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Last updated fredag, 27 marts 2009
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| What is ALS/MND?Amyotrophic Lateral Sclerosis / Motor Neuron Desease The disease was identified and named in 1874 by a French physician, J.M. Charcot. The term "amyotrophic" refers to the muscle atrophy or muscle loss that occurs with ALS. "Lateral" refers to the location of affected nerves along each side of the spinal cord. "Sclerosis" refers to the hardened scar tissue that develops when nerve cells die. People or a Person with ALS are referred to as "PALS." Motor neurons, among the largest of all nerve cells, reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body with connections to the brain. When they die, as with ALS, the ability of the brain to start and control muscle movement dies with them. With all voluntary muscle action affected, patients in the later stages are totally paralyzed yet, through it all, their minds remain unaffected. Half of all affected live at least three or more years after diagnosis. Twenty percent live five years or more; up to ten percent will survive more than ten years. However, there is always the possibility that any nerve group and its accompanying muscle groups will be affected. Not all ALS patients are affected the same way. Some lose the ability to swallow, but continue to live fulfilling lives thanks to early peg tube placement. Tube feedings alleviates the stress of not being able to take in enough nourishment by mouth. Others lose functional movement, but are able to speak and to eat. Losing the ability to effectively breathe on one's own is what causes people to die from ALS. Some people make the decision to receive mechanical ventilation, thereby prolonging their lives. Others use non-invasive ventilation, such as bi-pap, which helps their air exchange, and gives their diaphragm a rest for part of the day, and enables them to feel more energetic while not using mechanical ventilation. The Classifications Of ALSClassic sporadic-Sporadic a progressive neurological disease characterized by a deterioration of upper and lower motor nerve cells (neurons). This type of ALS affects over two-thirds of all people with ALS. Familial a progressive neurological disease that affects more than one member of the same family. This type of ALS accounts for a very small number of people with ALS in the United States (5-10%). Primary lateral sclerosis (PLS) a progressive neurological disease in which the upper motor nerve cells (neurons) deteriorate. If the lower motor neurons are not affected within two years, the disease usually remains a pure upper motor neuron disease. This is the rarest of all forms of ALS. Progressive bulbar palsy (PBP) a condition that starts with difficulties speaking, chewing and swallowing due to lower motor nerve cell (neuron) deterioration. This disorder affects about 25% of all people with ALS. Progressive Muscular Atrophy (PMA) a progressive neurological disease in which the lower motor neurons deteriorate. If the upper motor neurons are not affected within two years, the disease usually remains a pure lower motor neuron disease. Mariana Island form The Mariana Island form is a rare form of ALS described in Chamorro Indian patients from Guam. What is the future? Information for this article was taken from:
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People or persons diagnosed with ALS/MND will be referred to as "PALS" , with the genetic form as "FALS" Persons who helps or works as carer will be referred to as "CALS". Send e-mail to
webmaster@nordic-als.info with questions or comments to this
Website.
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