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Lou Gehrig’s Disease - Amyotrophic Lateral Sclerosis

Updated on April 19, 2020
Pamela99 profile image

After 22 years as an RN, I now write about medical issues and new medical advances. Diet, exercise, treatment, and lifestyle are important.


Facts about Lou Gehrig’s Disease

Fifteen new cases of Lou Gehrig’s disease, which is Amyotrophic Lateral Sclerosis (ALS), is diagnosed daily in the US. ALS is a progressive neurodegenerative disease, and it affects the nerve cells of the brain and spinal cord. This disease causes patients to slowly lose the ability to move, speak, eat or even breathe. The average life expectancy after this diagnosis is from 2 to 4 years, although 10% may live 20 or more years.

The motor neurons begin in the brain, then reach the spinal cord before reaching the muscles. The motor neurons progressively degenerate with ALS. When the motor neurons die, the brain is no longer able to initiate or control muscle, so there is no voluntary movement in the arms and legs. There is no cure for ALS.

MRI with the Diagnosis of ALS

MRI with increased signal in the posterior part of the internal capsule that can be tracked to the motor cortex, consistent with the diagnosis of ALS
MRI with increased signal in the posterior part of the internal capsule that can be tracked to the motor cortex, consistent with the diagnosis of ALS | Source

Types of ALS

There is no known cause of this disease for 90-95% of the people. Scientists believe that genetic and environmental factors are involved. The remaining 5-10% of cases are familial, which means inherited. The children that are born from parents that have this disease have a 50% chance of inherited the gene mutation and may develop ALS.

ALS can occur at any age but typically does not occur until ages 40 to 70. The familial disease may occur at age 50. More white people are affected than blacks. In Europe, this disease affects 2-3 people per 100,000 annually. Numbers are unclear for much of the world. Military vets also develop ALS at a higher rate regardless of the branch of the military where they served, and it does not matter whether they served during a war or during or peacetime.

Lou Gehrig - New York Yankees


History of Lou Gehrig’s Disease

Charles Bell described this disease in 1824. Jean-Martin Charcot, a French neurologist, discovered the disease in 1869. He was the first one to call this disease amyotrophic lateral sclerosis as he noted the connection between the symptoms and neurological problems.

This disease became known in the United States when Lou Gehrig developed this disease in 1939. Since Lou Gehrig was a well-known first baseman for the NY Yankees with an excellent hitting record, and he was known as ‘The Iron Horse’ so people knew him and cared about his life. He was diagnosed at 36 and died at age 38. Then, Stephen Hawking developed this disease in 1963.

Lou Gehrig Disease


I might have had a tough break, but I have an awful lot to live for.

-- Lou Gehrig

Symptoms and Treatment of ALS

Initially, symptoms of ALS are barely detectable. The initial characteristics are stiff muscles, muscle twitching, then, a gradually worsening muscle weakness. This is a difficult disease to diagnose and may take several months or even years.

While there is no cure, there are treatments to improve the symptoms, which is the goal at this time even though advances have been achieved. Riluzole is a medication used to extend the life of the patient by a few months.

Early symptoms of ALS:

  • Coordination and strength of the arms and legs may be the first symptoms.
  • Fatigue and weakness in the feet and ankles is another early symptom.
  • The muscles of the arms, tongue, and the shoulders may twitch or cramp.
  • Speaking, swallowing and breathing may become strained.

The patient may end up on non-invasive ventilation that will extend life for a period of time and have a feeding tube for nutrition. While these things may help the disease will continue to progress. Ultimately, most patients die of respiratory failure.

The Mayo Clinic lists the following possible symptoms:

  • Muscle cramps and spasms
  • Spasticity
  • Constipation
  • Fatigue
  • Excessive salivation
  • Excessive phlegm
  • Pain
  • Depression
  • Sleep problems
  • Uncontrolled outbursts of laughing or crying

Diagnosis and Treatment of ALS - Mayo Clinic

Studies Used to Reach a Diagnosis

Various medical tests may be conducted to differentiate this disease with other neurological diseases:

  • Electromyogram (EMG) - a test to check for electrical activity in the muscles
  • Nerve conduction test, which checks for the nerve's ability to send messages to the muscles
  • MRI to get detailed images of the brain and spinal cord
  • Urine and blood tests to look for abnormalities
  • Spinal tap to get a laboratory analysis
  • Muscle biopsy to rule out other diseases

Breathing care is a concern, and some people end up with a tracheostomy, Physical, occupational and speech therapy are treatments that may help the patient. Psychological and social support can help with financial problems, insurance issues, getting the appropriate equipment and emotional support may all be provided.

Slowing the advancement of this disease with medications is the only treatment at this time, but there is a vast amount of research ongoing, which hopefully will find a cure.

Treatment and Research News

Whie riluzole slows the progress of the disease, it is expensive. Spasticity may be controlled with baclofen and diazepam, but the available treatments for this disease does not reverse the damage.

Scientists seek to understand the exact mechanism that causes the motor neurons to degenerate. Research at this time have found a variety of cellular defects, which depend on the exact gene mutation. Another recent discovery shows the cells of the nervous system (glial support cells and inflammation cells) also play an important role in ALS. The ALS Association is support stem cell research using blood and skin cells.

Jingsong Zhou, a professor of kinesiology at the University of Texas, is investigating a new approach to ALS. Recently, she was awarded a $2.88 million award from the NIH to support her work that preserves the mitochondria, the way it works or dysfunctions in a diseased cell. She believes this disease affects the physiology of the whole body. Zhou is searching for the reason cells are damaged, then she hopes to test potential therapies or compounds.

Lou Gehrig's Disease (ALS): Progress and Promise in Stem Cell Disease

How to Cope with ALS

There are a few things you can do as a patient to help accept this diagnosis and live the life you have to the fullest extent.

  1. Time to Grieve - The news that you have ALS, which is a fatal disease, if very difficult for you and your family. A period of mourning is appropriate.

  2. Try to think beyond the physical changes as you can still lead a rewarding life despite the limitations.

  3. Remain hopeful - Having a healthcare team will help you focus on healthy living throughout the course of this disease. Patients sometimes live 10 or more years, so maintain an optimistic outlook to improve the quality of your life.

  4. Join an ALS support group as talking with others that have ALS can relieve some of the anxiety. There are also support groups for family members.

ALS is a difficult disease, and it is difficult to hear you have a disease that is so debilitating and has no cure. The research is ongoing throughout the world, and many researchers are looking for a cure. They have made progress.

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

© 2019 Pamela Oglesby


Submit a Comment
  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    14 months ago from Sunny Florida

    Hi Linda,

    I am sorry to hear about your mother. This is a very difficult disease for the patient and the family. I agree that we need a majr breakthrough. I hope the newer researh will make a big diference. I apprecite your comments.

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    2 years ago from Sunny Florida

    Hi Pauls, That is a heart-breaking memory about your brother-in-law. This certainly is an awful disease to see in someone you love, and I sure hope for a cure also.

    I have never had anyone close to me die of this disease. I have read so much about this disease as an RN, and I don't even want to think of someone suffering in this way. I have enormous respect for the scientist researchers that work to find cures for some of this awful disease.

    Thank you, Paula, for sharing your experience, and you are right about people supporting this worthy causes. Peace for you Paula.

  • fpherj48 profile image


    2 years ago from Carson City

    Pam....I can't help but be brought back to such a terrible and heart-breaking time in my family's life. One of the sweetest, most loving men I've ever known, my brother-in-law, ultimately succumbed to this dreaded illness just a few years ago. (*We all still miss him very much)

    He was so brave, Pam, while I can recall being tortured by witnessing the progressive failing of this once strong, hard-working and active man. Tears well up in my eyes even now.

    In fact, I have known a few people who have had to struggle through this wretched disease. A classmate of mine as well his younger sister, both who are now deceased.

    Yes, for certain, Pam is time for a cure. We have several monstrous illnesses that require a cure. Here's to Medical Science and all the dedicated scientists, researchers & other medical personnel who tirelessly continue to work on such cures. There is something each and every one of us can do in terms of supporting the numerous fund-raisers that are so important in creating the cash flow necessary in these worthy causes.

    Thanks for this wonderful article, Pam. Peace, Paula

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    2 years ago from Sunny Florida

    Hi Maria, Living 30 years after this diagnosis is excellent, and with this lady being your mentor makes it very personal. ALS is a horrid disease, and I have compassion for anyone dealing with this disease.

    Thank you so much for your comments.

    Love, Pam

  • marcoujor profile image

    Maria Jordan 

    2 years ago from Jeffersonville PA

    Dear Pamela,

    I am so blessed to have known one of the 10% of people with ALS - my mentor and guide, Mariah Fenton Gladis, who lived a beautiful and inspiring life for over 30-years after her diagnosis.

    Thank you for raising awareness of this disease, especially the positive coping methods.

    Love, Maria

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    2 years ago from Sunny Florida

    Hi Prasetio, I am so happy to see you as it has been a long time. I am glad you learned some new information from this hub. I always appreciate your comments.

  • prasetio30 profile image


    2 years ago from malang-indonesia

    Very informative hub. Thanks for sharing. I learn much from this hub. God bless you .

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    2 years ago from Sunny Florida

    Hi Nell, I appreciate your kind comments. Have a good day!

  • Nell Rose profile image

    Nell Rose 

    2 years ago from England

    Its a horrible disease. And your information is very detailed and good for anyone needing to know about it.

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    2 years ago from Sunny Florida

    Hi Audry, This is a horrible disease. I really loved being a nurse for my career. Thank you for your comments.

  • vocalcoach profile image

    Audrey Hunt 

    2 years ago from Pahrump NV

    This is a terrible disease. It breaks my heart to think that anyone should suffer through these symptoms. Thank you for addressing this disease and providing such an informative article.

    Bless you, for being a nurse!

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    2 years ago from Sunny Florida

    Hi Linda, I am sorry to hear about your mother. I don't understand how Stephen Hawkins lived so long, other than the fact that he was diagnosed with a juvenile form of ALS initially.

    Just yesterday I watched a YouTube video of a man who had lived a number of years. He took a massive amount of vitamins, particularly ones that support the nervous system. He had his mercury fillings removed and felt a little better. He also used meditation and positive thinking. His symptoms are minor considering he had the disease for a number of years. I'm not sure what we could learn from this, but I agree it is time for a cure. Thanks for sharing your experience Linda, and I appreciate your comments.

  • AliciaC profile image

    Linda Crampton 

    2 years ago from British Columbia, Canada

    ALS can be a horrible condition. My mother died from the disease. As you say, some people can live a long time with the condition, but many people don't. Stephen Hawking is an inspiration, though he may have had a rare form of the disorder. I wish we understood how he was able to survive so long with ALS.

    I find it very frustrating that although my mother died a long time ago, treatments for the disease haven't improved significantly. I hope the research that you mention provides helpful information about the illness soon. A major breakthrough in our knowledge is badly needed.

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    2 years ago from Sunny Florida

    Hi Pop, I would not want that title, but each to their own I guess. It is heartbreaking that he and I imagine his family suffered for such a long time.

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    2 years ago from Sunny Florida

    Hi Bill, I agree with you completely. I hope there is some news soon concerning a cure. Thanks for your comments Bill.

  • breakfastpop profile image


    2 years ago

    At the time he was the longest living patient with the disease. He had an amazing will to live.

  • billybuc profile image

    Bill Holland 

    2 years ago from Olympia, WA

    This is one of what I like to call "ugly diseases." There is nothing good about it, no good news, no real hope, just a long, slow descent into hell on Earth. Great information about an ugly topic, Pamela.

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    2 years ago from Sunny Florida

    Hi Pop, That is certainly a horror story. Patents don't typically live that long, but obviously some do. Thanks for stopping in and commenting.

  • breakfastpop profile image


    2 years ago

    This is a horrible disease. I knew someone who lived with disease for over 15 years. He could only move one finger by the time he died.

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    2 years ago from Sunny Florida

    Hi Peggy, You have seen the horrible effects of this disease on the victim and family, and it has to be horrible for all. I could not find a reason why military veterans had a little higher risk. I will be glad when they have this disease figured out and have a cure too. I appreciate all of your comments.

  • Peggy W profile image

    Peggy Woods 

    2 years ago from Houston, Texas

    We have personally known two people who have died of this horrific disease. One of them lived in another state at the time, so we did not see him when the ALS ravaged his body. The other person lived here in Houston, so we did see the effects on not only him but the toll it took on his family as well.

    That is curious why people in the military, whether they served in war zones or not, are affected more than the general public.

    I hope that someday a cure is found.

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    2 years ago from Sunny Florida

    Hi Lorna, For a patient and family members hearing they have this disease would be horribly stressful. I was glad to read about all the research, and that they were researching some new possibilities. Thank you so much for your comments.

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    2 years ago from Sunny Florida

    Hi Lori, It sounds like you know the horrors of this disease better than many people. Thank you for your kind comments and sharing your experience.

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    2 years ago from Sunny Florida

    Hi Flouish, I think this disease is so difficult, and your neighbors maybe had some trouble dealing with the father's impending demise. I appreciate your comments.

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    2 years ago from Sunny Florida

    Hi Eric, Yes, prevention is always better. I agree that dementia is awful, and I am grateful for science as well. I pray for a cure for this disease. Thank you for your great comments.

  • Lorna Lamon profile image

    Lorna Lamon 

    2 years ago

    Hi Pamela, This is a really informative and interesting article. What a cruel disease and so debilitating. It must be so difficult for people to receive a diagnosis for this disease and for their family members to cope. It is good to know that research is on-going and appears to be well funded. Thank you for sharing Pamela.

  • lambservant profile image

    Lori Colbo 

    2 years ago from United States

    You did an excellent, very professional job on this article. ALS is a heartbreaking disease. I have seen Lou Gehrig's movie, with Gary Cooper playing him (can't think of the name of the movie), and I recently saw an old 70's TV movie based on a real case. It made me realize how helpless this disease must make patients feel. I pray they will find a cure soon. I have a friend who's husband has it. It's been a long battle.

  • FlourishAnyway profile image


    2 years ago from USA

    What a cruel disease. It’s hard to hear be hopeful and positive I’m sure when you’ve been given a diagnosis of a fatal disease. A neighbor had this growing up (the father) and he went downhill quickly. I wish I had understood more at the time so we could have been more helpful but they just shut themselves off from others more or less.

  • Ericdierker profile image

    Eric Dierker 

    2 years ago from Spring Valley, CA. U.S.A.

    Pamela you report the facts. And your reporting reveals your compassion. You are an RN of the highest order.

    In my nutrition work we are trying so hard to get folks ahead of the curb and into, not prevention, but boosting by every means our neurological systems. Dementia is a mental form for so many and so sad as it is not seen.

    Can we beat this? Well yes we can. We get causes and effects. My doc would notice the early signs in a heartbeat. And no reversing but a good maintenance.

    I love God and I love science, so glad God made science.

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    2 years ago from Sunny Florida

    Hi Liz, It is a neurological disease like MS, but this disease is worse in that it is fatal after just a few years. It may be referred to as ALS in England, as I think Lou Gehrig's disease is used more in the US. I think not having heard of this disease is not a bad thing as it is never a happy story. I appreciate your comments.

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    2 years ago from Sunny Florida

    Hi Linda, I am sorry to hear about the pastor. This is truly a heartbreaking disease. I don't think a lot of people know much about this disease. I have a friend who's father got this disease several years ago and he did not live that long.

    I sure hope for a cure also. I appreciate you sharing your experience with this disease.

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    2 years ago from Sunny Florida

    Hi Todd, Your statement is so true, but wouldn't choose this disease if we actually had a choice. Thanks for your comments.

  • Eurofile profile image

    Liz Westwood 

    2 years ago from UK

    I have not heard of this disease.Is it similar to multiple sclerosis? You give a detailed explanation.

  • Carb Diva profile image

    Linda Lum 

    2 years ago from Washington State, USA

    Pamela, next to Alzheimer's this is perhaps the saddest of diseases. It strikes people who are/should be in the prime of their lives. The pastor at our parochial high school was diagnosed one year ago. He was noticing difficulty in pronouncing some words; at times his speech was slurred. He's only 42 and has 5 children. The littlest is only 5.

    Although he was still able to function on campus and in the classroom Jim resigned from his position so that he could spend as much quality time as possible with his family rather than in his office preparing lesson plans and grading papers.

    How sad for a pastor to lose his ability to speak. I hope with all my heart that research can lead to a cure for this devastating sickness. Thank you for improving our awareness of a condition that maybe do not know about.

  • Wesman Todd Shaw profile image

    Wesman Todd Shaw 

    2 years ago from Kaufman, Texas

    Had an uncle who died of it just a few years ago. I didn't really know him very well, but he had played a big part in my dad's life. Guess something is going to get us all, and we don't really much get a choice in it.


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