Ride For Life: Living with ALS for 33 years

As Bob Phillips and his wife, Frankie, walked along the shore of Myrtle Beach in the summer of 1969, he noticed his right foot tended to stick in the sand.

It was the first sign anything was wrong.

The 6-foot-3-inch, 220-pound Navy veteran and his wife appeared to be living the ideal life. Married in 1960, they had two children, Lisa and Robert Mark, and Bob’s three children from a previous marriage, Ted, Pat and Debra. They enjoyed traveling. Bob worked for Daniels Construction Co. and sang bass in a local gospel group. A former boxer in the Navy, he also enjoyed sports. Frankie worked as a weaver at Springs Industries’ Lancaster Plant.

Then the problem that began with the right foot gradually affected his left foot and leg, then the hands and arms, followed by his loss of speech.

By November 1969, Bob was totally disabled. He saw numerous doctors before spending most of 1971 in the Veterans Administration Hospital in Charleston, where doctors, working with neurologists from the Medical University of South Carolina, diagnosed his illness as amyotrophic lateral sclerosis.

Patients with ALS usually have a life expectancy of two to five years after diagnosis. Bob has survived 33 years with the motor-neuron disease. The rare disease, with no known cause nor cure, kills brain and spinal cord cells that control muscle movement, resulting in gradual muscle wasting and total paralysis. ALS affects as many as 30,000 Americans. More popularly known as Lou Gehrig’s disease, it usually strikes between the ages of 40 and 70. Bob was 40 when diagnosed with ALS.

Riding waves of doubt

Medical experts tend to doubt Bob’s diagnosis, until they learn his story. In the beginning, he, too, doubted and hoped his condition had been misdiagnosed. Bob and Frankie made two trips to the California Pacific Medical Center in San Francisco, where the late Dr. Forbes Norris, a pioneer in the comprehensive management of ALS, confirmed his diagnosis. The center is now named the Forbes Norris MDA/ALS Research Center.

Ten years after Bob was diagnosed with the degenerative neuromuscular disease, Frankie contacted another leading neurologist, Dr. Stanley H. Appel, professor and chairman of the department of neurology and director of the MDA/ALS Research Center, Baylor College of Medicine.

“Dr. Appel doubted the ALS diagnosis due to Bob’s longevity,” Frankie said. “But he agreed to see him.”

Bob spent a week at the Texas clinic undergoing extensive neurological testing. There was no more denial. Before Bob returned home, Appel telephoned Frankie and confirmed the diagnosis.

That was 22 years ago. Since then, Bob has traveled to several clinics and participated in many research programs, including a neuro pace implant, a device for treatment of neurological disorders by responsive brain stimulation. In Boca Raton, Fla., he participated in a six-week program of injections of cobra snake venom, designed to build immunity.

“Before leaving Florida, all patients were given an injection believed to protect the respiratory system from being involved in the disease progression,” Frankie said. “Some were given a placebo and the patients never knew which they received.”

There was a reason Bob participated in the different experiments.

“I tried everything I could find hoping for a cure,” Bob said. “I went through the pain of all the tests, hospital expense, doctors, etc. – not for myself, but for my kids and others.”

Frankie said they have asked a lot of questions and done a lot of searching over the years. She said they got a lot of “we don’t knows” and “maybes.”

Condition today

Bob has been wheelchair-bound since 1984 and he needs assistance with everything except feeding and brushing his teeth. He finds not being able to talk the most difficult aspect of the disease. The index finger on his right hand does the talking with the use of a DECtalk voice communications device. He says there is a reason behind the smile he has for everyone.

“I’m amazed that I’m still alive,” he said. “My death sentence was given years ago.”

Bob attends GoldenCare Adult Day Center three days each week, where one of his nurses said his will to live is beyond anything she has ever seen.

“He’s amazing,” said Linda Hefley, a registered nurse. “He told me one reason he wanted to keep living is that by studying him, he could help other people.”

Hefley said Bob feeds himself from a food-divider plate and drinks liquids, preferably tea or juice, through a straw.

Frankie said Bob enjoys eating, but each meal presents a challenge.

“Usually he gets tired before he is able to finish the meal,” she said.

Frankie cared for Bob for many years, taking him to medical appointments and on other outings. For the last five years, a home health aide has visited daily and takes care of Bob’s personal hygiene, shaving and bathing.

Frankie said the only prescribed medication Bob takes is for osteoporosis and a couple of aspirin each evening. He sees a general practitioner for non- ALS-related problems.

“We continue to go it on our own as far as doctors, tests and hospitals are concerned,” she said.

Finding joy in living

Bob continues to live each day, one day at a time, doing things that he enjoys.

“He still loves gospel music,” Frankie said. “He watches a lot of it on television and he also likes sports – all sports.”

He enjoys reading The Lancaster News, family gatherings, seeing old friends and welcoming visitors. Their church, Zion United Methodist, holds quarterly classes in the Phillips’ home.

One of his greatest joys is going to social functions and getting outside.

“He’s really into going places,” Frankie said. “He’ll go anywhere.”

Two upcoming events will benefit ALS and Bob says he will be there.

“I’m glad to see that after so many years, ALS information is being provided on the local scene,” Bob said.

He is looking forward to Saturday’s gospel singing fund-raiser to benefit ALS.

Later, on March 27, the Jim “Catfish” Hunter Chapter and the Lancaster ALS Support Group are sponsoring Lancaster’s first Walk to D’Feet ALS.

Proceeds from both events will benefit the chapter’s efforts in providing support to patients and families in the Carolinas.

Jerry Dawson, executive director of the chapter, said its mission is to find a cure for ALS and to improve living with ALS.

“We are committed to making sure every person living with ALS in the Carolinas has the same access to quality medical care, regardless of his or her personal situation,” he said.

The chapter adds to patients’ quality of life by providing a variety of programs, free medical equipment, reimbursement for in-home medical care, transportation assistance and help in covering the cost of communication devices.

“Bob Phillips is quite a remarkable man,” Dawson said. “He has shown everyone that a diagnosis of ALS does not mean giving up.”