The nurses here say that working at the clinic can sometimes be like hosting a party. The patients bring family and friends, and the waiting room swells with chatter. Carlos Corea teases a fellow patient about her motorized scooter.
“I don’t really know her. It’s just every time I see her in the little scooter, I always make that ‘beep-beep-beep-beep’ sound like she’s backing up like a big truck. So I kind of like make her laugh.”
Little moments like that are encouraged at the monthly clinic. But that’s not why Dr. Stanley Appel started it more than 20 years ago. The neurologist was seeking a more efficient way for his patients to see, in just one day, all the specialists they need to see. Like respiratory therapist Mary Barnes. She’s testing lung function in John Ferguson.
Ferguson is 62 and a chemical engineer. He and his wife drive 360 miles to the clinic from their home in Louisiana. They do it because they believe the team-based approach will buy him more time.
“It’s a very supportive approach. And in the small community I’m in I only know one other guy that has ALS. So it’s helpful to see others in the same boat.”
Between appointments, the patients and their families eat lunch together and swap strategies and emails. Spouses form carpools or schedule coffee dates for later. Barbara Adcock of Sugarland was diagnosed last July:
“It’s really encouraging to see people at different levels. You get gizmos from other persons, you know like ‘Oh, that’s a neat gadget, where did you get that?’ or ‘I hadn’t thought of that.’ You feel a camaraderie ’cause you’re all on the same journey you’re just at different stages in the journey.”
But there is a challenge that comes with the openness. Newer patients can’t help noticing those whose disease has progressed, who are now in wheelchairs, or who struggle to form words or swallow.
Corea can still walk, and he said the visits were hard at first:
“I kind of didn’t like coming here, you know ’cause you see the different progress that everybody has, and you think about it, you know, ‘Am I going to get to that stage?’ or ‘Is that going to happen to me?’ But I try not to think that way, you know?”
Jeanine Hodges, a patient from the Woodlands, does take note when familiar faces re-appear with new disabilities, or stop coming altogether.
“I don’t know, I kind of have to look the other way and not think about the future and I just live for the present.”
But Hodges also found a confidant six months ago, after randomly sitting down next to another women with ALS. The two women became close and talk often on the phone.
“She lives way across town, so it’s not like we can ever get together, but we do meet at the clinic and compare stories. And, her and I, we just can relate to each other, because we are — you know, we’ve got this disease that…so.”
Ten years ago, the median life expectancy for ALS was a little over three years. Now it’s over four. Dr. Appel credits the inter-disciplinary approach for staving off the infections and falls and nutritional problems that can hasten death. But he also suspects the clinic, which acts as a de facto support group, may be helping his patients stay calmer and more hopeful. And that means less stress on their immune systems.
“So, ALS. When people say ‘Is it curable?’We say no.’ But life isn’t curable; heart attacks aren’t curable; lots of things in this world that we all deal with aren’t curable. But ALS is a treatable disease, by the fact that the patients are living longer with more quality, we can enhance their sense of hope, it’s as treatable as a lot of other conditions.”
From the KUHF Health, Science and Technology Desk, I’m Carrie Feibel.
For more information:
Methodist Hospital’s ALS Clinic: www.methodisthealth.com/nineurology.cfm?id=34923
Information on ALS from the Muscular Dystrophy Association: www.als-mda.org/disease/als.html