Southeast Louisiana Veterans Health Care System

The SLVHCS ALS team. Front row - Darla Pascal, Keith Taranto, Betsy Walker, Chrissie Trosclair, Dr. Kiersta Kurtz-Burke. Back row - Mark Blanchard, Troy Murphy, Leslie Clement, Barbara Mazzanti.

After extensive staff planning and patient input, a specialty clinic to serve amyotrophic lateral sclerosis (ALS) patients is now a reality at the Southeast Louisiana Veterans Health Care System.

ALS, also known as Lou Gehrig’s disease, is a terminal, muscle-wasting illness, according to Dr. Kiersta Kurtz-Burke, a rehab physician with the ALS clinic. She said the disease destroys motor neurons, preventing electrical impulses from travelling between the brain, spinal cord and voluntary muscles. Once those are lost, the muscles waste away. There is no known cure or effective treatment for ALS.

“The clinic is a much needed service and a small way of creating the perfect patient experience for Veterans suffering from ALS,” Dr. Kurtz-Burke said. 

The clinic gives Veterans access to specialists who come to the patient during their appointment, instead of having to visit numerous clinics at different times. Specialty care includes rehab, neurology, respiratory, occupational, speech and physical therapy, laboratory, pulmonology, social work and other medical care needs. 

The clinic does not provide primary care or mental health services.

Dr. Kurtz-Burke said that the first multidisciplinary ALS clinic started in June 2012 at SLVHCS but the patients were grouped with spinal cord injury patients. “Over the course of the past few years, the number of ALS patients has increased and the needs are very different from spinal cord injury patients,” said Dr. Kurtz-Burke. “That was the main reason for starting the clinic.

ALS is a rapidly progressive disease. Patients tend to have a lot more pulmonary and communications issues than SCI patients.”

The clinic is available to patients every third Thursday of the month and is located at 1601 Perdido Street, ninth floor clinic, starting at 8 a.m.

One issue ALS patients usually face is degradation of their communication abilities, and the clinic also helps them address those issues, according to Mazzanti.

“When we can catch it in its early stage, when the patient can still communicate verbally, we can use voice banking, (a program where specific sentences from the patient are saved electronically), so when they communicate, it’s their voice, not a computer voice,” Mazzanti said.

Speech, mobility and swallowing are all things affected by ALS; most patients end up in a special wheelchair. “It’s an incredibly overwhelming disease because it literally affects every aspect of your body,” said Mazzanti. “It’s a constant downward spiral.”

According to Darla Pascal, a social worker here and ALS clinic champion, the clinic makes good on a promise. 

“With the opening of this clinic, we are delivering on the promises made to our Veterans to improve their ability to get care, and to deliver the perfect patient experience,” Pascal said.

 A representative from the ALS Association is also on hand during the clinics and leads several support groups for ALS patients. The support groups are held in the community, not at SLVHCS. 

The ALS Association website states that they serve the needs of patients living with ALS, and their caregivers, and their mission is to lead the fight to cure and treat ALS through global, cutting-edge research, and to empower people with Lou Gehrig’s disease and their families to live fuller lives by providing them with compassionate care and support.

Some of the services available include a medical equipment loan closet, a respite care program, support group meetings, books and videos about ALS, a patient care support fund and a public awareness/education program.