The gold standard of care for an ALS Patient is an ALS Center of Excellence. There are currently 132 Centers of Excellence in the United States. This is a group of medical providers who have been recognized by the ALS Association as providing the most appropriate, caring and up-to-date care as possible, as well as being a center that participates in clinical trials as appropriate. We were fortunate to live an hour away from just such an ALS Center of Excellence: the Providence ALS Center in Portland, led by neurologist Kim Goslin, MD, PhD, an amazingly caring and supportive person. The Providence ALS Center is a collaboration between the Providence Brain and Spine Institute and the ALS Association of Oregon and Southwest Washington.
Attending an ALS Clinic is a marathon appointment that typically happens every three months. It is a four-hour appointment, with no breaks. You see up to 14 providers on the care team in that four-hour period, depending on your level of progression:
Neurologist
Pulmonologist
Speech Language Pathologist
Augmentative Communication Specialist
Respiratory Therapist
Occupational Therapist
Physical Therapist
Social Worker
Registered Nurse
Gastroenterologist
Dietitian
Psychologist
Clinical Research Coordinator
Hospice Coordinator
It’s a “one-stop shop” where the patient is placed in a room, and the providers come to the patient. It is overwhelming and intense, with some provider visits lasting only 15 minutes and others 30 minutes.
After the Clinic appointment, the entire care team meets to review every patient they have seen that day, and they develop an updated care plan. They write prescriptions for medications, equipment and services. They follow up on clinical trials and evaluate who might qualify for which trials.
This team approach is the gold standard because it treats the whole person, addressing physical, emotional and medical needs, and has the ability to address spiritual needs as well. This model has repeatedly shown improved quality of life and length of life for ALS patients.