UC Health ALS Clinic Maximizes Quality of Life through Comprehensive Care

Respiratory therapist Ann Compton prepares Thelma, who has ALS,
for a pulmonary screening. Photos by Cindy Starr.

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 Center at the University of Cincinnati Gardner 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.

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, above, 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, at right, Manager of Outpatient Therapeutic Services. “Nevertheless, there is still so much we can do for our patients to maintain their strength, function and quality of life.”

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 Gardner 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.’ ”

Thelma, a retired businesswoman and current resident of Warren County, Ohio, was among the patients at the ALS Clinic on a recent morning. She saw Dr. Neel and as well as several therapists.

Thelma’s respiratory therapist, Ann Compton, performed a pulmonary function test, which helped Dr. Neel gauge where Thelma is in the course of the disease.

An occupational therapist, Connie Buda, tested Thelma’s hand strength. Ms. Buda 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. She also can administer driving tests and assess a patient’s capabilities in a workshop kitchen.

Thelma visited with Ms. Thomas, a physical therapist, who focused on her physical strength. “I work on patients’ gross motor strength, their walking and their balance,” Ms. Thomas says. “I can provide braces, walkers, wheelchairs and other medical equipment to help them maintain their independence.”

A speech therapist is also available to assist 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 speech devices, says Courtney Anness, a speech therapist.

“We look at using an iPad when a person’s speech output is no longer intelligible,” she says. “When they can no longer access it with their hand, we move to a communication device that they can control by using their eyes, or with a head plate and reflective sticker that we put between their eyebrows or on their eyeglasses. If they move their head slightly, they can activate the screen. Each device is specific to the patient; words and phrases are preprogrammed to express basic wants and needs, such as, I love you, can you readjust me in bed, who is coming to visit today?”

Thelma’s final visitor was Yvonne Dressman, LSW, right, a social worker and Care Services Coordinator for the ALS Clinic. Ms. Dressman assists patients and families with social issues, including home health care, preparing a power of attorney, and inevitable end-of-life decisions. Ms. Dressman 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.

With Thelma, Ms. Dressman discussed a new piece of equipment that would improve quality of life. The women also chatted at length about their children. “It’s nice to have people you feel comfortable with care for you,” Thelma says.

In her early 70s, Thelma has experienced a disease progression that is slower than average. She has lost the use of her lower limbs but gets around in a wheelchair and still enjoys sewing quilts for her family.

“When you think you’ve just got it figured out, you find that you can do something one day and the next day you can’t,” she says. “We all start out differently. No two people with ALS are the same. But we all end at the same place. The muscles in your throat and lungs fail; that’s what happens in the end.”

Thelma’s first symptoms involved fatigue and unexplained falls at work. Arriving at her diagnosis took a year. “Figuring out what was wrong was a process of elimination,” she says.

An entrepreneur who ran a boutique, Thelma has maintained her beauty and sense of style throughout her illness. She dresses with a simple rule of thumb: “If I put something on and it makes me look sick, I take it off.”

— Cindy Starr

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