ALS clinic serves Central Coast
Close-to-home treatment for those fighting Lou Gehrig’s disease
Lou Gehrig was one of the toughest men ever to play pro baseball. For more than 2,130 consecutive games, he hit homers with fractured fingers and lapped the diamond despite crippling back pain.
But after 15 years in the game, the legendary strength of the “Iron Horse” mysteriously began to fail. What had once been home runs dwindled into mere base hits, and the man who had once walked proud took to dragging his feet as he walked. In 1939, nearly too weak and slow to run the bases, he removed himself from the lineup. He would be dead by 1941, a victim of the terrible
neurological disorder now synonymous with his name.
To doctors, Lou Gehrig’s disease is known as amyotrophic lateral sclerosis, or ALS. For reasons still unknown, nerves in the brain and spinal cord that control the voluntary muscles suddenly start to die. With them, the ability to move, speak, swallow, and, ultimately, to breathe gradually disappears.
“It is an extraordinarily horrific disease because it is one of loss,” says Linda de Mello of the ALS Association’s Greater Bay Area Chapter. The chapter assists patients living from the Oregon border south to San Luis Obispo.
People with ALS eventually become totally paralyzed, reliant on feeding tubes to eat, ventilators to breathe, and special communication devices to speak. The disease moves with frightening speed: just 10 percent of patients are still alive 10 years after diagnosis.
Northern Californians are lucky to have two of the nation’s 20 certified ALSA centers, both located in San Francisco. Now those centers are reaching out to ALS patients on the Central Coast. For the past year, Community Hospital has hosted a satellite ALS clinic at its Ryan Ranch Outpatient Campus in Monterey.
“Monterey is our first satellite clinic because we really had the community support,” de Mello says.
The satellite clinic has been a boon for local patients too ill to make the long trip to the Bay Area, says Julie Scurich, the ALS Association’s Central Coast regional care manager. “A lot of the patients I’d been seeing were no longer able to travel because of their breathing problems and reduced endurance; they basically couldn’t make it to the San Francisco clinics any more. The satellite clinic is great because they are able to see the neurologist and the team again. They’re pretty much all involved in the clinic now.”
The clinic is a collaboration between the ALS Association, AT&T Pebble Beach Charities (the philanthropic arm of the Monterey Peninsula Foundation), and Community Hospital. “We recognized there were people on the Central Coast who very quickly would not be able to access care. We felt we needed to take the care to them,” de Mello says.
At the same time, Community Hospital had been hoping to open a similar set of satellite clinics for
patients unable to access specialist care within their own communities. AT&T Pebble Beach Charities brought Community Hospital and the ALS group together and has funded the cost of bringing the clinic teams to Monterey for the past year. Community Hospital, in turn, consulted the ALS teams while designing the Ryan Ranch clinic space.
The clinic gives patients access to a wide range of ALS experts during a single appointment. “In our medical system, these services are usually so fragmented. Having it all in one clinic saves stress on the patient and family,” says Susan Poor, director of patient and family services for the
ALS Association’s Greater Bay Area Chapter.
The clinic plan is simple. A team from the Forbes Morris ALS Research Center at California Pacific Medical Center or from the ALS Center at the University of California, San Francisco, travels to Ryan Ranch for a day or two every quarter. The visiting team sees up to six patients per day.
During the course of a four-hour appointment, patients consult with a team of medical professionals, all of whom specialize in ALS care. The clinicians test patients’ breathing capacity, monitor their strength and weight, and discuss problems with everyday living such as eating and
swallowing, breathing at night, or taking a shower.
“Just being in clinic for four hours is exhausting. They need their energy to absorb the information and ask questions,” says Scurich.
Although there is no cure for ALS, clinicians can help patients and their caregivers prepare for the next stage of deterioration. Because the disease worsens so rapidly, patients’ needs are constantly changing. The clinics also provide patients access to clinical trials for potential therapies.
“The earlier that clinic staff can begin working with a patient, the better they can build up the person’s resistance or anticipate muscle weakness or recommend nutritional supplements to help the person keep up his or her strength and deal with the disease,” says de Mello. “Later on, you don’t have the same range of options.”
It’s critical for ALS patients to be treated by those familiar with the progression of the disease.
The clinicians also work closely with patients’ regular doctors. As a result, doctors throughout the region are becoming better informed about the disease.
“The reality is, we will never have sufficient specialists or funding to have fully staffed centers throughout the state,” de Mello says. Instead, “regional care provided by community-based care managers and satellite clinics are the future for managing chronic diseases such as Alzheimer’s and Parkinson’s, as well as ALS.”
For more information about the clinic, contact the University of California at San Francisco ALS Patient Care and Research Center at (415) 476-7581 (www.ucsf.edu/brain/als/) or the Forbes Norris MDA/ALS Research Center in San Francisco at (415) 600-3604 (www.cpmc.org/services/als/).