ALS - Experience

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What is amyotrophic lateral sclerosis?

Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig's disease, is a rapidly progressive, invariably fatal neurological disease that attacks the nerve cells (neurons) responsible for controlling voluntary muscles. The disease belongs to a group of disorders known as motor neuron diseases, which are characterized by the gradual degeneration and death of motor neurons.

Motor neurons are nerve cells located in the brain, brainstem, and spinal cord that serve as controlling units and vital communication links between the nervous system and the voluntary muscles of the body. Messages from motor neurons in the brain (called upper motor neurons) are transmitted to motor neurons in the spinal cord (called lower motor neurons) and from them to particular 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 (atrophy), and twitch (fasciculations) . Eventually, the ability of the brain to start and control voluntary movement is lost.

ALS causes weakness with a wide range of disabilities (see section titled "What are the symptoms?"). Eventually, all muscles under voluntary control are affected, and patients lose their strength and the ability to move their arms, legs, and body. When muscles in the diaphragm and chest wall fail, patients lose the ability to breathe without ventilatory support. Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms. However, about 10 percent of ALS patients survive for 10 or more years.

Although the disease usually does not impair a person's mind or intelligence, several recent studies suggest that some ALS patients may have alterations in cognitive functions such as depression and problems with decision-making and memory.

ALS does not affect a person's ability to see, smell, taste, hear, or recognize touch. Patients usually maintain control of eye muscles and bladder and bowel functions, although in the late stages of the disease most patients will need help getting to and from the bathroom.

Return to Amyotrophic Lateral Sclerosis (ALS)

See what others are saying

Comment from: Cheryl W, 55-64 Female (Caregiver) Published: October 15

My friend was diagnosed with bulbar ALS in the summer of 2012; she passed away in September 2013. Her initial symptoms were quite noticeable. She first experienced weakness in her right arm and her speech and swallowing abilities were profoundly affected. She did little to seek help for this disease, as she had been her brother's caregiver a few years earlier for the same disease.

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Comment from: CATMC, 65-74 Female (Caregiver) Published: May 13

My mom was given the news that she has ALS, by the doctor that performed the nerve testing a week ago. He wasn"t very good at it so I don"t think he usually does it. He asked her to return to her primary neurologist without giving us any more information. I have been doing a lot of reading without really knowing what I was looking at. I believe it to be the bulbar palsy with some weakness in limbs, but we go back next week to find out for sure. If I read it correctly, having significant limb involvement with this type is very rare. Hoping he will send us to a clinic.

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