Every year, 6,000 people in the United States are told they have a rare but devastating disease. Amyotrophic lateral sclerosis, usually called ALS, is mysterious and affects a person’s ability to move their muscles. Eventually, the disease renders patients unable to walk, move, speak, eat and breathe.
There is no cure for ALS and once diagnosed, it progresses rapidly affecting every aspect of the patient’s life. To meet the needs of the ALS patients and their families, a
comprehensive approach that merges research for a cure and specialized clinical care is critical. That’s why Jefferson created the Jefferson Weinberg ALS Center, a clinical and research integrated program, which consists of three research labs and a multidisciplinary treatment clinic. In the clinic, Jefferson staff, clinicians and researchers work alongside the ALS Association, Greater Philadelphia Chapter to provide individualized care to our patients.
The second floor of the Clinical Office Building is always brimming with activity, but it seems especially busy on Friday mornings. This is because the dozen medical providers who make up the clinic are getting ready to see patients for the day.
Kate Monahan, the Center’s program manager, is at the forefront of coordinating the day’s visits. “My background is in hospitality management,” she explains. “My philosophy is to treat our patients the same way we treated guests in a five star hotel. When I first started, I was surprised to see how happy patients were to come to clinic. I think that’s because we keep a positive, upbeat and innovative atmosphere around here. Our providers try to make sure our patients are actively living life while they have ALS and it shows in the whole atmosphere of the clinic.”
The day’s visits are already underway, led by neurologist Goran Rakocevic, M.D., the Clinical Director. But the clinic is multidisciplinary.
One of these disciplines is palliative care, provided by Susan Parks, M.D., of Jefferson Family Medicine. Parks helps the patients make the most informed decisions about their journey with ALS and will be discussing end-of-life decision making. “Palliative care is about any serious illness, but really, it should have a more prominent role in our healthcare culture, particularly primary care” she says. Dr. Parks is boarded in family medicine, geriatrics and palliative care. This gives her a unique perspective on how palliative care can be layered into primary care earlier in the course of illness.
“The reason I went into medicine is to provide patient-centered care and that’s what palliative care is about. ALS certainly presents a unique set of issues, especially the functional challenges. But, really, the approach to the patient is always the same in palliative care: find out what kind of care the patient and their family want and make sure that’s the care they’re getting.”
At noon, Gabriella Charles, MS, OTL/R, prepares to enter a patient’s room. “Occupational therapy helps patients maximize quality of life and independence through purposeful activities,” she explains. When this patient meets with Gabriella, he will learn how to use tools to help him performs tasks of everyday living, like eating, using the bathroom or getting dressed.
While occupational therapists are no strangers to sophisticated technology, many of their tools are simpler than you may expect. “For example,” she explains, “if someone is having trouble picking up a cup, giving them a very long straw may help. It seems like a simple thing, but it makes life a lot easier. That straw may be the difference between drinking water yourself and asking someone for help.”
As the afternoon clinic winds down, Karthik Krishnamurthy, Ph.D., is still hard at work in the Center’s lab across the street. While the ALS clinic is a new service at Jefferson,
ALS research is not. Thanks to the generosity of Vickie and Jack Farber, three ALS-exclusive research labs have been producing important research since 2006. “It is very hard to treat a disease when you don’t know what causes it,” explains Davide Trotti, Ph.D., Professor of Neuroscience and the Center’s research director. “That’s why we need to expand our research and continue in our focused and systematic approach to identify the pathogenic changes that trigger ALS and useful biomarkers for the disease”.
When Krishnamurthy entered his biophysics doctoral program, he knew he wanted to focus on neuroscience. His focus quickly narrowed to neurodegenerative diseases. “Neurodegenerative diseases pose a huge burden to people around the world,” he says in front of the powerful microscope he uses to study cell cultures.
“I had some contact with ALS patients during my Ph.D. training in India. Many of these patients were never even formally diagnosed, genetic testing wasn’t available and there wasn’t a lot of support. With the advent of new optical technologies and cell engineering, I’m hopeful that we will identify some useful targets in the next few years that will open the door to new treatment options.”
By the late afternoon, the patients usually have returned home, but the day isn’t over for the clinicians. Instead, they head to a conference room for wrap up. While they’ve talked among themselves all day, this meeting provides a formal venue for everyone to share their impressions of the patients.
Jennifer Klapper, MSN, RN, BC-CNS a psychiatric clinical nurse specialist employed by the ALS Association of Greater Philadelphia, explains its purpose: “Each team has its own magic alchemy, so every wrap up is a little different. But the purpose of wrap up is to make sure no one is missing anything. As we share what we learned about the patient, we gradually build their plan of care.”
Perhaps Jennifer sums up what it is like to work in the field of ALS the best. “If you’re looking for an easy field,” she says as she smiles, “this isn’t it. But it’s a true privilege for families to invite us in to help during this most profound time in their lives.”