Frequently Asked Questions about Steven Shackel, his symptoms, time of onset, improvement, etc. see My Diagnosis.

(ALS) Amyotrophic Lateral Sclerosis or (MND) Motor Neurone Disease
are referred to as ALS/MND.
PALS is short for People (or a person) with ALS.

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Before reading further please note that statistics
and accepted "facts" about ALS/MND can often
be misleading, as explained here...

Although patients diagnosed with ALS/MND are usually told they have an untreatable and usually fatal illness, neurologist Walter Bradley, head of the Kessenich Family MDA/ALS Center at the University of Miami, reminds us that  "About 40 percent of patients live more than five years, 20 percent live more than 10 years, and perhaps 5 percent to 10 percent of patients live more than 20 years. In about 5 percent of patients, the disease seems to burn itself out and doesn't advance to affect all parts of the body.

"You can look at all the survival curves of a large number of ALS patients, and there's always a small percentage who survive a very long time. Many are badly incapacitated, but not everyone is. There are patients who are extraordinarily slow in their progression over the years. British physicist Stephen Hawking has lived with the disease for over 40 years... "

Bradley has treated a patient with ALS for nearly 40 years who is still able to play golf and enjoy his business. Another patient of Bradley's actually saw his ALS get better.  Bradley confirmed that the patient had ALS and watched him over the years. He improved so much that Bradley eventually couldn't sign his disability papers because he was no longer "disabled".

So, what's different about some patients that allows them, to live longer or even to recover from ALS? Bradley says."Nobody has been able to explain why some people progress more slowly or more rapidly or remit. Nobody knows. We wish we did."

Bradley tells his patients that what they may have read may not be what happens in their disease. "Information in brochures and on the Internet is an average. An average is not necessarily what happens to individual patients".

WHAT IS ALS/MND? ALS/MND - Amyotrophic Lateral Sclerosis or Motor Neurone Disease is a progressive, usually fatal neuromuscular disease. It attacks motor neurones in the spinal cord and lower brain which transmit signals from the brain to the voluntary muscles throughout the body.

When motor neurones die as a result of ALS/MND, the ability of the brain to control muscle movement is lost. When muscles fail to receive messages, they weaken and waste away (atrophy). ALS/MND is also known as Lou Gehrigís Disease and Maladie de Charcot, after Jean-Martin Charcot, the French neurologist who first described it in 1869.

WHAT ARE THE SYMPTOMS OF ALS/MND? The groups of nerves and therefore muscles affected and the order in which they are affected varies from one person to another. Early symptoms usually include tripping, dropping things, abnormal fatigue of the arms and/or legs, slurred speech, muscle cramps and twitches, sometimes violent (called fasciculations) and mood swings including uncontrollable periods of laughing or crying.

The hands and feet may be affected first, causing difficulty in walking or using the hands for the activities of daily living such as dressing, washing and buttoning clothes.

About 25% of patients have bulbar onset, which means that the throat, voice and swallowing are first affected. About 50% have arm onset, and 25% leg onset. The disease frequently takes its toll before being positively diagnosed: some patients are significantly debilitated before learning they have ALS/MND.

Muscle wasting gradually spreads to the muscles of the trunk of the body, and the disease eventually affects swallowing, chewing and breathing. Complete paralysis ultimately results, usually occurring within two to five years of diagnosis. When the diaphragm is affected, the patient is unable to breathe unaided and requires permanent ventilatory support in order to survive.

ALS/MND attacks only 'motor' neurones so sight, touch, hearing, taste, smell and muscles of the eyes and bladder are generally not affected. Sexual function and drive are not affected.

The mind is not affected, and remains sharp despite the progressive degenerating condition of the body. Dennis Kaye, a Canadian PALS, wrote an inspirational book on his struggle: "Laugh? I Thought I'd Die". He said of his: "With keen mind and open eyes we watch ourselves die."

WHAT IS THE AVERAGE LIFE EXPECTANCY? Between two and five years for the newly diagnosed person, although improved medical care is resulting in longer and more productive lives for people with ALS/MND. Twenty percent will live more than five years and up to ten percent will survive more than ten years. Myself and many others are still in complete remission after twenty years or more.

HOW COMMON IS ALS/MND? A normal population produces about 2 new cases per 100,000 every year. (A 1995 Dalhousie University Study found in that there was a 2.03 per 100,000 population incidence in Nova Scotia. As ALS/MND is considered terminal and incurable, death rates are very close to incidence rates.)

According to the United States National Institute of Health, some 5,000 people in the USA are newly diagnosed with ALS each year. That's about 13 new cases every day. Many scientists believe the incidence of ALS/MND is increasing, though some feel this may be due to improved understanding of the illness and better diagnostic techniques. ALS/MND affects about seven or eight people out of every 100,000.

It is estimated that as many as 30,000 Americans have the disease at any given time, and that some 300,000 Americans who are alive and apparently well today will die with ALS. In Canada, from a population of about 30 million, two to three Canadians die every day of ALS/MND.

Over 2,500 Canadians currently have ALS. Some 20,000 to 25,000 Canadians who are alive and apparently in good health will die of ALS/MND. There are around 1300 people in Australia with ALS/MND and on average one person dies each day from ALS/MND.

HOW IS ALS/MND DIAGNOSED? At present there is no definitive means of diagnosis of ALS/MND. Most diagnoses are made by eliminating all other possibilities - ailments with symptoms resembling those of ALS/MND. Neurologists use a number of clinical tests to establish a profile, including blood testing, MRI (Magnetic Resonance Imaging) scans and EMG’s (Electro Myographs).

WHO IS LIKELY TO GET ALS/MND? Anyone can get ALS/MND. Most who develop ALS/MND are between the ages of 40 and 70. There are, however, cases of the disease attacking persons in their twenties and thirties. Generally though, ALS/MND occurs in greater percentages as men and women grow older.

ALS/MND strikes men slightly more frequently than women. About one in 800 adult men, and one in 1,200 adult women die of ALS/MND. ALS/MND occurs throughout the world with no racial, ethnic or socioeconomic boundaries. 90+% of ALS/MND cases are people with no family history of the disease. The remaining cases are classified as familial or inherited ALS/MND.

WHAT DOES "AMYOTROPHIC LATERAL SCLEROSIS" MEAN? "A-myo-trophic" comes from the Greek. "A" means no or negative, "Myo" refers to muscle and "Trophic" means nourishment: thus "No muscle nourishment". When a muscle has no nourishment, it "atrophies" or wastes away. In this case it is nerve nourishment.

"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 "sclerosis" scarring or hardening, in the region.

WHY IS IT ALSO KNOWN AS "LOU GEHRIG'S DISEASE"? Lou Gehrig, "The Iron Horse", was a baseball superstar in the late 20's and 30's, one of the "Golden Ages" of baseball. After 14 glory-filled seasons, Lou Gehrigís career, and his life, were cut short by ALS/MND.

ALS/MND claimed the lives of actor David Niven, US Senator Jacob Javits and Jon Stone, co-creator of Sesame Street, died in 1997 of ALS/MND. Physicist Stephen Hawking is still alive decades after diagnosis at 19 years old and communicates using his thumb to operate a voice synthesizer.

ARE THERE DIFFERENT TYPES OF ALS/MND? There are three common classifications, and numerous sub-categories: Sporadic: the most common form of ALS/MND. Familial: less than 10% of ALS/MND cases suggest genetic inheritance Guamanian: a high number of cases of ALS/MND occur in Guam and the Trust Territories of the Pacific.

It is now believed there may be as many as seventeen types of ALS/MND.  The distinctions are complicated to explain but may include Slow onset, Limb onset, Bulbar onset, Atypical and more. The figure of seventeen is disputed by many but generally accepted as a possibility.

WHEN WAS ALS/MND FIRST DISCOVERED? ALS/MND was first described in 1869 by Jean-Martin Charcot, an innovative French neurologist. The disease was first known as "Maladie de Charcot".

WHAT CAUSES ALS/MND? The cause of ALS/MND is not yet known. While many theories are being researched, at present neither a cure nor a definitive means of prevention is known.

In 1993, scientists announced in a paper published in the British journal "Nature" that they had isolated the gene associated with about 20% of the cases of the inherited form of the disease (the SOD or Superoxide dismutase gene). While only 10% of ALS/MND patients have this genetic predisposition, there is no evidence of a clinical difference between the familial and the sporadic forms of the illness.

A currently favoured theory combines genetics and toxicity (poisons): that sporadic ALS/MND occurs in those with a genetic predisposition to motor neuron degeneration, and that the illness is then triggered by environmental factors. In Nov 1996, Dr. Jeffrey Rothstein of Johns Hopkins University found that 42% of sporadic ALS/MND patients have a defect in the gene that controls the protein EAAT2, a protein that helps to regulate the brain's glutamate levels, well known to be a factor in motor neuron degeneration.

CAN YOU "CATCH" ALS/MND? It cannot be "caught" and is not contagious. Though some scientists believe it is possible that ALS/MND is caused by a slow-acting or latent "virus", there is absolutely no evidence that it is contagious: there is no increased incidence among medical personnel who deal with ALS/MND patients.

WHAT ABOUT ENVIRONMENTAL CAUSES? The very high incidence of ALS/MND on the island of Guam, in Western New Guinea and on Kii peninsula of Japan may provide some clues about environmental influences. Heavy metals such as lead and mercury are suspected causes, as is aluminium, which can poison the body and cause ALS/MND symptoms.

IS THERE HOPE FOR PEOPLE WITH ALS/MND? As stated at the beginning of this page, People diagnosed with this illness may live for thirty or more years, some even reverse their symptoms. In this respect there is always hope.

It can have a devastating effect on patients and their families. As they struggle to cope with the prospect of advancing disability and death, it consumes their emotional and financial reserves. It is a costly disease in its later stages, demanding both extensive nursing care and expensive equipment.

Recent medical discoveries have created new drugs that seem to slow the progression of the disease. Others have shed light on factors that will encourage the regrowth of nerve cells. Advances in knowledge of other neurological diseases also continue to shed light on causes and treatment of ALS/MND. As more is learned and understood “hope” also increases.

WHAT CAN I DO TO HELP? ALS/MND takes a tremendous toll on the physical, financial, and emotional resources of its victims and their families. ALS/MND societies and support groups around the world do much to help, but there's always need for more. If you know someone with ALS/MND, offer your time to relieve the family members of the constant strain. Or just talk, listen, be a friend. Spread the word.

We must continue to raise public awareness of this devastating killer. Get involved, find out, write, phone, talk, shout about it. Give money. Patients often need expensive home renovations, specialised equipment, therapy, and nursing care, for an open-ended time frame. Science needs funding to intensify the search for cause and cure, so we can eliminate this nightmare.

An informative book explaining ALS/MND in clear layman’s terms is available.

"ALS - Lou Gehrig's Disease" by Mary Dodson Wade (winner of the Blue Ribbon of Educational Excellence, USA) explores the history of the disease from diagnosis to sophisticated techniques used to treat and help patients cope. Real life stories from PALS and CALS make this book a valuable resource for understanding this illness.

WHERE CAN I LEARN MORE?  The Internet and World Wide Web contain a tremendous amount of information on ALS/MND. Beware, some of it is complete nosense. Please see my Useful Links page. Support groups, universities, medical and scientific associations, drug companies, and many individuals are represented, most with links to other trusted sites, such as this.

ALS/MND Societies/Support Groups' Websites

See Also This Site's Useful Links

International Alliance of ALS/MND Associations
ALS Canada
ALS Association USA
Australians and New Zealanders subscribe to OZPALS
Brisbane OZPALS Australia 
Vereniging Spierziekten Nederland (VSN) ALS Diagnostic Support Group
Muscular Dystrophy Association USA

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