b)-Build Awareness!

Frequently Asked Questions

What is ALS?

It is an incurable fatal neuromuscular disease characterized by progressive muscle weakness, resulting in paralysis.

Is it fatal?

Yes, in every case. The average expected survival time for those suffering from ALS is three to five years, as of 2009.

How does this disease work?

The disease attacks nerve cells in the brain and spinal cord. Motor neurons, which control the movement of voluntary muscles, deteriorate and eventually die. When the motor neurons die, the brain can no longer initiate and control muscle movement. Because muscles no longer receive the messages they need in order to function, they gradually weaken and deteriorate.

How is this life threatening?

Because motor neurons also control the respiratory system so when the motor neurons begin to deteriorate and eventually die off, this brings on respiratory complications which impair a person’s ability to breath. Many ALS patients eventually die from pneumonia.

Does ALS impact the brain’s ability to function, as well?

Because ALS only attacks motor neurons that control the body’s voluntary muscles, patients’ minds and senses are not impaired.

How does a person know if they have ALS?

It is through an exhaustive ruling out process that doctors arrive at a conclusion that a patient probably has ALS. And it is through continued monitoring and continued deterioration that doctors can eventually and positively confirm an ALS diagnosis.

What sort of symptoms arise that would lead a person to seek a doctor’s opinion?

The initial signs of ALS may vary. Symptoms include stiffness and increasing muscle weakness, especially involving the hands and feet.

What are later stages of the disease like?

The disease eventually affects total body movement as well as speech, swallowing and breathing. ALS ultimately results in a total body paralysis, inability to speak, inability to eat/drink by mouth and inability to breathe unassisted, then simply an inability to breathe.

What do the letters ALS stand for?

Amyotrophic Lateral Sclerosis but it is also known as Lou Gehrig’s Disease. It is part of the Muscular Dystrophy group of diseases.

If it’s part of the MD group then why does ALS need “awareness” given all of the national telethons and other MDA efforts over all these years?

Until now the cause of ALS remains unclear and no cure exists. But more than this, take a poll of your friends, ask them if they know what is ALS and if they say yes, ask them to explain it. According to our personal experience, 9 out 10 people today still don’t know what ALS is, and about 3 out of 10, at best, have ever even heard of “ALS” or “Lou Gehrig’s Disease”. Without knowledge there can’t be funding and without funding, our hope of finding an acceptable treatment and cure won’t be realized.

Have there been any medical advances for ALS?

While there is no drug to prevent or cure the disease, recent breakthroughs have resulted in Rilutek, a drug that modestly slows the progression of ALS. While the breakthrough is great news, it’s not near enough. One drug only for a modest approach to treatment is not sufficient.

How many people are affected by ALS?

Approximately 14 cases of ALS are diagnosed each day nationwide. Most of those who develop the disease are between 40 and 70 years of age. At any given time, approximately 30,000 people in the United States are living with the disease. It is frequently caucasians who are diagnosed, though it is not limited to the caucasian population. It’s been said that 60% of all ALS cases are males. There is a 1 in 100,000 chance of it striking the same family twice, and it does strike some families twice. Where can a family turn to for support? The ALS Association has excellent resources for the many needs that arise while fighting ALS disease. Whether you’re a patient, caretaker, family member or friend, the ALS Association (inside the USA) can assist you and there is probably a chapter in your area.

Key Development Dates:

1850 – English scientist Augustus Waller describes the appearance of shriveled nerve fibers

1869- French doctor Jean-Marie Charcot first describes ALS in scientific literature

1871 – “On Amyotrophic Lateral Sclerosis” gets translated into English and published in a three-volume edition of Lectures on the Diseases of the Nervous System

1939- Lou Gehrig is diagnosed with ALS

1941- Lou Gehrig dies at age 38

1950`s- ALS epidemic occurs among the Chamorro people on Guam

1991- Researchers link chromosome 21 to FALS

1993- SOD1 gene on chromosome 21 found to play a role in some cases of FALS

1996- Rilutek® becomes the first FDA-approved drug for ALS

1998- El Escorial is developed as the standard for confirming ALS

2001 – Alsin gene on chromosome 2 found to cause ALS2

2011- Discovery of cause for all forms of ALS by researchers at Northwestern University, Chicago, Illinios

Other Points of Interest:

ALS is particulary tragic because it oftens strikes people who are very physically active

More people die from ALS than Multiple sclerosis or Huntington`s Disease

The longest known person to live with ALS is British physicist Stephan Hawking, who has lived more than 40 years with this disease.

With identical twins, if one has ALS, the other will get it, but time of onset can vary

At any given time, there are more people who fear they have ALS than people who actually have ALS

It is important to remember that ALS is quite variable disease; no two people will have the same experiences or journey

ALS can strike anyone.

Smoking! Smoking cigarettes appears to increase a person`s risk of ALS to almost twice the risk of nonsmokers. The more spent smoking the greater the risk.

A-myo-trophic comes from the Greek language. “A” means no or negative. “Myo” refers to muscle, and “Trophic” mean nourishment – “No muscle nourishment.”

For most PALS, the decision to get a percutaneous endoscopic gastrostomy (PEG) or feeding tube will have to be made sooner or later. There is understandably some trepidation — and even fright — at the thought of a feeding tube. For many PALS, swallowing and chewing difficulties can lead to decreased intake of food. This can cause a drop in weight, from moderate to severe. Decreased food also means decreased nutrition and the end result can be weakness. Furthermore, there is risk of choking and aspiration. A PEG tube can make life so much easier, and keep a PALS healthy and strong. It can ensure against choking and can even help conserve energy because as ALS progresses, it takes more energy to eat a meal. Some PALS report that it can take as long as two hours to eat dinner, and that they are exhausted afterwards

 

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