The scientific name is amyotrophic lateral sclerosis, or ALS for short. In the United States, most people know it as Lou Gehrig’s disease. And more than 70 years after the beloved New York Yankee first baseman died from this little understood neuro-muscular condition that gradually wipes out the body’s muscle systems while leaving the mind intact, there is no known cause, no treatment and no cure.
What is known about ALS is that it is progressive, debilitating and always fatal, with an average survival rate of three to five years. At any given time, an estimated 30,000 Americans have ALS. Every year an estimated 5,600 Americans receive the diagnosis. And last year, Phil Timp, a well-known marketing executive and motivational speaker from Bristol, became one of them.
A marathon runner and tri-athlete, Timp got his first clue that something wasn’t as it should be last spring. While running, he experienced an awkwardness in his right leg he describes as a sort of flapping. When he had trouble keeping up with his sister while out for a power walk, Timp realized he needed to see a doctor.
On the advice of a friend and physician, he saw a nuero-muscular specialist in June and underwent a couple of nerve conduction tests. While there is no test that definitively identifies ALS and the diagnosis is made only with the progression of symptoms over time, Timp said the tests revealed involuntary contractions in his leg muscles known as fasciculations. “It’s a word I have come to hate,” he said. “It’s the nerves and the muscles disconnecting from each other. When that happens, the muscle works on its own or twitches. And it continues to do that until the muscle dies.”
One year later, the 40,000-mile lifetime runner and six-time marathoner is walking with a cane and a brace on his lower right leg, and using a motorized chair to get around at work. “I have twitches everywhere. My muscles are working on their own and eventually they are going to die,” he said. “What I’m facing is paralysis.
But this is not the first battle with a catastrophic condition Timp and his family have waged and he feels they come to the fight well prepared. It was his 30-year-old daughter Beth’s battle with Rett’s Syndrome, a genetic disorder that robs girls of their ability to walk and talk at a very young age, that spurred him to be the nationally recognized speaker he has become, that led his wife to a career in special education, and that caused their entire family to become advocates for others with rare and debilitating conditions.
A spiritual person, Timp said he considers his ALS another part of his contract with God and has incorporated into the messages he delivers at speaking engagements across the country.
“After 30 years of all Beth’s struggles, my wife and I thought we were finally on the down hill. Then this thing. What it’s caused us to do is realize that as hard as we thought we had lived, we were only living life at 80 percent and we needed to ratchet that up to 110 percent.
“The essence of this story is life has limits and we can not live it like it’s a dress rehearsal. It’s Act I, Scene I every morning when we get up and we are living it out every day. I’m on a time line for life and I can’t think about next year. I’m thinking about today and what positive impact I can have in other peoples’ lives today. I learned this from Beth and her life has not been easy.”
The Beth Foundation the Timp family established to help other families with children with rare disorders is now forwarding a portion of its funding to the Tennessee Chapter of the ALS Association to help fund research and to provide care for ALS patients, and to the Center for ALS at Emory University in Atlanta.
With help from The Corporate Image, the Bristol Marketing Firm where Timp serves as senior vice-president, the Timp family and their friends have established Team Timp to further help the ALS Association and have lined up a busy fundraising calendar.
Wednesday evening from 5:30 p.m. to 8, they will host a celebrity bar tending benefit at Machiavelli’s Restaurant on 5th Street in Bristol. On Saturday morning, they will stage the Bill Gatton Freedom Memorial 5K Road Race for the ALS Association, beginning at 8 a.m. at the Bristol Train Station. On June 18, they’re putting on the Bristol Country Club Golf Tournament to Fight Lou Gehrig’s Disease, beginning at 9 a.m. On Aug. 3 and 4, they will take their ALS battle to the Tri-Cities Golf Course for a two-day Team Timp ALS fundraiser that will include an evening of live music, food and a silent auction to be followed by a benefit golf tournament the following afternoon. And on Oct. 13, they will be a part of the annual Tri-Cities Walk To Defeat ALS at Warrior’s Path State Park that last year raised $101,000 for the ALS Association.
Timp said his condition is progressing slowly enough to allow him to contribute largely to the search for a cure to ALS. “The silver lining of all this is allowing God to intervene in every waking moment of my life so I don’t dissolve in desperation and despair and I’m not doing that. This is where we are and these are the challenges, so let’s make the most of it. Part of the gift God has handed me is my years in communication and marketing, so let’s use it.”
More information about Team Timp’s efforts, including details on each of its fundraising events, can be found online at www.teamtimp.org. More information about the ALS Association and its work for a cure and for patient care is available at alstn.org.