As a caregiving blogger, I don’t often write about specific diseases. But ALS – or Lou Gehrig’s disease – has been on my mind lately. You see, in addition to writing about caregiving, mental health, and aging issues, I also work on creative projects such as fiction and nonfiction manuscripts.
My most recent project includes references to honorable baseball players. Is it any wonder that I have Lou Gehrig on the brain? This incredible athlete and principled man exemplified courage and grace as he faced what was, at the time, a little known disease. As I began reading more about ALS, I wondered if a simple FAQ about the basics of the disease might be helpful for caregivers, whether or not your family is dealing with ALS. Knowledge is power, and it certainly can’t hurt to know about such a debilitating illness and available resources in case you or someone you know could benefit from this information someday.
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Here are the answers to five common questions about ALS:
1. What is ALS?
ALS stands for “amyotrophic lateral sclerosis.” ALS is a disease that affects the nerve cells in the brain and spinal cord that control voluntary muscle movement. It is a progressive disease, meaning that the nerve cells continue to degenerate over time until they eventually die. When this happens, it becomes difficult for the person to initiate and control muscle movement. ALS can eventually result in total paralysis, difficulty breathing, and death.
2. Who gets ALS?
According to the ALS Association, as many as 30,000 Americans have ALS at any given time. Because it is a relatively rare disease, records are kept regarding the characteristics of those who have been diagnosed. This database shows that approximately 60% of people with ALS are men, and that 93% are Caucasian. The majority of people who develop ALS are between the ages of 40 and 70, with an average age of 55 at the time of diagnosis.
Only 1 out of 10 cases of ALS can be tied to a genetic defect. While research on the risk factors for developing ALS is focused on both genetic and environmental factors, history has shown that no one is immune. Lou Gehrig was one of the most talented baseball players in the history of the sport and was diagnosed with ALS on his 36th birthday. The disease has since been referred to as “Lou Gehrig’s Disease” by many.
3. How is ALS diagnosed?
Like many other neurodegenerative diseases, there is no singular test that can identify ALS. Instead, diagnosis is a complicated process of ruling out all other possible causes for the person’s symptoms. This process can involve electrodiagnostic tests, blood and urine tests, imaging such as an MRI or x-rays, a spinal tap, muscle or nerve biopsies, and a thorough neurological exam.
The ALS Association maintains a list of recognized experts and clinics in the field for families seeking a diagnosis. To find an ALS Association Certified Center, click here.
4. How is ALS treated? Is there a cure?
There is no known cure for ALS, but a medication called “riluzole” has been found to slow the progression of symptoms in some people. Other medications may be used to treat specific symptoms. Additionally, physical therapy and rehabilitation interventions can help with some of the functional mobility issues that arise as the disease progresses.
5. What resources are available for people with ALS and their families?
The ALS Association maintains a page on its website for people with ALS and their caregivers (click here). The page connects families with reading materials, videos, support groups, clinical trials, and volunteer assistance through local chapters (see the ALS Association Care Connection).
If your family is touched by ALS, please share additional information and resources that you have found helpful during your journey. You never know what lives you may touch by sharing your wisdom.
ALS Association (Copyright 2010). About ALS Topic Page: http://www.alsa.org/about-als/
Amyotrophic lateral sclerosis (Last reviewed Aug. 26, 2012). A.D.A.M. Medical Encyclopedia via PubMed: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001708/