A diagnosis of ALS, also known as Lou Gehrig’s disease, marks the beginning of one of the most heart-breaking journeys in neurological disease. The path is uniquely difficult for each patient, and the ultimate destination remains, today, immutable. Specialists at the Neuromuscular Disorders Center at the University of Cincinnati Neuroscience Institute are working to maximize quality of life for this small population of patients and their families – and creating a foundation for future research studies — with a new comprehensive ALS Clinic.

The UC Health ALS Clinic, created with generous support from the Barbara V. Peck and Justin Friedman Fund for research in ALS, and UC’s Muscular Dystrophy Association grant, takes place one day each month at the Daniel Drake Center for Post-Acute Care. A patient with ALS typically attends the clinic once every three months for a period of two to three hours. During the visit, the patient and his or her family are situated in a single room, where they are visited by a physician, a social worker and a series of therapists. The goal is to care for all of the patient’s physical, emotional and logistical needs in a single office visit.

About ALS

ALS, or amyotrophic lateral sclerosis, is a progressive neuromuscular disorder involving the loss of nerve cells (neurons) that control the voluntary muscles in the arms, legs and face. These motor neurons are located in the brain, brain stem and spinal cord. As the motor neurons die, muscles waste away. There is no known cure.

ALS strikes about 5,000 Americans each year, and 20,000 to 30,000 are living with the disease, according to the National Institute of Neurological Disorders and Stroke (NINDS). The ALS Association’s Central and Southern Ohio Chapter serves about 200 patients from 65 counties at any given time. ALS is more common in men than women and is typically diagnosed in patients between 40 and 60 years of age. About 5 to 10 percent of cases are hereditary. A definite cause of the disease has not been determined.

“The ALS Clinic is provides an important service for our patients and families who face the challenge of ALS,” says Robert Neel, MD, left, a neuromuscular disorders specialist and the clinic’s director. “It allows us to provide comprehensive care, therapy and counseling for our families.”

“What makes this a special population is the severity of the disease and how rapidly it strikes,” says Paige Thomas, PT-MSR, NCS, MHA, Manager, Outpatient Therapeutic Services. “Nevertheless, there is still so much we can do for our patients to maintain their strength, function and quality of life.”

A framework for research

The ALS Clinic, which began in February 2013, is also establishing a framework for clinical trials, which will be supported by the Peck-Friedman Fund. The UC Neuroscience Institute’s standing as a NINDS-funded Network for Excellence in Neuroscience Clinical Trials (NEXT) means that the ALS Clinic is poised to participate in future national clinical trials of ALS therapies. Potential studies, now pending, would not be possible without the clinic, Dr. Neel says.

Patients at the ALS Clinic typically begin with a visit from Dr. Neel, who assesses their physical and mental condition as well as topics ranging from home health support, caregiver support and hospice care.

“I also monitor depression, if they are having those issues,” Dr. Neel says. “Patients with ALS experience a pseudo bulbar affect. Their emotional brakes are off, and they cry when they don’t need to and laugh when they don’t need to. That’s one of the things we deal with. There are medications that can help. It is liberating for them to understand this; if someone blames them for it, they need to say, ‘It’s part of my disease. You wouldn’t blame me for my arm going weak.’ ”

Learn more: UC Joins Northeast ALS Research Consortium >

Complete care with multiple therapists

During a patient’s typical visit:

A respiratory therapist performs pulmonary function tests, which help Dr. Neel gauge where the patient is in the course of the disease.

An occupational therapist works with patients on functional tasks that most of us take for granted — activities of daily living such as shaving, dressing, and using the phone or keyboard. The therapist also can administer driving tests and assess a patient’s capabilities in a workshop kitchen.

A physical therapist focuses on patients’ gross motor strength, their walking and their balance. The physical therapist can provide braces, walkers, wheelchairs and other medical equipment to help them maintain their independence.

A speech therapist assists patients with issues related to speech, eating, nutrition and swallowing. When patients reach an advanced stage of disease, the muscles necessary to formulate sounds and to swallow are no longer strong enough to do so. At this point patients are sometimes provided with communication devices.

A social worker assists patients and families with social issues, including home health care, preparing a power of attorney, and inevitable end-of-life decisions. The social worker also oversees a “loan closet,” stocked with costly, lightly used equipment that families have given back after their loved one has passed away. The equipment, which includes motorized wheelchairs, is a blessing for patients who are underinsured or not yet on Medicare.