Providence ALS Center
Providence ALS Center
Providence ALS Center eases the way for patients to receive care and maximize their quality of life. Here, specialists come to the patient. At one four-hour appointment, a patient may see as many as 12 specialists – all in one location. An ALS nurse serves as the patients’ guide, helping them identify needs, follow through on treatment plans and connect to resources. This approach brings specialists together as a team to identify the best treatment options and improves survival and quality of life for patients with ALS.
We have the largest comprehensive care center in Oregon for people with ALS, and were the state’s first certified Center of Excellence. Our team is actively engaged in clinical trials and is one of the only Western sites offering the Diaphragmatic Pacing System. The Providence ALS team is passionate about providing excellent, compassionate and holistic care for each patient.
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.
- Addressing respiratory changes
- ALS Association Oregon and SW Washington chapter
- Cure Progressive Supranuclear Palsy: Foundation for PSP, CBD and Related Brain Diseases
- The ALS Association
- Providence Together: Creating a Better Story
Learn more about ALS, wellness and our team.
- Issue 7: Summer/Fall 2021
- Issue 6: Winter/Spring 2021
- Issue 5: Summer/Fall 2020
- Issue 4:Winter/Spring 2020
- Issue 3: Summer/Fall 2019
- Issue 2: Winter/Spring 2019
- Issue 1: Summer/Fall 2018
Please note: All people attending the Providence ALS Center must be referred by their primary care physician or a consulting neurologist or specialist.
When you come to the Providence ALS Center for the first time, you will interact primarily with a neurologist who is an expert in ALS and neuromuscular diseases. The goal is to establish your specific diagnosis with as much certainty as possible.
Many people attending the center for the first time have been previously evaluated by one or more neurologists. If you’re like them, you may have been told that you may have ALS, or that you have a neuromuscular disease. At our clinic, you are given a comprehensive examination, a complete neurological history is taken, and all of your records of past tests are reviewed.
Using this information, our neurologist may order various tests as needed. This may include studies of your blood and urine, and radiologic studies (x-rays, CT scans, and MRI scans). You’ll likely also be scheduled for electro-diagnostic testing (EMG and nerve conduction studies). More involved testing, such as a lumbar puncture (spinal tap), muscle biopsy, or nerve biopsy may be scheduled.
After the neurologist reviews these tests, you will be seen again in a follow-up appointment, usually accompanied by your family and other loved ones, for a detailed discussion of your diagnosis with the neurologist. If ALS is confirmed, you’ll be provided with information, including a review of established and experimental treatment options. The ALS Center Nurse Manager may be present at that visit as well. If not, you’ll be scheduled for a a follow-up evaluation with the nurse manager. The neurologist and nurse will work together with you and your family to establish a plan to treat ALS and manage your symptoms.
You’ll likely be seen in our multidisciplinary clinic about once every 3 months, on average. During these appointments, you and your family remain in one exam room for about 3-4 hours while various members of our team come in to perform evaluations. Precisely which team members see you on any given day depends on the type of ALS-related problems you are having, and is determined by your neurologist and nurse, in consultation with you and your family.
You will receive measurements of your weight and breathing capacity, as well as evaluations by the neurologist and nurse. You will then seen by some or all of the following team members: physical therapist, occupational therapist, speech language pathologist, nutritionist, communication specialist, and a social worker.
After each visit to the Providence ALS Center, you will receive a plan with recommendations from the multidisciplinary team. The ALS Center nurse or social worker will follow up with you to support your in implementing those treatment recommendations.