What is ALS?

What is Amyotrophic Lateral Sclerosis (ALS)?

Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig’s disease or classical motor neuron disease, is a rapidly progressive, invariably fatal neurological disease that attacks the nerve cells (neurons) responsible for controlling voluntary muscles.  In ALS, both the upper motor neurons and the lower motor neurons degenerate or die, ceasing to send messages to muscles. Unable to function, the muscles gradually weaken, waste away. Eventually the ability of the brain to start and control voluntary movement is lost.  Symptoms are usually first noticed in the arms and hands, legs, or swallowing muscles. Muscle weakness and atrophy occur on both sides of the body.  Individuals with ALS lose their strength and the ability to move their arms and legs, and to hold the body upright. When muscles in the diaphragm and chest wall fail to function properly, individuals lose the ability to breathe.  The disease does not affect a person’s ability to see, smell, taste, hear, or recognize touch.  Although the disease does not usually impair a person’s mind or personality, several recent studies suggest that some people with ALS may develop cognitive problems involving word fluency, decision-making, and memory.  The cause of ALS is not known, and scientists do not yet know why ALS strikes some people and not others.

What is the prognosis?

Regardless of the part of the body first affected by the disease, muscle weakness and atrophy spread to other parts of the body as the disease progresses. Individuals have increasing problems with moving, swallowing, and speaking or forming words. Eventually people with ALS will not be able to stand or walk, get in or out of bed on their own, or use their hands and arms. In later stages of the disease, individuals have difficulty breathing as the muscles of the respiratory system weaken. Although ventilation support can ease problems with breathing and prolong survival, it does not affect the progression of ALS. Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms. However, about 10 percent of those individuals with ALS survive for 10 or more years.

  1. My father aged 63 had a retina detached in Noov 2014. He underwent a couple of surgeries for the same. In March/April 15 we noticed his head was dropped.. He had poor control over neck while standing. He got thorough examinations done but nothing came out. He had been losing weight steadily. Complained about difficulty in eating dry food. In August he began to breath heavily. We tried alternate medication but no help.

    He had lost 20-25 kgs. Difficulty in walking. He could not lie down. He would be sitting in bed all night.High pulse 120.

    Again in Oct 15 he got admitted for tests. And was diagnosed MND ALS.

    He is on ventilator since then. I’m happy that at least he can breath now of course with ventilator support and can sleep.

    Waiting for help.

  2. Hi, I want to comment on the pain issue with ALS. I am in a lot of pain with this disease. I feel it in my legs, hips and feet a lot. I don’t know if everyone with ALS feels pain but I definitely do. Miki Rutter

    • Hi Miki,
      I’m glad that you’ve commented and left your email.
      I’m so sorry that you have been diagnosed with this terrible disease!
      I did experience pain in the legs and feet the first two or three years after being diagnosed. It was mostly severe muscle cramping. I found that staying hydrated really helped. I would also drink Gatorade when the pain became bad.

  3. I came across a very interesting article on newly researched rainforest plants and their potential use for fighting ALS among other diseases.


  4. The disease may limit you in the flesh, but there is a spiritual man in you that would put Sampson to flight – I am blessed by your ministry -Blessings Darrell

  5. So tough. I wonder if you read, “The Memory Chalet,” by Tony Judt. I found it to be incredibly moving and wrote a review of it for my blog. Prayers and thoughts and hugs are heading your way.

  6. I don’t know how this will sound, but here it goes. You had liked one of the post I wrote a little while back. So as I can I try and go through and read post by others who have liked mine. With that said, I had an accident 2 years ago that led to a tough infection and so forth. I have never been the same since. Something is so wrong and my doctors are having trouble figuring it out. I never could get full use of my left leg which was involved in the accident. Then I noticed it started getting weaker. Soon after, I started noticing weakness in my right leg. Not long ago, it moved into my arms. Now in the last week, it has gone to my face. To the point it is affecting my speech. I’m going to see a new neurologist with hopes of answers but can’t get in until the 13th. I just want to know what I am up against. I’ve prayed for God to guide me to answers on a daily basis. Right now, everything I try to research, leads back to a motor neuron disease. Today, I was led to read through your blog and had no idea you had ALS. It made me really have to take a moment. Whatever the doctors come up with, I know that this is ultimately between me and God. So I’m not afraid because I know He will give me strength. Just as He will help me put the pieces of this puzzle together.

    • I am so sorry to hear of your medical problems, Laurie. I hope and pray that it isn’t ALS! I remember waiting for my appointment to determine if I had ALS, the worrying, the fears etc. The nervous system is so complex that your problem could be a number of things; pinched or damaged nerves, MS and the list goes on and on. Please let me know the outcome.

      • Thank you for responding. And you are right. It could be a number of things. But given the complexity of the nervous system, I’m afraid it is going to take awhile. It’s hard when your body betrays you, as you know. Right now, it’s harder for me not knowing what I’m fighting. But it’s in God’s hands and that’s where I have to leave it. I will be praying for you. Are you in a lot of pain?

        • Thank you very much for your comments and for your prayers. Other than muscle cramps, there usually is no pain associated with ALS. If you’re experiencing pain in the areas you’re having weakness, I think that’s good news. If you are going to see a neurologist that works with ALS patients, he or she will be able to give you a firm diagnosis after completing a battery of tests. Please let me know the outcome – I’ll keep you in my prayers.

  7. Hi Bill,
    I’m very happy that you found my post about ALS so that it could lead me to your site. As with all of the people I work with, your spirit in the face of an ALS diagnosis is a beacon of hope.

    If I’m reading your dates correctly, it has been 17 years since your diagnosis so you have already beaten the odds!! Stay strong and have faith in those who are working hard to find the cure. It is people like you and your family that give us our drive.

    All my best,

    • Thank you, Stephanie. Most of the people that I know or have known with ALS have a good attitude; I believe this is at least partly due to the good attitude of the people, like you, that are working on their behalf. I was diagnosed in October of 1996 so it’s been almost 17 years.

  8. My Uncle Luke, who was a major league pitcher, suffered from ALS. My heart goes out to you, Bill. Your blog is a ministry to others. You show that you know that God is with you in this. Bless you!

    • Thank you, Alan. I was not an athlete, but for some reason a lot of athletes (compared to the general population) get ALS. Some speculate that it might be the fertilizer they put on the grass or maybe muscle strain from working-out.

      • Uncle Luke was married to one of my father’s sisters. All of his own siblings ( I forget if he had two or three) also had ALS. They lived in a small farming community in Nebraska. It could be from the same toxic exposure or some genetic connection. If the cause was clear, perhaps a cure would be available.

        • Yes, Uncle Luke had the familial type of ALS, which is about 10 percent of the cases. Fortunately I don’t have that type so I do not have to worry about my siblings or children getting it.

          • It is a big relief that you do not have the familial type. Uncle Luke had one son, who did not get ALS, nor his two sons, so it seems to have not been passed on.

          • I knew a woman (through the ALS message board) that had ALS and her dad, uncle and 4 siblings had all died of it, but, at that time, none of the children had ALS.

  9. It’s not a torn rotator. I had it in one shoulder and that healed and then this one started freezing. I just woke up one morning and that was that. I have done the exercises and have gotten most of my range of motion back but i still have some stiffness and areas where the tissue seems to be frozen. If you have any great exercises you can point me to I would try them .. I think I know them all though .. I’ll just keep at it .. Thanks 🙂

  10. How long did you have frozen shoulder. Mine is hanging on for 5 years now. I’m wondering if it will ever heal.

    • Five years!? Are you sure it’s a frozen shoulder? From what I understand, a frozen shoulder can be corrected with range-of-motion exercises; that’s how I got rid of mine and I continue to have my wife or caregiver do these prescribed exercises so it doesn’t happen again. Are you sure it isn’t a torn rotator cuff?

  11. Thank you, Bill. I am vaguely familiar with ALS. I read the book, “Tuesdays With Morrie” and learned quite a bit about the symptoms. I will be praying for you as well. What a blessing you can encourage others in the midst of what you are going through. Thank you so much for sharing your blog.
    God Bless,

  12. Hello,
    First let me say thanks for liking my blog post :). I was very moved by your devotion to God while enduring your illness. I have been praying for and walking through a frozen shoulder. While it is not life threatening it has robbed me of parts of my life. I understand too well how easy it is to get bitter and to ask God over and over “why me”. I also know the joy of knowing that he could heal and maybe chooses to or not and still love him. I too think about my perfect body in heaven. Thank you for your courage and devotion and faith and for putting into such eloquent words ..

  13. Thank you Bill, I didn’t know how controlling ALS was, do you have pain with this condition? if so I will give you the ingredients for God’s Balm ,which will give you much relieve if used in Faith.

    I was Born with Psoriatic Arthritis and Lupus and this has caused many health problems but God knows how much we can endure and I have also had much healing as I shared before.

    I continue to pray that your Dream Bill will soon be a reality – God bless you greatly.

    Christian Love from both of us – Anne

    • Thank you for your concern, Anne. Some people with ALS experience pain, but, other than occasional muscle cramps, I do not experience pain – thankful for that!
      I didn’t know that some people were born with Arthritis and/or Lupus; how terrible! I imagine you know a lot about pain, Anne. My wife has some arthritis in her finger joints; she would try mixing up some of your balm if you think it might help ease the pain and inflammation.

  14. Thank you Bill, I didn’t know how controlling ALS was, do you have pain with this condition? if so I will give you the ingredients for God’s Balm ,which will give you much relieve if used in Faith.

    I was Born with Psoriatic Arthritis and Lupus and this has caused many health problems but God knows how much we can endure and I have also had much healing as I shared before.

    I continue to pray that your Dream Bill will soon be a reality – God bless you greatly.

    Christian Love from both of us – Anne

    and Sheryl

  15. Bill, I was thinking about the word “terminal,” and then I remembered what Jesus said to the paralytic, “Take up thy bed and walk.” Also, I recalled reading about a girl who recovered from rabies, another “fatal” disease, a few years ago.

    Prayers going up to God’s Throne room on your behalf so that God may be glorified among your physicians and all who read your story. In Jesus name.

    I believe that we are living in the end times, during an outpouring of God’s Spirit. Reach out and touch the fringe of His garment (prayer shawl) like the woman with the issue of blood. Jesus Christ is the same yesterday, today, and forever.

    Love & blessings to you in the name of our Savior and Lord.

    • Thank you, Sheryl – that’s a great message! And, thank you very much for your prayers!

    • This comment reminded me that a family friend was healed of mad cow disease a few years ago. For months they didn’t know what was wrong with him and kept him in a coma. I know the human form has a different name, but the same warped proteins existed in his tissue (prions). He has a few residual issues but miraculously recovered in spite of the low odds, so I’m with Sheryl, I totally believe that God can turn this all around.

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