‘It’s what I live for’

About ALS, Lou Gehrig’s Disease

• A progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, the degeneration of the motor neurons eventually leads to death.

• The life expectancy of an ALS patient averages about two to five years from the time of diagnosis, but the disease is variable and many people live with quality for five years and more. More than half of all patients live more than three years after diagnosis.

• Most commonly strikes people between the ages of 40 and 70, with an average age of 55 at the time of diagnosis. It is 20 percent more common in men than women.

• Approximately 5,600 people are diagnosed with ALS each year in this country.

Symptoms can include

• Muscle weakness in hands, arms, legs or the muscles of speech, swallowing or breathing.

• Twitching and cramping of muscles, especially those in the hands and feet.

• Impairment of the use of arms and legs

• “Thick speech” and difficulty in projecting the voice

• In more advanced stages, shortness of breath, difficulty in breathing and swallowing.

It was the one time Marty Vandenbrock wanted to be wrong.

The then-55-year-old was in St. Louis watching his son Matt and the Alter High School boys volleyball team compete in a tournament when he first noticed he couldn’t lift his right foot.

“I didn’t tell anyone,” Marty said. “I was dying to get home and get on the Internet to figure out what was going on.”

Marty had his suspicions, and the more he researched, the scarier it became.

“Best-case scenario was MS, worst case it was ALS,” he said.

The father of two didn’t share his worries — not yet. His daughter Madelynn would soon be graduating from Alter and Matt was playing for a state volleyball title. Once the Knights had secured their second consecutive state crown, Marty shared his health concerns with his family.

There were countless tests and doctor’s appointments before his worst-case scenario became a reality — amyotrophic lateral sclerosis, Lou Gehrig’s Disease.

The onset of this progressive neurodegenerative disease is often marked by muscle weakness or stiffness. Progression of weakness, wasting and paralysis of the muscles of the limbs and trunk as well as those that control vital functions such as speech, swallowing and, later, breathing generally follows.

“The first 10 minutes, after he told me, I was in shock,” Matt said of his dad’s diagnosis. “Then it really hit me.”

Finding focus

A year later, Matt, 16, is still struggling to come to terms with his dad’s illness. Volleyball has been great therapy for the sophomore outside hitter who leads the Knights with 183 kills and was recently named to both the Greater Catholic League North and West Region first teams.

“It’s great stress relief,” Matt said. “Going up and hitting something feels good.”

Matt has translated fear and frustration into focus.

“He has always been a hard-working kid but I think it’s made him focus even more,” Alter coach Craig Erford said. “He is more determined than ever to succeed.”

If he ever needs an extra ounce of motivation, all he needs is a quick glance at his dad — now confined to a wheelchair — watching courtside. Dad never misses a match.

“It means a lot to me to have him here,” Matt said. “He doesn’t get out of the house much any more.”

It means even more to Marty.

“It’s a vacation to come and watch him play,” he said. “It’s what I live for.”

Finding strength

For Marty, living with ALS has meant coming to terms with his own mortality. The life expectancy of an ALS patient averages about two to five years from the time of diagnosis. Marty’s physical decline has been dramatic.

“Fourteen months ago, I could hang from that rim,” he said, pointing to the basketball hoop in the Alter gym. “My nerves are shorting out. I feel like I’m losing more control every day.”

There is too little time and too much still to experience.

“I want him to see me win another state championship and graduate,” Matt said.

It seems like a lifetime ago that Marty was coaching his son in basketball, baseball and soccer. But the principles he instilled in his son will last a lifetime.

“He was always pushing me harder than anyone else on the team,” Matt said.

It might have been just the push the Knights’ soft-spoken team captain needed.

“He has such an incredible work ethic,” Erford said. “He leads by example through his determination and his dedication.”

That determination comes from dad.

“It’s so hard seeing him struggle to do things but it definitely provides me with motivation,” Matt said. “I want to keep going for him.”