By Maria Ledger – CEO, My Choice Family Care
What is ALS?
Amyotrophic lateral sclerosis (ALS)—also known as Lou Gehrig’s disease—is a degenerative disease that affects the nerve cells (neurons) in the spinal cord that are responsible for controlling voluntary muscle movement in the rest of the body. Once ALS symptoms have developed, the disease will progress over time—though how it affects the body and how quickly it advances varies from person to person. According to the ALS Association (ALSA), improvements can occur, but they are unfortunately only temporary. As the nerve cells inevitable die, a person’s ability to use their muscles declines, affecting their movement, speech, and even breathing.
What Causes ALS?
Despite the amount of information available about the disease’s process, exactly what causes ALS is not known. The ALSA states that genetics (which contribute to “familial ALS”) are involved in as few as five percent of all documented cases. The more prevalent form of the disease—“sporadic ALS”—makes up to 95 percent of all known cases. There are some factors that may increase the likelihood of developing ALS. Military veterans have been shown to be twice as likely to develop this disease. The average age of diagnosis is 55 years old. Men are initially more likely to be diagnosed than women, but those statistics even out with age. Despite these factors, the ultimate takeaway is that anyone can develop ALS, regardless of race, age, gender, or health.
Diagnosis and Statistics
ALS does not progress in any predictable pattern, which makes early diagnosis especially difficult. There are many other diseases that have similar symptoms that must be ruled out. Initial symptoms can include weakness, fatigue, or stiffness of muscles or slurring of speech—symptoms which are not necessarily unique to ALS. Because of these nondescript symptoms, any person who has been diagnosed with ALS should obtain a second opinion. According to the ALS Wisconsin Chapter, more than 400 patients in Wisconsin are currently fighting this disease. Worldwide, a new person is diagnosed with ALS every 90 minutes.
What Can Be Done?
While there is no known cure, there are steps that can be taken to help maintain quality of life. For example, an FDA-approved drug known as Riluzole has been shown to lengthen life expectancy. Addressing feeding issues early on also helps ensure proper nutrition when swallowing begins to become difficult.
ALS and Family Support
The most important aspect for maintaining quality of life, however, is the support provided by caregivers. It is estimated that 80 percent of caregivers for those affected by ALS are relatives. This familiarity helps lend a sense of comfort and control which is crucial during challenging times. The ALS Wisconsin Chapter offers support to family members of those battling ALS in the form of the ALSA Care Connection—a program staffed entirely by volunteers who provide respite and much-needed care for caregivers.
My Choice Family Care and the ALSA have many parallels. Our organizations are each dedicated to providing the best of possible care for people who need help maintaining their independence. Both focus on utilizing family for support and caregiving. And both want those in our group to be able to live their lives to the fullest.