The mission of the Providence ALS Center of Excellence is to provide comprehensive and expert care to people with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease. ALS is a rapidly progressive and fatal neuromuscular disease. Though it is not yet curable, it is very treatable. There are many things that we do to slow disease progression, improve quality of life, and help people continue to find joy in life. Our team is dedicated to supporting people with ALS and their loved ones from diagnosis to the end of life.
The gold standard for treating people with ALS is the multidisciplinary clinic model, which we have used here at Providence for nearly 15 years. Our multidisciplinary clinic meets twice a week, and patients generally attend once every three months. Over the course of one afternoon, patients and care partners are able to see up to 10 ALS specialists:
- occupational therapist
- physical therapist
- speech therapist
- augmentative and alternative communication specialist
- ALS nurse
- ALS social worker
- palliative care nurse
We also have a team psychologist and other specialty providers we work with closely. It is a long afternoon, and snacks are always available for patients. The team then meets to debrief and develop an expert, comprehensive, and proactive treatment plan. We truly get to know and appreciate our patients during these discussions.
Our Center continues to grow and offer more services including an e-newsletter, care partner “bootcamp” classes to help with at home care, and classes on mindfulness and meditation techniques to help with the stresses associated with the disease. We offer several support groups as well as a unique support system for the care partners of patients who have frontotemporal dementia, which is a challenging cognitive impairment that can be associated with ALS. When possible, we even do follow up visits by telemedicine for patients who are no longer able to leave their homes.