Here is a preview of how I was thinking about the tone of the document, where you see the #1 and 2 will be footnotes:
ALS
An all inclusive guide that does not cover nearly enough
When a medical professional suggest to an individual or DR Google diagnosis you with ALS, most likely the first thing that you do is run to your favorite web browser to try and learn more. From my experience and the experiences of many of us with the illness and those that care for us, what you read will be mostly useless tripe.
ALS, goes by several names the two most common are MND, or Lou Gehrig's disease. I do not like the Lou Gehrig's title as it somehow implies that he was the first with this illness or that in some way he was more important than the rest of us who suffer from it. Lou was a baseball player and I suppose the reason he became synonymous with ALS is because the world got to view him waste away, -the same as countless numbers of us have, only without the attention he received. I don't blame Lou, I just don't like the name.
When searching for ALS you will find that is is: "Amyotrophic lateral sclerosis (ALS) is a group of rare neurological diseases that mainly involve the nerve cells (neurons) responsible for controlling voluntary muscle movement. Voluntary muscles produce movements like chewing, walking, and talking. The disease is progressive, meaning the symptoms get worse over time. Currently, there is no cure for ALS and no effective treatment to halt, or reverse, the progression of the disease.
ALS belongs to a wider group of disorders known as (MND)motor neuron diseases, which are caused by gradual deterioration (degeneration) and death of motor neurons. Motor neurons are nerve cells that extend from the brain to the spinal cord and to muscles throughout the body. These motor neurons initiate and provide vital communication links between the brain and the voluntary muscles.
Messages from motor neurons in the brain (called upper motor neurons) are transmitted to motor neurons in the spinal cord and to motor nuclei of brain (called lower motor neurons) and from the spinal cord and motor nuclei of brain to a particular muscle or muscles.
In ALS, both the upper motor neurons and the lower motor neurons degenerate or die, and stop sending messages to the muscles. Unable to function, the muscles gradually weaken, start to twitch (called fasciculations), and waste away (atrophy). Eventually, the brain loses its ability to initiate and control voluntary movements.
Early symptoms of ALS usually include muscle weakness or stiffness. Gradually all muscles under voluntary control are affected, and individuals lose their strength and the ability to speak, eat, move, and even breathe.
Most people with ALS die from respiratory failure, usually within 3 to 5 years from when the symptoms first appear. However, about 10 percent of people with ALS survive for 10 or more years."1
If you made it through that quote then the rest of what you will read will sound like what Gary Simpson of the Far Side described a dog hears when its master is talking to it:
(see cartoon image)
Only what we hear is "blah, blah, DEATH, blah, blah, blah, 3-5 years, blah, blah, blah, blah, blah, blah, NO CURE,
While technically this and other descriptions of ASL may be correct they are far from what the PALS (Person with ALS) and CALS (Caregiver of the individual with ALS) go through while enduring what so many of us call the Monster.
This "all inclusive" but "no where near thorough" guide will be developed from the point of view of those who have this horrific illness and those who suffer, perhaps even more so, their caregivers. The contributors are my friends from the ALS Forum2 and while each of us works through this journey differently we all also do so with our own take on how to cope. With their help I hope to capture their courage and strength to help you my dear reader who is facing a terrible quest, where the only riches to be found at the end are those of being released from pain and suffering.
