Sound Mind, Broken Body.....What is ALS?

Picture above his grandfather's desk in dining room
Picture above his grandfather's desk in dining room

Broken Body

You could see the tears in his eyes as his oldest grandson walked into his room at the nursing home. The last time he saw him, he was only twelve. Now, he was a man, all grown up. You could see his eyes follow him as he walked across the room to greet him. The only indication of a smile was a gleam in his eyes, behind his tears. It was the sign of recognition, as his grandson spoke to him and gave him a hug and kiss. Cole leaned back down again, and lifted his grandfather's frail body, to prop him up on his pillows. He had slumped down in his bed, and was unable to push himself into an upright position.

Mind and Body: Separate

Can you imagine having a strong, sound mind? Yet, your body no longer receives messages from your central nervous system. It no longer takes directions from you. Can you imagine the emotional distress of not being able to tell your spouse, children, or grandchildren you love them? You are incapable of speech, or it is inaudible. Can you imagine not being able to give your children or grandchildren a simple little kiss on the cheek, because the muscles in your face will not allow you to properly close your mouth to pucker for a kiss? You have all of your faculties of mind. However, you can't swallow properly, you can't speak, you can't hold a cup of coffee, walk or even dress yourself. This separation of mind and body is a disease known as ALS(Amyotrophic Lateral Sclerosis), also known as Lou Gehrig's disease.

What is ALS?

ALS is a disease that causes degeneration of the nerves which control muscle movement. It attacks the nerve cells in the brain and spinal cord. ALS is an incurable fatal neuromuscular disease. Muscles progress to weakened states and eventually results in paralysis. French neurologist, Jean-Martin Charcot first depicted this disease in 1869. However, it gained national and international attention in 1939. During this year, Lou Gehrig was diagnosed with the disease, and retired from baseball.

Symptoms

  • Loss of muscle strength
  • Loss of coordination
  • Difficulty swallowing (usually first muscles affected)
  • Difficulty breathing
  • Muscle cramps
  • Speech, slow or abnormal
  • Voice change, hoarseness
  • Head drop, weak spinal or neck muscles

Additional Symptoms Associated With ALS

  • Muscle Spasms
  • Weight Loss
  • Muscle Contractions
  • Ankle, feet, and leg swelling
  • Drooling

Muscles are affected. However, it doesn't affect the senses (smell, taste, hearing, sight, or touch), bladder or bowel functions or even the ability to think or reason. Thus, separating mind and body.

Treatment

There is no cure for ALS. In recent years, they have discovered a drug treatment for ALS. However, it only prolongs the person's life. The drug can't stop the disease, and doesn't reverse the damage already done. The drug only controls the symptoms.

Choking is common in ALS patients. Most decide on a feeding tube known as gastrostomy. It has been discovered the illness increases the need for food. Due to the limited ability to swallow, this is why most choose the feeding tube.

Types

  1. Sporadic-This is the most common in the United States. Out of all the cases, this is the largest group. It affects 90% to 95% of the cases.
  2. Familial-This affects 5% to 10% of all cases. This one occurs more than once in a family lineage.
  3. Guamanian-This one occurred in the 1950's. A large amount was observed in Guam and the Trust Territories of the Pacific during this time frame.

Tests

ALS is very difficult to diagnose. However, not one test can diagnose the disease. It sometimes takes a battery of tests to rule out other possibilities.

  • Exam of nerves and muscles shows weakness.
  • Reflexes abnormal
  • Spinal tap
  • Genetic testing (only if family history)
  • EMG (check nerves to see which ones are not working properly)
  • Blood tests
  • Breathing test (to see if lung muscles affected)
  • Swallowing studies

Prognosis

The patient loses their ability to care for oneself. Life expectancy is cut short. Death usually occurs within 3 to 5 years of diagnosis. Only 20% of those diagnosed with the disease survive more than 5 years.

Statistics

In the United States, 5600 people are diagnosed with ALS every year. This means 15 new cases everyday. Statistics show an estimated 300,000 at any time have ALS. ALS attacks most people between the ages of 40 and 70 with 55 being the average age. The ALS CARE Database shows 93% of the patients are Caucasian and 63% with ALS are men.

Information

There are only 34 ALS Association Certified Centers throughout the United States. Most states do not have a Certified Center, Chapter, or Support Group. The state in which I live only has one clinic, and one doctor who specializes in this disease. This may be some indication of why most cases are misdiagnosed or difficult to diagnose. We need to create an awareness of this fatal disease, and offer our support to find a cure. If you would like to learn more about this disease, centers, chapters, or support groups in your area follow this link: www.alsa.org

In memory of Willis A. Smith.

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Comments 6 comments

Direxmd profile image

Direxmd 6 years ago from Sonoma County, California

Very interesting Hub Proudmamma, I'm deeply sorry for your recent loss...

Thank you for posting useful information on this very cryptic disease... I hope we can find a cure soon, and I hope this hub will spread awareness of ALS

Best regards,

-Direxmd


technorican profile image

technorican 6 years ago from Houston

My younger sister died of ALS last year. She was 52 years old and a fitness trainer. She didn't want to be a mind trapped in a body. It is a horrible disease.

Lyme disease and babesiosis mimic ALS and MS. The standard Lyme disease is NOT sufficient. Get the Western Blot test ASAP and have it sent to a respected lab such as iGeneX. My sister tested positive for babesiosis. There was some improvement with the treatment for a while but she had already lost use of her body by then.


proudmamma profile image

proudmamma 6 years ago Author

Technorican, thank you for the useful information. I will check into this.


Peanutritious profile image

Peanutritious 4 years ago from Cheshire, UK

I have never heard of ALS but thanks for providing us with such useful information. It is tragic to imagine how painful this must be for the sufferer and their loved ones to cope with. A dear friend of mine was diagnosed with Motor neurone disease a year ago and is rapidly deteriorating. She is a wonderful human being and to see her like this breaks my heart. She is only 53 too.


proudmamma profile image

proudmamma 4 years ago Author

It truly is tragic to watch a sick loved one suffer. Thank you for stopping by to read my hub. Best wishes to you and your friend.


conradofontanilla profile image

conradofontanilla 4 years ago from Philippines

I have a HUB "How to Treat Motor Neuron Disease Caused by Free Radicals.

I am hopeful that countering free radicals and reactive oxygen species and treatment with stem cell therapy can restore to normalcy.

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