They come for support, treatment and hope for a cure
By BY ERICA RODRIGUEZ - ERODRIGUEZ@VICAD.COM
Jan. 16, 2010 at 5:03 p.m.
Updated March 7, 2010 at 9:08 p.m.
The Crossroads Area ALS/Motor Neuron Disease Support Group meeting
Where: DeTar Hospital Navarro, 506 E. San Antonio St., in the first-floor classroom
When: On the second Monday of every month from 6:30 - 8 p.m.
Open to: The support group is open to people living with amyotrophic lateral sclerosis or other neurological diseases, as well as family and caregivers.
Meetings include: Group discussions on living with motor neuron diseases and speakers from the medical community.
For more information: Contact Bill Hassel at 361-574-8303.
Controlled chaos is the way most patients describe the eighth floor of the Scurlock Tower in the Houston Medical Center.
Doctors hop from patient to patient, visiting some in wheelchairs or some who appear healthy. Some people have come from as far away as Mexico City for care; but every one of them is experiencing the same thing: Each is fighting for life.
Craig Fox, 41, a Victoria man living with amyotrophic lateral sclerosis, is among them. The disease, also known as Lou Gehrig's disease, is a degenerative motor neuron disease. People living with the disease are given three to five years to live. Fox was diagnosed two years ago.
For those living with ALS, places like the muscular dystrophy/ALS clinic, a part of the Methodist Neurological Institute at The Methodist Hospital in Houston, will keep them alive longer.
They come for support, treatment and hope for a cure.
"It's comforting," Fox said sitting with his parents waiting to be seen. "But you also know that you're not alone, and to me it's very comforting."
Like most people living with ALS, Fox and his parents visit the clinic every three months. They made the drive from Victoria to Houston, leaving at 5 a.m. to arrive in time for 8 a.m. appointments.
"These people know what they're doing," Fox said. "You don't get this in Victoria."
The trip wears on Fox and his parents, W.J. and Peggy. Each time Fox arrives, his body has noticeably changed as the disease continues to take its toll.
"Yeah, you'll lose something," Fox said, his head down. "You definitely will feel something that's different."
Three months ago Fox had more control over his neck muscles. Now, he's experiencing muscle spasms and weakness in his neck. He's what they call a slow progressor, and ALS has only affected his upper body. His arms are completely limp and his shoulders slouch under the weight of muscles than no longer work.
The clinic here was the first of its kind in 1991 and serves as a model for others around the world. Every three months 21 specialists from cardiology to neurology convene to visit with patients living with ALS for treatment and to share the latest on research.
"They've tried, I don't want to say everything because the cure's still out there," Fox said. "But they don't leave anything untouched."
Enter Dr. Stanley Appel, medical director of the clinic. With more than 30 years of researching the disease, he is the leading expert on ALS. He's authoritative, oddly eccentric, wears a polka dot tie, and is personable.
He sits with Fox's medical file, a folder thicker than a Bible, and rattles off a list of medicines Fox takes.
Because of new treatments and studies, patients like Fox are living 50 percent longer. Still, the disease is difficult to research because it affects every person differently, Appel said. The only FDA-approved medicine to slow the disease is riluzole, but there is no cure.
"It's almost like having a ringside seat as your body seems to melt away," Appel said. "Weakness in arms, weakness in the legs, melts into weakness in breathing that gets you into trouble."
Appel continues to head the most cutting-edge research on ALS. He and his team are involved in about 12 studies; his latest focuses on improving the way the immune system responds with people who have ALS.
"We're all focusing on ... how to strengthen the immune system and how to turn a toxic immune system into a neuro-protective immune system," he said.
Although there's no immediate cure in sight, he and his team are hopeful for significant advancements in the near future.
"I think conservatively in the next five years there will be another drug on the market FDA-approved for ALS," said Dr. Ericka Simpson, director of the ALS clinical research division at the institute, who works alongside Appel.
Since there is no cure, support and hope can be the most powerful medicine.
"The people who have the most courage, the more positive outlook do better. There is no question about that," Appel said. "It really is the power of positive thinking. That's critically important. I may have ALS, but ALS doesn't have me... that's the kind of outlook we want in our patients."
Fox's support system is his family. His two children, Bailey, 11, and Tanner, 15, help care for him alongside his parents. And though the disease won't stop, Fox remains hopeful.
"As you go through this process and you see your arms totally leave you," Fox said. "So then you look at other things. Well, at least I can walk around, you know? I might not be able to get myself out of my recliner; well, then, I can at least walk around . you be proud to be able to do that, even though you've lost other things."
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