ALS Research Center.

But Jones has beaten the odds, living much longer.

Eight years after the diagnosis, the disease has worn away at his brain and spinal cord, causing his muscles to deteriorate and weaken. Like other ALS patients, he has trouble speaking, swallowing and coughing. But many ALS patients have to move into an assisted living community.

Jones, however, prefers to take care of himself.

“I’m very independent,” he said. “An assisted living place would require me to pay for meals, and of course I can’t swallow.”

Jones lives in a senior community in East Mesa. At his apartment, he handles many basic needs alone and lives an active life. He takes part in community activities, greeting each of his neighbors as he moves down the hall.  He feeds himself, using a feeding tube to ingest canned food. He dresses himself in the morning, even though the process can take as much as an hour.

And he uses the computer to pay bills, send e-mails and play online card games. “Playing bridge is my favorite activity,” he said, mentioning membership in an online bridge community.

And unlike many other ALS patients, Jones still drives. Despite a lack of muscle control that makes it hard for him even to pick up a piece of paper, Jones insists on maintaining that facet of his life.

He owns a 2009 Chrysler Town and Country Van, outfitted with automatic doors, a wheelchair ramp and a “low-effort” braking and steering system. The system consists of handles and levers that allow him to control the brake pedal, gas pedal and steering wheel with minimal exertion.

“He only drives short distances,” said Kim Hughes, director of patient and family services at Arizona’s Chapter of the ALS Association. “But he likes to be able to drive on his own.”

Hughes, who has worked closely with Jones, points out that the Veteran’s Association gave him his van and his $40,000 electric wheelchair. When the VA announced it would provide support for veterans affected by ALS, Jones was one of the first in the state to take action.

He uses the van to drive himself to the doctors’ office or to a nearby CVS Pharmacy where he picks up medication. “I take a lot of pills,” he said, motioning to the stack of pill organizers and bottles on his kitchen counter.

According to the Mayo Clinic, ALS patients often require extensive medication to treat muscle cramps, constipation, fatigue, excessive salivation, excessive phlegm, pain, and depression.

Since he has lost use of his throat muscles, Jones gets nutrition through a feeding tube in his stomach. At first, the process was painful and unpleasant.

“They shoved it in there,” he said, motioning to his stomach. But Jones’ body has become accustomed to the device, and he’s learned to use it independently. He hooks the tube up and pours the food, consuming six cans of nutritionally supplemented food product each day.

Difficulty swallowing was one of the first signs something was wrong, Jones said. As the disease progressed, he began to experience further difficulties, like trouble coughing and speaking as his throat and vocal muscles began to deteriorate.

Since he can’t swallow, Jones has a special machine to clear saliva from his mouth. It comes to life with a roar as he flips it on to demonstrate. He places a pencil-sized tube in his mouth and moves it around, until the excess saliva has been cleared.

Next, Jones shows a machine he uses to communicate when his voice box is too weak. The machine looks like a small keyboard, but reads whatever Jones has typed out loud.

To evacuate mucus from his lungs, Jones has yet another machine.  “It sucks it right out of there,” he said about the mucus-clearing machine. “But it pulls on my face hard.” He demonstrates what his face looks like when using the machine, pulling his cheeks far apart and then laughing.

Jones’ positivity makes quite an impression. Dorian Pulliam, a driver for the Arizona Spinal Cord Injury Association, often takes Jones to appointments in Phoenix.

“Ken’s just an upbeat guy,” Pulliam said. “He’s kept himself well adjusted to his injury. There’s no depression around him.”

Jones participates in a monthly ALS support group, where he gains support from others going through the same thing.

“It’s nice to be with people who understand,” Jones said. “You don’t have to explain anything.”
Hughes agrees, but adds that it’s been tough, as some key members of the group have passed away recently.

However, Jones keeps his focus on effecting change. He stresses the importance of continued ALS research and has donated his body to science after he dies.

Furthermore, he’s passionate about helping current victims cope. He had a special recliner chair from the ALS Association, but after he received funding from the VA, he returned it and bought his own.

“He wanted it to be available to other people,” Hughes said. “He insisted.”

Ken continues not only to maintain independence, but to fight for ALS research and relief in every way he can.

“At the end of your story, tell the people they need to give more money to fight ALS,” he said, glancing at Hughes with a mischievous grin. She laughs and reassures him raising awareness about an upcoming ALS walk will be enough. But he looks unconvinced.

“Tell them,” he said.