Five Myths about ALS

While recent years have brought a wealth of new scientific understanding regarding the physiology of ALS, there is still some mystery and misinformation surrounding the disease.

Below we break down five of the most common misconceptions about ALS.

1. ALS is strictly hereditary.

In reality, the majority of people diagnosed with ALS have no family history of the disease. About 90 percent of ALS cases are sporadic, meaning the cause or causes are unknown. The remaining 10 percent of ALS cases are familial and inherited through a mutated gene. In those families, there is a 50% chance that each offspring will inherit the gene mutation and may develop the disease.

There are several research studies – past and present – investigating possible risk factors that may be associated with ALS. More work is needed to conclusively determine what genetics and/or environment factors contribute to developing ALS. It is known, however, that military veterans are approximately twice as likely to develop ALS.

2. Only older people are affected by ALS.

Most people who develop ALS are between the ages of 40 and 70, with an average onset of 55.  But there are many cases of people in their twenties and thirties who have been diagnosed with ALS.  This “young onset” ALS typically refers to people younger than 45 years old and accounts for about 10% of all cases. 

Although the life expectancy of a person with ALS averages about two to five years from the time of diagnosis, the disease is variable. Many people can live with the disease for five years or longer. In fact, more than half of all people with ALS live more than three years after diagnosis.

3. ALS does not affect brain function.

While not common, approximately 20% of individuals with ALS also develop frontotemporal degeneration (FTD) which is characterized by changes in personality, behavior and speech.  Another rare form of ALS, known as ALS-parkinsonism-dementia complex (ALS-PDC) is characterized by signs and symptoms of ALS in addition to movement abnormalities (slow movements, stiffness and tremors) and loss of intellectual function. Cognitive and behavioral impairment in ALS can vary widely from individual to individual.

Some people with ALS develop a symptom called “pseudobulbar affect.” They may cry or laugh at inappropriate times or notice how once they start feeling an emotion, it is difficult to suppress it and not express it. Pseudobulbar affect is common in ALS and is the result of a brain reflex no longer working correctly. People with ALS can have pseudobulbar affect and no other cognitive, behavioral, or psychological symptoms.

4. Muscle loss and paralysis caused by ALS means you can’t feel pain or experience other sensations.

People with ALS, even at an advanced stage, can still see, hear, smell, and feel touch. The nerves that carry feelings of hot, cold, pain, pressure, or even being tickled, are not affected by ALS. ALS is a disease that affects the parts of the nervous system that control voluntary muscle movement. Involuntary muscles, those that control the heart, GI tract, bowel and bladder function, and sexual functions are not directly affected by ALS.

5. ALS affects everyone the same way.

From the initial symptoms to how the disease progresses, ALS can affect people very differently.  In fact, no two individuals present exactly the same. Some people’s disease progresses very slowly, while others have changes that happen more quickly. Some individuals have severe involvement in one area before the disease spreads, while others experience rapid progression throughout their body. Some people may have severe weakness of one area, but little in others (e.g., unable to swallow but still able to walk and drive), and still others may demonstrate a similar severity of involvement of different areas.

Eventually, ALS takes away the ability to walk, dress, write, speak, swallow, and breathe. How fast and in what order this occurs is very different from person to person.

ALS is a complex disease. For more detailed information about ALS, and the programs and services available to help people with ALS live a fuller life with the disease, please visit alsa.org.

16 thoughts on “Five Myths about ALS”

  1. Thank you for this, but could you also include the different onsets? Limb vs bulbar, etc. and what that means for the patient and their families. Also why were toxins (pesticides, herbicides, etc.) not listed as causes. That has been proven. Also head/spinal trauma and the highly suspect wireless electronics? Please don’t gloss over these – it only leads us further down the path of no progress in finding a cure.
    Cause = effect.

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      1. Hi Christie,

        Familial” ALS refers to ALS in which more than one family member is affected by the disease. About 10 percent of
        all people with ALS have familial ALS (fALS). The other 90 percent of ALS is called “sporadic,” meaning it has not
        occurred in other members of the family.

        Familial and sporadic ALS are similar in their effect on the person who has the disease. Both forms lead to the loss
        of motor neurons (nerve cells that control muscle movement), and both forms cause muscle weakness and loss
        of the ability to walk, speak, eat, move, and eventually breathe.

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    1. Bless you! I lost my Mother to ALS. She fought a long hard 2 year battle but never gave up. Pneumonia actually was the beginning to the end. I believe you can live to 100 as long as you keep the will to live. Much love and prayers for you success!

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      1. It’s not fair to people with the disease to cite the will to live or lack of will as a factor in their lifespan. I’ve lost 2dear relatives who wanted to live but didn’t last much more than one year.

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  2. This is great information. I am so sad my sister was diagnosed after one year plus symptoms . I have been a Registered Nurse for over 30 years and I have seen how ugly this disease is .I am heartsick that I cannot offer too much hope to family members. Know I pray daily for progress and new lights into this disease an its process.

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  3. Thank you for this info. While not directly affected by ALS, I am a supporter for elderly neighbors in a remote community. Husband is 50 miles away in an assiated living facility. I want to learn as much as I can about ALS to be more helpful to them both and to be a more knowledgeable advocate.

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  4. My husband passed away from this cruel disease within nine months of diagnosis. Pneumonias caused a havoc on him. He lost speech then swallowing and finally breathing. He had the will to live. He fought with a feeding tube in his stomach, a tracheotomy. He was mentally alert, loved hugs from the family and was able to walk with the help of a walker. He was a PhD., a scientist, read and admired the fighting spirit in Steven Hawking. Everyone who knew him loved and admired him. I am getting more and more knowledgeable now about this “ no cure yet” disease .

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    1. I am curious if your husband had a pneumonia vaccine. I have ALS. I recently asked for and the vaccine although doctors usually recommend them at age 65. I am thinking that this vaccine should be standard protocol when anyone is diagnosed.

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  5. No one can imagine, if they have not witnessed, what an als patient and their support system faces. You know tomorrow is not going to be better but we also know we have to enjoy every moment of today.
    My husband was diagnosed with aggressive als. Within 8 months he went from a strong healthy man to a man who could not walk, use his arms, hands nor speak.

    We must get funds for research to cure this disease or at least slow down the progression. THREE months of addition to life with no addition to quality of life is just not enough.

    We must get more research

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  6. I am the wife of a 35 year old man with ALS. We have had a hard battle so far. Without the use of his hands if he gets unsteady he just falls because he can’t catch himself. So he has several broken bones.
    I think one of the worse misjudged things the doctors told us was that ALS doesn’t hurt. They said it isn’t painful at all. I call BS on that one because he is in so much pain all the time.
    I want to ask if anyone has a bad time with mucus. Clear pasty sticky stuff. And is there anything that helps get rid of it? I have tried musinex, sudafed, Tylenol sinus, and numerous things.

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