Amyotrophic lateral sclerosis, also known as ALS, or Lou Gehrig’s disease, is a progressive and fatal motor neuron disease. On average, a new person is diagnosed with ALS every 90 minutes. It is estimated that at any given time, about 30,000 people have ALS, and approximately 5,600 people each year will die from this.
In ALS, motor neuron cells in the spinal cord and lower brainstem degenerate and die, which then affects the related voluntary muscles. When the nerve impulses no longer reach those muscles, the muscles get progressively weaker, until they atrophy and become useless. In 75 percent of those with ALS, the limbs are affected first and initial symptoms include weakness in the arms or legs. It can show in stumbling, tripping, falling, dropping things, or trouble gripping items. In about 25 percent of cases, the bulbar muscles, which are those used for talking, chewing, and swallowing, are affected first. This can show in slurred, slow, or thick speech, and trouble with chewing or swallowing.
Whichever areas are impaired at the onset, weakness eventually spreads to other voluntary muscles. As the disease progresses, the patients generally get weaker and may lose strength in their arms or legs. They may lose the ability to speak, chew, or swallow. They may have fasciculations, or muscle tremors. Their lungs may get weaker, making it more difficult to breathe. Many choose to use a feeding tube to help get adequate nutrition. Many choose to go on a ventilator to help them breathe better. And many also reject these devices — this is really the choice of the patient.
Diagnosis is difficult, as many other diseases have similar symptoms and there is no one single test to confirm ALS. These patients often go to many doctors and endure many different tests, trying to find out what is wrong. It often becomes a long process of ruling out other diseases until ALS is all that is left.
ALS is progressive and fatal. There is no known cause (although it is known to be inherited in some cases), no treatment (other than possibly slowing the disease progression in some cases), and no cure. For most ALS patients, death usually occurs two to five years from the time of diagnosis. For some, it is even less time; however, some people, such as Stephen Hawking, live longer than ten years. Symptoms, severity, and speed of progression can vary fairly widely among patients.
My mom had bulbar-onset ALS, so that the muscles in her mouth and tongue were affected first. For her, the first symptoms were slow speech and difficulty chewing. As the disease progressed, she was fed through a feeding tube so that she could get adequate nutrition. The disease then moved into her limbs, and she began falling and eventually fractured one of her hips. She soon found it more difficult to breathe, and she used assistive devices to help inflate her lungs. She finally passed away in 2009 at the age of 81. For anyone interested in more information about her experience with ALS, or to see the memoir about her experience with ALS, please visit my website at www.lynnmiclea.com.
It is important to know that symptoms vary and that it’s different for everyone. For those who have ALS, it is important to reach out to others and find support. Know that you are not alone. It is also important to find some relief. There is a time for anger, frustration, crying, and even grief, as there is a loss of health. But please don’t let that be all there is — please also find something every day that brings you joy or makes you smile.
For additional information on ALS, please visit the official ALS website at www.alsa.org.
ALS is a horrific, debilitating, and devastating disease, and my heart goes out to anyone or any family that is touched by this. Please remember that you are not your body and not your disease, and you are still valuable, worthwhile, and loved.
Copyright © 2015 Lynn Miclea. All Rights Reserved.