What is ALS?
 Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's disease," is a progressive neurodegenerative disease that attacks nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually lead to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With all voluntary muscle action affected, patients in the later stages of the disease become totally paralyzed. Yet, through it all, for the vast majority of people, their minds remain unaffected.
A-myo-trophic comes from the Greek language. "A" means no or negative. "Myo" refers to muscle, and "Trophic" means nourishment---"No muscle nourishment." When a muscle has no nourishment, it "atrophies" or wastes away. "Lateral" identifies the areas in a person's spinal cord where portions of the nerve cells that nourish the muscles are located. As this area degenerates it leads to scarring or hardening ("sclerosis") in the region.
As motor neurons degenerate, they can no longer send impulses to the muscle fibers that normally result in muscle movement. Early symptoms of ALS often include increasing muscle weakness, especially involving the arms and legs, speech, swallowing and breathing. When muscles no longer receive the messages from the motor neurons that they require to function, the muscles begin to atrophy (waste away). Limbs begin to look "thinner" as muscle tissue atrophies.
As the weakening and paralysis continue to spread to the muscles of the trunk of the body the disease, eventually affects speech, swallowing, chewing and breathing. When the breathing muscles become affected, ultimately, the patient will need permanent ventilatory support in order to survive.
For the vast majority of people, their mind and thoughts are not impaired and remain sharp despite the progressive degenerating condition of the body.
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How Did We Get Involved?
Jane, the Marketing Director at Aquarius Pools & Spas, lost her brother to ALS in March 2005, less than one year after he was diagnosed.
"There are few, if any, of my childhood memories that don’t involve my brother James. From learning to ride a bike, to playing sports, to buying my first car, James was there. He pulled my toboggan up snowy hills, and let me ride on the back of his dirt bike in the summer.
He taught me to play monopoly and backgammon. We raced slot cars and Matchboxes and played with GI Joes. He showed me plenty of how to get into trouble, and a little of how to get out of it!
My brother was diagnosed with ALS in March 2004. He was the healthiest, strongest guy I knew. He had 6 pack abs and Popeye muscles. Within 3 months of his diagnosis he could no longer carry a gallon of milk or walk without a walker. Within 8 months he was confined to a wheel chair. Within 12 months he died at the young age of 41.
If I could wave a magic wand and bring him back, I wouldn't if it meant he'd still have ALS. This is the most evil disease I have ever seen. It robs a person of all muscles, but mercilessly leave the brain fully functioning. It has been described as being buried alive.
In 2004 I formed a team to walk in honor of my brother at the annual Walk To D'Feet ALS. My team, Team Sled-Dog, had 33 walkers and raised over $14,000 for ALS research. We were the number one team and James was given a special acknowledgment.
In 2005, Team Sled-Dog had 15 walkers and raised over $7,000 for ALS research and came in third place!
In 2006, Team Sled-Dog took first place again, with 13 walkers raising almost $5,000!
Team Sled-Dog marches on . I remain committed to seeing a cure for ALS in my lifetime! If you would be interested in sponsoring Team Sled-Dog (or walking with us) in our 2007 Walk To D’Feet ALS please contact me at 603-743-3210. All donations are fully tax deductible.
Thank you!"
Jane
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James & Jane, 2004 Walk
Team Sled-Dog, 2005
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Team Sled-Dog, 2006
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| Facts about ALS |
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The onset of ALS is insidious with muscle weakness or stiffness as early symptoms. Inevitable progression of wasting and paralysis of the muscles of the limbs and trunk as well as those that control vital functions such as speech, swallowing and breathing follows.
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In most cases, mental faculties are not affected. Also, ALS is not contagious.
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It is estimated that ALS is responsible for nearly two deaths per hundred thousand population annually. More people die every year of ALS than of Huntington's disease or multiple sclerosis.
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A little over 5,000 people in the U.S. are diagnosed with ALS each year. The incidence of ALS (two per 100,000 people) is five times higher than Huntington's disease and about equal to multiple sclerosis. It is estimated that as many as 30,000 Americans may have the disease at any given time.
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The life expectancy of an ALS patient averages about two to five years from the time of diagnosis. Half of all affected live more than three years after diagnosis.
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ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries.
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ALS can strike anyone. Someone you know or love will die from ALS unless a cure or prevention is found.
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The financial cost to families of persons with ALS is exceedingly high. It is estimated that in the advanced stages, care can cost an average of $200,000 a year. Patients' and relatives' entire savings are quickly depleted because of the extraordinary cost involved in the care of ALS patients.
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What Can You Do to Help?
Donate money!
There are many organizations which are deserving of your donation. Here are a few of my favorites:
Donate time.
Volunteer for advocacy events, and fundraisers in your community. Find a chapter in your area.
Donate equipment.
Do you have a wheelchair not in use? A shower chair? Contact the ALSA about making a durable equipment donation.
Get involved in advocacy.
Knowledge is power. The more we know, the more we can effect change.
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