Helping ALS patients preserve their highest quality of life
[6 min read]
In this article:
- ALS is a neurological disease for which there is no known cure. Over time, ALS patients lose their ability to walk, talk, speak and breathe on their own.
- Over 5,000 people a year are diagnosed with ALS.
- Swedish is home to a Certified Center of Excellence for ALS care.
ALS, or Amyotrophic Lateral Sclerosis, is a progressive neurological disease for which there is no known cure. Persons with ALS slowly lose their ability to walk, speak, eat and eventually breathe as the brain loses connection with the muscles. Over 5,000 people a year are diagnosed with ALS and someone dies of the disease every 90 minutes. The average life expectancy of a person with ALS is 2 to 5 years.
Swedish is home to a Certified Center of Excellence for ALS, which offers patients a multidisciplinary team of caregivers who work with patients and their families to diagnose and treat ALS. Swedish team members work with patients to manage their symptoms and access the technology and services to help them preserve their highest quality of life.
May is ALS Awareness Month. We spoke with Medical Director of the Swedish ALS Program, Michael Elliott, M.D., to learn more about ALS and the services offered here at Swedish.
What is ALS? And how does it affect the body?
Amyotrophic Lateral Sclerosis, or ALS, is a neurodegenerative disease where neurons in the nervous systems are slowly dying and patients with this disease develop progressive weakness, difficulty with speech and swallowing, and eventually difficulty with breathing.
Who gets ALS and how?
Anyone can get ALS. Most people are between the age of 40 and 70, with the mean age of patients being about 55. Men are more likely to develop the disease; there’s a male to female ratio of about 1.6:1. About 10% of patients have a family history of ALS and there are several genes associated with the disease. People who have served in the military are twice as likely to develop ALS. There are also several suspected environmental risk factors, such as contact sports and pesticide exposure.
What are some common symptoms? How is it diagnosed?
The most common presentation is progressive painless weakness in an extremity. This is what is called “limb-onset” ALS. Other presentations include “bulbar-onset,” which is characterized by progressive difficulty with speech and swallowing. And the least common is “respiratory onset,” where patients present with slowly progressive difficulty with breathing and shortness of breath.
Because there are several more common reasons for people to develop weakness, slurred speech, or shortness of breath, ALS can be challenging to diagnose when it is first starts. There is no one diagnostic test. Typically, we need to rule out a number of other causes and patients get laboratory testing, imaging with MRIs, and another test referred to as EMG/NCV testing to assess the muscles and nerves. These tests allow us to diagnose the disease and rule out other conditions that can look like ALS early on.
Genetic testing has become increasingly important in the diagnosis of ALS. Gene panels have become more comprehensive and less expensive in recent years, so this is discussed with all of our patients.
Why is ALS referred to as Lou Gehrig’s Disease?
ALS is called Lou Gehrig’s disease after the famous baseball player for the New York Yankees who contracted this disease in the late 1930’s. He was an amazing baseball player and athlete and tragically contracted the disease at 36 and died 2 years later.
How is ALS treated?
There are now 3 treatments approved by the U.S. Food and Drug Administration (FDA) for ALS – these medicines are approved because in clinical trials they demonstrated a beneficial effect on disease progressive and or survival. There is a gene therapy for patients with a genetic form of ALS, SOD1, that is currently under review by the FDA and we should hear if this is approved on April 25. There are also a number of medicines given to patients for other symptoms they can develop related to the disease. Patients are also typically treated in multidisciplinary ALS clinics that bring forth a number of services for patients to help them live longer and more functionally with the disease.
Have there been any significant advancements in our understanding and the treatment of ALS?
First therapeutically, there have been several advancements. Two of the FDA approved medicines we use were recently developed – one in 2017 and one in 2022. As mentioned, there is a 4th drug, targeting a form of familial ALS for those with the SOD1 gene mutation, that will be before the FDA on April 25.
The understanding of the genetics behind ALS has advanced significantly. The number of genes identified that are associated with ALS has grown exponentially along with the understanding of how these genetic mutations cause the disease. This understanding has greatly contributed to our understanding of the disease overall and to develop more targeted therapies.
Tell us about services here at Swedish.
At Swedish we have a Certified Center of Excellence for ALS. We are certified by the National ALS Association and have a team of providers who work in our multidisciplinary ALS Clinic. This allows us to deliver comprehensive care for our patients. The providers include neurology, physical medicine, a nurse, respiratory therapist, physical therapy, occupational therapy, speech therapy, dietician, social worker, and a member of the ALS Association. All these providers see the patient and their family at every visit. This requires a tremendous amount of collaboration and patients, and their families benefit by seeing all these providers who rotate through to see the patient in a 3-hour appointment.
We also have several clinical treatment trials at Swedish and we discuss these trials with our patients. This affords patients the opportunity to get novel and potentially effective emerging treatments to slow down their disease.
Lastly, at Swedish we have another clinic in the Tri-Cities area of Washington state. Located in the Kadlec Healthplex in Richland, the Kadlec-Swedish ALS Clinic offers a team of providers at like we have in Seattle. The only difference is that I show up virtually and the physiatrist or physical medicine doctor shows up virtually. This allows people to be seen closer to their home and not have to travel to see us in Seattle.
Learn more and find a provider
The ALS Program at the Swedish Neuroscience Institute offers patients with ALS and their families comprehensive, focused care. This multidisciplinary approach gives you access to innovative and proven treatments based on science and compassion. To learn more, or for a referral, call 206-320-3494.
Swedish Virtual Care connects you face-to-face with a nurse practitioner who can review your symptoms, provide instruction, and follow up as needed. If you need to find a provider, you can use our provider directory.
Join our Patient and Family Advisory Council.
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This information is not intended as a substitute for professional medical care. Always follow your health care professional’s instructions.