What is Amyotrophic Lateral Sclerosis (ALS), also called Lou Gehrig’s Disease?
This article was updated on: 09/15/2018
Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig’s disease, received a lot of media attention during the ALS Ice Bucket Challenge. According to the ALS Association, the donations helped lead to an important genetic discovery.
Read more in this article about amyotrophic lateral sclerosis (ALS), a progressive neurodegenerative disease, and possible Medicare coverage of treatment.
What is amyotrophic lateral sclerosis (ALS), aka Lou Gehrig’s disease?
According to the National Institute of Neurological Disorders and Stroke (NINDS), more than 12,000 people in the U.S. have a diagnosis of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. ALS is one of the most common neuromuscular diseases worldwide, and it affects people of all races and ethnic backgrounds, though it is more common among white males and non-Hispanics, according to NINDS.
According to NINDS, amyotrophic lateral sclerosis (ALS) is a progressive disease (meaning it gets worse over time) that eventually leads to full loss of voluntary muscle control (the muscle action we can control, like those in the arms, legs, or face). ALS usually doesn’t affect intelligence or the mind, and it does not affect the ability to see, smell, hear, or recognize touch. According to NINDS, most people who have ALS pass away from respiratory failure, usually three to five years after they start having symptoms; however, about 10 percent of people with ALS do live for 10 or more years.
What causes amyotrophic lateral sclerosis (ALS) aka Lou Gehrig’s disease?
According to the National Institute of Neurological Disorders and Stroke (NINDS), the cause of ALS is unknown. About 90% to 95% of all ALS cases happen at random with no clearly associated risk factors, and about five to 10% of all cases of ALS or Lou Gehrig’s disease are inherited.
According to the ALS Association, there are several research studies that investigate possible risk factors associated with ALS, but more research must be done about genetic and environmental factors to make a conclusion. NINDS has a goal of understanding the cellular mechanisms behind the disease and the influence of genetics and other risk factors. Researchers are also studying the role of physical trauma or behavioral and occupational factors in developing ALS; studies of military personnel deployed to the Persian Gulf region in 1991 show that they were more likely to develop ALS compared to personnel who were not in the region.
What are the symptoms of Lou Gehrig’s disease?
According to the ALS Association, in the early stages of the disease, the symptoms of ALS or Lou Gehrig’s disease may vary according to the person. However, the most common initial symptom of Lou Gehrig’s disease is gradual-onset, painless, and progressive muscle weakness.
According to the National Institute of Neurological Disorders and Stroke (NINDS), the parts of the body that show early symptoms depend on which muscles are first affected.
The earliest symptoms (according to NINDS) may include:
- Weakness in legs, feet, and ankles, or weakness in hands and wrists
- Tight, stiff muscles (spasticity); muscle cramps and twitching (fasciculations)
- Loss of manual dexterity for simple tasks like buttoning a shirt, writing, or turning a key
- Frequent tripping and awkwardness while walking
According to NINDS, people with ALS may also develop problems with moving, speaking and swallowing. Regardless of the part of the body that’s first affected, as amyotrophic lateral sclerosis progresses, the muscles grow weaker and atrophy, eventually affecting all voluntary movements. Although the rate of disease progression and sequence of symptoms may vary, eventually those with ALS will not be able to stand or walk, get in and out of bed on their own, or use their hands and arms. However, their cognitive abilities remain generally intact.
How is Lou Gehrig’s disease diagnosed?
According to the National Institute of Neurological Disorders and Stroke (NINDS), the symptoms of ALS in its early stages may resemble the symptoms of other neurological disorders or even infectious diseases. To be diagnosed with ALS, a person must have symptoms and signs of upper and lower motor neuron damage that aren’t attributable to other causes.
According to NINDS, your doctor may order one or more of the following tests to rule out other conditions to correctly identify ALS:
- Electromyography (EMG).This is a special recording test that detects the electrical activity of different muscles.
- Nerve conduction study. This test measures the ability of the nerves to send signals.
- Magnetic resonance imaging (MRI) scans. This is a procedure that takes images of the brain and spinal cord.
- Blood and urine tests.
- Muscle biopsy.
Does Medicare cover treatment for ALS or Lou Gehrig’s disease?
If you have amyotrophic lateral sclerosis (ALS), you qualify for Medicare coverage even before age 65; your Medicare coverage would automatically begin the same month as your Social Security or Railroad Retirement Board disability benefits would begin. For more information, please contact Social Security at 1-800-772-1213 (TTY users 1-800-325-0778). Representatives are available Monday through Friday, from 7 AM to 7 PM. If you worked for the railroad, you can contact the Railroad Retirement Board at 1-877-772-5772 (TTY users 1-312-751-4701), Monday through Friday, 9 AM to 3:30 PM.
Original Medicare (Part A and Part B) covers medically-necessary treatment for ALS. If you receive treatment as an inpatient in a hospital or other facility, Medicare Part A (hospital insurance) covers allowable expenses, while doctor visits, outpatient care, and medical equipment and supplies are covered under Medicare Part B (medical insurance).
According to the National Institute of Neurological Disorders and Stroke (NINDS), there is no cure yet for ALS, though the Food and Drug Administration (FDA) approved the first prescription drug treatment for ALS, Rilutek, in 1995. Other treatments focus on relieving the symptoms and side effects of the disease. This may include prescription drugs and some combination of respiratory, physical, and speech therapy, in addition to measures to help you breathe. Please see the ALS treatment article for more information on treatment measures.
Prescription drugs are not covered under Original Medicare, and if you need help paying for your medications, the Medicare Part D program can help with costs. One option is to sign up for a stand-alone Medicare Part D Prescription Drug Plan that will work alongside your Original Medicare benefits. Another option is to enroll in a Medicare Advantage Prescription Drug plan. Medicare Advantage (Medicare Part C) offers an alternative way to receive your Original Medicare benefits. A Medicare Advantage Prescription Drug plan offers the same benefits as Original Medicare (except for hospice care benefits, which Part A still provides), alongside prescription drug coverage benefits. You need to continue paying your Part B premium when you have a Medicare Advantage plan, along with any premium the plan may charge.
Do you have questions about Medicare coverage of ALS and your Medicare plan options? I’m happy to discuss them with you. You can schedule a telephone call or request more information via email by clicking one of the links below. You can learn more about me by clicking the “View profile” link below. To view plans in your area you may qualify for, click the Compare Plans button.
For more information about amyotrophic lateral sclerosis, please see:
“What is ALS?” The ALS Association, accessed August 16, 2016, http://www.alsa.org/about-als/what-is-als.html
“Amyotrophic Lateral Sclerosis (ALS) Fact Sheet,” National Institute of Neurological Disorders and Stroke (NINDS), last modified March 14, 2016, http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm