Helping those with amyotrophic lateral sclerosis

After nearly 18 years of working with amyotrophic lateral sclerosis (ALS) patients, Pam Glazener had a vision. Glazener, an occupational therapist at Houston Methodist, ached to find a way to improve the lives of the people she encountered every day.

Those are people with ALS, a neurodegenerative disease that causes progressive muscular weakness. As the body’s nerves wither and die, there is nothing left to stimulate muscle tissues, so the body gradually wastes away. ALS leaves a healthy mind trapped inside a helpless body.

People with ALS develop weakness in a group of muscles called the neck extensors, which hold the head upright. Glazener encounters many patients with neck weakness that must rely on an external support for head control, like a brace or a specially-equipped wheelchair with neck support.

“Many of the braces support the neck from the front, with a piece that attaches to the chest and comes up under the chin,” she explains. “While that worked to support the head, I also saw these braces restrict speaking, eating and sometimes breathing.” She envisioned a different kind of brace, one that would offer head and neck support, but from behind the head.

Pam Glazener adjusts the head support on her prototype neck brace for ALS patients.
Pam Glazener adjusts the head support on her prototype neck brace for ALS patients.

Pam’s design moves the business end of the brace to the back. A head support reaches up the neck and secures around the forehead, keeping the jaws free for movement. The lower part of the brace secures closer to the waist rather than around the chest, allowing patients with lung and diaphragm weakness to breathe more easily.

“When patients have no head control, they often have to rely on a wheelchair or become bedridden,” she says. “What I like about (this new) design is that it keeps patients talking, eating, breathing and walking.”

Working with a company that manufactures braces, Pam worked up a prototype of her brace and conducted a small study on patients at the Vicki Appel MDA/ALS Center at Methodist Neurological Institute. Her study found the prototype allowed ALS patients with neck weakness to remain ambulatory while maintaining or improving their breathing.

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Encouraged by the results of this initial study, Pam plans to conduct more research and development. When that is complete, Houston Methodist Hospital will attempt to identify a company to manufacture the brace and place it on the market.

Each year ALS affects an average of 3,000 people in the United States, usually between the ages of 40- 70 years old. Many know ALS better as Lou Gehrig’s disease, after the New York Yankees first baseman who retired in 1939 upon learning of his diagnosis with the disease.

This July 4 will mark the 75th anniversary of Gehrig’s iconic farewell speech, where he told thousands of people in Yankee Stadium and countless more listening in on radio, “I consider myself the luckiest man on the face of this earth.” He died less than two years later, at the age of 37. He remains a source of inspiration for tens of thousands of patients and caregivers like Pam Glazener.

It’s my great joy to possibly make a difference in the lives of some of our patients. If I can help improve the quality of life for just one patient, I’ve done my job.

Obviously, for Pam this is more than a job. “My patients are my extended family,” she explains. “When I can’t see them in person, we communicate through email, asking questions and getting advice. One of my original patients (from 18 years ago) is still living … so I am always happy to provide some hope.”