ALS Association's Services are Integrated into Patient Care
A diagnosis of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, can be devastating for patients and their families. They often feel overwhelmed by the enormity of this neurological disease, which causes progressive muscle weakness that will eventually lead to difficulty speaking, swallowing and even breathing. Nearly all of these families need help in managing the patient’s complex, changing medical needs and in making difficult decisions about breathing and feeding assistance.
Now, University Specialty Hospital and the ALS Association DC/MD/VA chapter have joined forces to create the Maryland ALS Clinic, a center where the ALS Association support services, such as access to specialized equipment and transportation reimbursement, are integrated into the patient’s care plan. An ALS Association patient services coordinator is a member of the multidisciplinary health care team that also includes neurologists, a pulmonologist, nutritionist, nurse practitioner, research coordinator and physical, occupational, speech and respiratory therapists.
“ALS is a complicated illness that impacts the entire family, not just the patient. By intervening early and coordinating care with these support services, we know that we can improve the quality of life for these patients and their families,” says Peggy Simon, M.D., a lung disease specialist and co-director of the Maryland ALS Clinic. Dr. Simon is also an associate professor of medicine at the University of Maryland School of Medicine.
“Because ALS is a progressive disease, the patient’s physical abilities and needs will continue to change, so an assistive device that worked well for a few weeks may not be adequate for the patient’s current situation,” explains Bonnie Gerecke, M.D., co-director of the Maryland ALS Clinic and an assistant professor of neurology at the University of Maryland School of Medicine. “Patients and their families may be struggling with day-to-day challenges and may not be aware of the resources available to them as the disease progresses. The coordination between the medical team and the ALS Association support services takes the burden off these families.”
The ALS Association representative on the team, Teri Clayton, a licensed social worker, meets with patients and their families at the clinic and can accompany them as they meet with physicians, nutritionists and therapists. She helps them understand the medical information and often makes follow-up home visits to see if they have questions or concerns about the care plan.
“The patients and their families take the lead, but I’m here to support them,” says Clayton. ”Because of our years of experience and funding through donations, the ALS Association is in a unique position to provide support for people with ALS and their families, and to anticipate their needs.”
The ALS Association can provide additional resources such specialized telephones and voice amplification equipment. People with ALS may be interested in assistance with sophisticated wheelchairs and complex computer programs to help with communication, so the association has a rehabilitation engineer who can consult on equipment use and set-up. There are grants that can help pay for transportation. And, the ALS Association organizes support groups for patients and their families. The DC/MD/VA chapter also has a library of video tapes, books and articles that families may find useful. Families can get information and support when making decisions about how to treat disease complications, such as difficulty eating, swallowing, breathing and lung infections.
The Maryland ALS Clinic, which opened July 3 at University Specialty Hospital, will also be working to become an ALS Association Center of Excellence, the only one in Maryland. The ALS Association developed the program as a way to set a high-quality standard for caring for ALS patients. Currently, there are just 30 centers across the country.
Following the ALS Center model, the Maryland ALS Clinic also coordinates the patient’s appointments so he or she will see the appropriate specialists and therapists in one visit instead of having to come back on several days -- an increasingly difficult task as the disease progresses.
“The Maryland ALS Clinic team is committed to helping people with ALS and their families meet the many challenges they face. The ALS Association DC/MD/VA Chapter is proud to partner with the clinic’s outstanding specialists at University Specialty Hospital,” says Ken Nicholls, executive director of the chapter. “Their extraordinary skills and experience ensure state-of-the-art, comprehensive and compassionate care for clinic patients.”
ALS is the most common motor neuron disease among adults. An estimated 30,000 people in the United States have ALS. About 5,000 people are diagnosed each year. The disease attacks the pathways and nerve cells that send signals from the brain to the spinal cord and muscles. There is no known cause. Life expectancy for people with ALS is three to five years.
“While there is no cure for ALS, patients and their families should know that early medical intervention and support can make a real difference,” says James Russell, M.D., a neurologist at the Maryland ALS Clinic and an associate professor of neurology at the University of Maryland School of Medicine. “By combining our medical expertise with the support and resources of the ALS Association, we believe the Maryland ALS Clinic will help patients and their families achieve the best quality of life possible.”
###University Specialty Hospital, a part of the University of Maryland Medical Center, is located in Baltimore’s Inner Harbor. It provides specialized care services to patients who are critically ill and have multiple complications that require continued hospitalization beyond the acute care setting. Programs include ventilator care, coma emergence and traumatic brain injury care.
For patient inquiries, call 1-800-492-5538 or click here to make an appointment.