Understanding ALS

By Melanie Taylor, MD, Trinity Heath Medical Group, Neurology; Medical Director, Trinity Health Hauenstein Neurosciences Neuromuscular Program; and Clinic Director for ALS and MDA.

Amyotrophic lateral sclerosis (ALS) continues to be a rare disease and is also one of the most difficult diagnosis a patient can receive. There is no sugar coating it: ALS is a fatal disease.  While research into finding more effective treatments and, hopefully, a cure continues – there are steps that patients, and those who support them, can take to manage this terrible disease. 

What is ALS?

ALS, also sometimes referred to as Lou Gehrig’s disease, is a progressive neurodegenerative disease that destroys nerve cells in the brain and spinal cord, causing loss of voluntary muscle control. It leads to paralysis, speech and swallow changes, difficulty breathing, and eventually causes death. 

What causes ALS and who is most at-risk?

While most diagnoses occur between ages 40–70, ALS can affect people much younger. “Young-onset” ALS (before age 45) accounts for roughly 10% of cases. 

The exact cause of ALS is unknown. However, a number of factors, including genetics and  environmental exposures, have been linked to an increased risk of developing the disease.

About 10% of ALS cases are familial and linked to genetic mutations. The other 90% are considered sporadic, meaning they occur without any known family history of the disease. 

What are the early symptoms of ALS to look for?

Early symptoms can include muscle weakness, difficulty walking, tripping, and dropping objects. Muscle twitching and cramps, changes in speech, difficulty swallowing and emotional changes, like uncontrollable laughing or crying, can also develop. 

The most common symptom of ALS is weakness in a hand or foot (drop foot) and weakness that slowly spreads to other areas of body.

How quickly does ALS progress?

The time between when a patient develops symptoms of ALS and how quickly the disease progresses can vary widely. While the average life expectancy of a person diagnosed with ALS is 2 to 5 years, many live much longer—sometimes 5, 10, or more years — especially with supportive care. 

Supportive care is a holistic, patient-centered medical approach that manages the many facets of the disease to enhance quality of life and symptom management. It addresses the physical along with mental, spiritual and social aspects of disease for both patients and their loved ones and caregivers.

What treatments for ALS currently exist and what does Trinity Health offer?

Our main goal in treating ALS is to help the patient live as well as possible, manage their symptoms, and slow down disease progression with FDA approved medications.

The most important intervention for patients is involvement in a multidisciplinary team ALS clinic, which is what we have at the Trinity Health Medical Group, ALS & Muscular Dystrophy Clinic - Grand Rapids Campus. The clinic was the first in Michigan to be recognized as an ALS Association Certified Treatment Center of Excellence. The team helps guide management of complex issues and patients can see many experts at one visit verses having to come back for multiple separate visits. It’s comprised of compassionate, dedicated members including neurologists, nurses, physical/occupational therapist, speech therapist, social worker, respiratory therapist, dietician, ALS association representative, wheelchair expert and more.

Our clinic also has several unique aspects including spiritual care, a neurologist that specializes in palliative care and involvement in ALS research trials. 

Learn more about Trinity Health Michigan’s Neuromuscular Disorders Program.

Neuromuscular Disorders Program