http://www.alsindependence.com is dedicated to helping people with ALS.

ALS received its medical name in 1874 from the French neurologist Jean Martin Charcot. Charcot had observed the wasting away of a patient’s muscles (known medically as amyotrophy) and the scarring and hardening, or sclerosis, of the bundles of motor neurons running down each side (laterally) through the spinal cord. The disease is also named for Lou Gehrig, the famous baseball player who died in 1941 after developing the illness. Also know as Motor Neuron Disease, (MND).

http://www.alsindependence.com

Q. What is ALS?

A. ALS, sometimes called Lou Gehrig’s disease, is a rapidly progressivefatal neuromuscular disease. It is characterized by degeneration of a selectgroup of nerve cells and pathways in the brain and spinal cord, which leadsto progressive paralysis of the muscles. Generally there is littleimpairment of the brain, sight, touch, hearing, or smell.

ALS is the abbreviation for amyotrophic lateral sclerosis, which means:

A = absence of
myo = muscle
trophic = nourishment
Lateral = side (of spine)
Sclerosis = hardening or scarring

Q. ALS is a rare disease, isn’t it?

A. ALS is NOT a rare disease. Between 1,500 and 2,000 Canadians currently live with ALS. Two or three Canadians a day die of this devastating disease.

According to Statistics Canada, from 1994 to 1996 deaths due to ALS were 94% higher than death from cystic fibrosis, 70% greater than multiple sclerosis and only 35% less than AIDS victims. This means that twice as many people a year die of ALS than cystic fibrosis and multiple sclerosis combined.

‘ALS is clearly the most common cause of neurological death on an annual basis,’ Dr. Michael Strong, research scientist at the Robarts Research Institute, London, Ontario.

Q. How does one get ALS?

A. In the majority of cases the cause is unknown. In about 5-10% of cases there is a hereditary pattern. Research is being conducted in areas relating to genetic predispositions, viral or infectious agents, environmental toxins, and immunological changes.

Q. Who gets ALS?

A. ALS can strike anyone. ALS is not contagious, does not discriminate, and can strike at any age. The usual onset is between 55 and 65, but people under 20 have been diagnosed. ALS is usually fatal within three to five years of diagnosis.

Q. What are the early symptoms?

A. ALS usually becomes apparent either in the legs, the arms, the throat or the upper chest area. Some people begin to trip and fall; some lose the use of their hands and arms; some find it hard to swallow and some slur their speech.

Q. What are the effects of ALS?

A. Because ALS frequently takes its toll before being positively diagnosed, many patients are debilitated before learning they have contracted ALS. The disease usually does not affect the senses - taste, touch, sight, smell, and hearing - or the mind. ALS wreaks a devastating effect on patients as well as their families. As they cope with the prospect of advancing disability and death, it consumes their financial and emotional reserves. It is a costly disease in its later stages, demanding both extensive nursing care and expensive equipment.

Q. What can be done about ALS?

A. As there is no cure and very little in the way of treatment for ALS, the best way to ‘do something’ about ALS is:

To send donations of money that can be used to assist with services to P’ALS or to fund further research into finding the cure or treatments for ALS;

To offer personal time as a volunteer for the ALS Societies in the many areas where volunteers can help—e.g. raising public awareness, fundraising, assisting PALS and their families.

Q. Is there hope for people with ALS?

A. At the moment there is one medication that may prolong life minimally. Research is looking to find not only the cause of the disease so that a cure can be developed but also other medication or treatments that can help until a cure is found. With increased knowledge about ALS, healthcare providers and families can help PALS live life more fully. Good planning and social management can ease the burden for those who live with ALS.

Q. Are there different Classifications of ALS?

A. Yes, here is a list of classifications

Classic 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.

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