ALS Awareness Month: Understanding the Disease and Its Impact

The mention of ALS might bring to mind the viral Ice Bucket Challenge of summer 2014 or the renowned theoretical physicist and cosmologist Stephen Hawking, who lived with the disease for more than 50 years. These associations have played a significant role in raising awareness about ALS, but there is much more to understand about the disease and its impact on individuals living with it.

What is ALS?

ALS, or amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, is a neurodegenerative condition that targets motor neurons. These neurons are responsible for sending signals from the brain to the muscles, enabling movement. As ALS progresses, these neurons deteriorate and die, leading to loss of muscle control. Eventually, a person diagnosed with ALS will lose the ability to walk, speak, eat and breathe. Currently, there is no cure for ALS.

What is the life expectancy of a person diagnosed with ALS?

ALS is a progressive disease, meaning symptoms get worse over time; however, the rate of progression varies from person to person. According to the ALS Association, after diagnosis, the average survival time is about three years. Some individuals may live for a shorter or longer time depending on their individual case.

What are the first warning signs of ALS?

Early signs of ALS include:

• Changes in walking: Frequent trips and falls due to muscle weakness, affecting balance and coordination.
• Arm and hand weakness: Difficulty with tasks like grasping a pen or holding a cup, often leading to dropping items.
• Slurred speech: Caused by weakening of the muscles involved in speech, leading to difficulties in articulation.
• Muscle cramps and twitches: Involuntary muscle movements due to nerve signal disruptions, also known as fasciculations.
• Pseudobulbar affect: Episodes of uncontrolled laughing or crying, due to brain pathway disruptions.

What is ALS caused by?

When discussing rare diseases like ALS, it’s important to distinguish between a cause and a risk factor. A cause directly leads to a disease, but for ALS, the exact cause remains unknown. Instead, researchers focus on risk factors—elements that might increase the likelihood of developing ALS, though they don’t guarantee it. You might have several risk factors and never develop ALS, or you might have none and still be diagnosed.

Some risk factors include:

• Environmental toxin exposure: Frequent exposure to beta-methylamino-L-alanine (BMAA), heavy metals, pesticides, herbicides, insecticides and solvents, as well as occupations that increase exposure to toxins, have been shown to be risk factors for developing ALS.
• Military service: Studies show Veterans are at an increased risk of developing ALS. Theories suggest head injuries or exposure to toxins while in the military contribute to this risk.
• Brain and spinal cord injuries: Trauma to the head, neck or spine can increase the risk of developing ALS. Risks are higher among people who sustain more severe injuries.
• Genetic factors: 90% of ALS cases are sporadic, occurring without a known family history or genetic cause; however, 10 percent of cases are inherited through a genetic mutation.
• Smoking: The role of smoking in increasing ALS risk remains debated, with some studies indicating a higher risk among current or former smokers compared to non-smokers.

How do doctors diagnose ALS?

Diagnosing ALS isn't straightforward. It requires a series of tests, such as blood and urine tests, X-rays, and spinal taps, rather than a single test.

Comprehensive care plays an important role in managing ALS. Healthcare providers can help treat the condition, focusing on symptom management and quality of life as the disease progresses.

Medications approved by the Food and Drug Administration (FDA) can be prescribed to help slow the progression of the disease or combat related symptoms.

Additionally, therapies play an important role in managing ALS, even though the disease is progressive. While ALS cannot be cured, physical therapy, occupational therapy and speech therapy can enable individuals to adapt as the disease advances, ensuring everyday activities remain manageable for as long as possible.

Can people with ALS recover?

In rare cases, some individuals experience what is known as ALS reversal, which involves significant recovery of lost motor functions. Only about 50 ALS reversals have been documented since the 1960s. Ongoing research and clinical trials are being utilized to determine future treatment options and potential cures for the disease.

ALS Awareness, Resources and Community

ALS is one of many conditions that can affect mobility. If you or a loved one is living with ALS, contact your local BraunAbility dealer to learn more about accessible vehicles and mobility products. For more information about ALS, visit the ALS Association website. While ALS Awareness Month is observed in May, multiple disability awareness months are observed throughout the year. Read the related articles below to learn more about mobility disability awareness months.