ALS – Knowing the Disease on a Personal Level

_DSC0014[1]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.

file0001911591111[1]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.

file000356994816[1] 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.

The average age of onset is fifty to seventy years old. However, it has been known to attack people in their twenties as well as those in their eighties.

file0001583930521[1] 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.

51Osd7QSDELMy 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

IMG_3143 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

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.


About Lynn Miclea

LYNN MICLEA grew up in New York and moved to California while in her twenties. A certified hypnotherapist, Reiki master practitioner, and musician, with a bachelor’s degree in psychology, she has held many jobs but has always loved reading and writing stories. After retiring, Lynn further pursued her passion for writing, and she is now a successful author with many books published and more on the way. She has published many fiction, nonfiction, and children’s books, and she hopes that through her writing, she can help empower others and add more joy and love to the world. She asks everyone to be kind to each other as we all share this journey through life together. Lynn currently lives in the Los Angeles area with her husband and two dogs. Please visit her website at
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4 Responses to ALS – Knowing the Disease on a Personal Level

  1. Diane Burton says:

    Very informative post, Lynn. I’m so sorry to hear about your mother’s struggles. It is so hard to watch a family member (esp a mother) “disappear” because of illness. Your last sentence is very powerful.

    • Lynn Miclea says:

      Diane, thank you so much for your comment, I really appreciate that. Yes, it is very hard to watch a family member struggle with any of these issues. Thank you for your kind words. ❤

  2. There are so many awful diseases. People don’t realize how lucky they are to be healthy. My mother had Retinitis Pigmentosa, a degenerative disease of the retina that left her blind. I thank god each day that I didn’t inherit it. It is a recessive trait but I didn’t understand this when I was growing up.

    • Lynn Miclea says:

      Susanne, thank you for your comment. You are so right – our health is not something to be taken for granted. I am grateful for every moment of being healthy. And I’m so sorry about your mother – it must be horrible losing your sight, I can’t even imagine that. And yes, it is natural to worry about getting whatever our parents had. My mom had ALS and my dad has alzheimer’s. So far I am healthy, and I thank God for each day. ❤

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