Lou Gehrig’s disease slowly taking man’s life, happiness
January 30,2005
Dulcinea Cuellar
The Monitor
© 2005 The Monitor and Freedom
Interactive Newspapers of Texas, Inc.

Martin Silva inhales a long drag from his Marlboro Red cigarette, lets his breath out gracefully and taps the ashes to the ground, where the wind quietly blows them away.

The glowing ember of the cigarette tip glows brighter as he inhales; his daughter and wife watch disapprovingly.

Silva’s faded blue polo shirt drapes over his broad shoulders, outlining his gaunt frame. The man leans on his wooden cane, wobbling before he finds his balance — one hand on his cane, the other on his cigarette.

"I’m dying," he says, putting the cigarette to his lips for a second drag, "I’m going to do what makes me happy."

Silva was diagnosed with Amyotrophic Lateral Sclerosis, or ALS, in 2001. The disease is often referred to as Lou Gehrig’s disease, named after the Hall of Fame baseball player who was diagnosed with ALS in 1939 and died of the disease in 1941.

It’s estimated that 30,000 Americans have the disease, which atrophies the muscles and nerves until they can no longer function.

There’s no known cause of ALS and the most prescribed medication, Rilutek, only prolongs life.

Silva is on an experimental drug, INV-Creatinel. The once-a-day tablet is just one of the nearly 10 tablets he takes a day to sustain his health.

"I take most of them in the morning," the Edinburg resident said, flicking the cigarette and sitting down on a plastic lawn chair. "With a little water and some breakfast."

Many of his medications are for his emotional well being.

"This one is for pain," he said, balancing three large orange pill bottles in his left hand while searching for more medication with his right, "This one is for my heart, this one is for my anxiety …"

Since his diagnosis, Silva’s attitude has changed from happy to moody.

While he still smiles, the wide grin he used to share is waning.

More often, he sits alone in his bedroom watching TV or lies awake in the middle of the night.

He has a hard time going to sleep, said his wife, Ana.

"I get these nightmares," he said. "I’m dreaming of my brother, he’s reaching out for me."

His younger brother, Roberto, died of ALS in 1995.

"I’m afraid to reach back," Silva said, his eyes downcast.

Silva’s doctor, Carlayne Jackson, said her patient suffers from familial ALS, or genetic ALS.

Though it’s rare for the disease to be passed on from one generation to the next, it does happen. About 90 percent of the people who get ALS get it are diagnosed with the sporadic form of the disease, much like any other disease without a family history or bloodline.

In Silva’s case, it’s believed his father died from the disease, his brother is known to have died from the disease and now he has it, she said.

He has a 50/50 chance of passing it along to his family, which includes seven children, 21 grandchildren and two great-grandchildren.

One grandchild, two-year-old Jay, sleeps with the couple at night. One recent morning, Jay snuggled next to his grandpa while he breathed, quietly hushed by Silva’s C-PAC machine, needed for the man’s weak lungs.

"He comes in the middle of the night," Ana whispered, not wanting to wake up her husband, "and he calls him ‘Dad.’ "

Perhaps the biggest significance in the family is the bonding of the family’s nucleus.

The family visits, now. They talk about death and they talk about ALS.

Silva’s only son, Martin Silva III, said he’s not worried about getting the disease.

"No, it’s my son and my little girl," he’s concerned about, he said. "I see what he’s going through and I don’t wish it on anybody else."

The family didn’t think anything was wrong with Silva when he started complaining of leg cramps three years ago.

Silva’s son believed the cramping was due to his father’s lifestyle — nights out dancing with Ana finally caught up with the old man, he thought.

Instead, it was a life-ending prognosis.

Silva didn’t have any family members with him when a local neurologist gave him his diagnosis.

"She gave me a hug and then told me I was going to die," he said. "She said I had Lou Gehrig’s."

He walked out of the doctor’s office, drove to a liquor store and bought a cheap bottle of whisky.

"And I drove," he said. "I was drinking that bottle and just driving. I didn’t care if they arrested me; I was going to die, anyway."

The diagnosis was an immediate death sentence, he said.

"I wanted to kill myself — to die," Silva said, the pain of the thought apparent on his face. "Do you know what this disease does? Everything goes but my head and eyes."

Medical research proves patients lose some cognitive thinking skills, developing a form of dementia, as they progress into to the last stages of the disease, Jackson said.

"The doctor says we’re going to die," he said, solemnly. "But you gotta start praying. It took my dad, he’s dead, it took my brother and now it has me. But I’m fighting it — I’m not going to let the flag go down."

At times, Silva’s depression becomes unbearable.

"You know I had a couple of rifles," he said. "But I gave them away, because one of these days I will go crazy and shoot myself."

But then he thinks about the good things in his life — his wife, his son and daughters.

"So I get up every morning and take my eight pills in the morning and go for my walk with my Ana," he said. "I take my walker and walk half a mile, then I come home and take two more pills."

He tries not to think about the pain or the end. Instead, he tears up, thinking of his dad.

"He never complained," he said. "I mean it’s hell. He used to fall down, but he got back up again. We just never knew."

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