ALS Awareness Month

tt-als-awareness-2.gifThe formal name for ALS fits in a tongue-lashing category (amyotrophic lateral sclerosis), and its effects are even more difficult to bear.

ALS sat in the dugout of inattention until the great Lou Gehrig, the famous first baseman for the New York Yankees, cut his career short because of it. He was 36 years old. The disease strikes the body’s motor system at the brain and spinal cord.

In recent years, who could forget the photos of another wrinkled-up, bent-over victim, Stephen Hawking, who was probably the best-known physicist since Albert Einstein?

Here is what Hawking had to say about ALS: “If you are disabled, it is probably not your fault, but it is no good blaming the world or expecting it to take pity on you. One has to have a positive attitude and must make the best of the situation that one finds oneself in: If one is physically disabled, one cannot afford to be psychologically disabled as well.”

Hawking lived an intellectual life of stupendous proportions despite the crippling effects of the disease. And during this month, ALS Awareness Month, it is appropriate to offer some hope to those afflicted with it or those who care about someone who has the disease.

Admittedly, so many of us are now aware of this disease as a result of the proliferation of the “ALS ice bucket challenge” that took over social media nearly five years ago. I too joined the effort, and it afforded me the opportunity to meet and spend time with my friend, Milt Sierra, who unfortunately has since succumbed to ALS.  You may ask, what resulted from endless videos of people getting ice dumped over their heads? Well, besides increased public awareness, over $100 million was donated for ALS research.

In this blog, we often draw attention to social movements or organizations that center on a particular illness or disease. We do so because we hope to create awareness and educate. This is why we always share essential facts about these diseases, ranging from danger signs to organizations that raise funds for research. And yes, ultimately, what we are also seeking is support, usually through donations. This is particularly important if the condition is less well-known or the numbers don’t create immediate, overwhelming alarm. But the goal remains the same: raising money for a cure. It’s really is as simple as that. Researchers in the bio-medical field spend countless hours writing proposals for research that might lead to improved treatments or a cure. ALS is no exception. You can learn more at the ALS Association.

Important ALS Facts.

  • ALS is not contagious.
  • Although the life expectancy of a person with ALS averages about two to five years from the time of diagnosis, this disease is variable, and many people can live with the disease for five years or more. More than half of all people with ALS live more than three years after diagnosis.
  • Once ALS starts, it almost always progresses, eventually taking away the ability to walk, dress, write, speak, swallow, and breathe and shortening the life span. How fast and in what order this occurs are very different from person to person. While the average survival time is three years, about 20% of people with ALS live five years, 10% will survive 10 years, and 5% will live 20 years or more.
  • Progression is not always a straight line in an individual either. It is not uncommon to have periods lasting weeks to months where there is very little or no loss of function. There are even very rare examples in which there is significant improvement and recovery of lost function. These ALS "arrests" and "reversals" are unfortunately usually transient. Less than 1% of patients with ALS will have significant improvement in function lasting 12 months or more.
  • Approximately 5,000 people in the U.S. are diagnosed with ALS each year. The incidence of ALS is two per 100,000 people and estimated that there are at least 16,000 Americans may be living with ALS at any given time.
  • ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries and can affect anyone.
  • Military veterans are approximately twice as likely to develop ALS.
  • The onset of ALS often involves muscle weakness or stiffness as early symptoms. Progression of weakness, wasting and paralysis of the muscles of the limbs and trunk as well as those that control vital functions such as speech, swallowing and later breathing generally follow.
  • There can be significant costs for medical care, equipment and home health caregiving later in the disease. It is important to be knowledgeable about your health plan coverage and other programs for which you may be eligible, including Social Security Disability, Medicare, Medicaid, and Veteran Affairs benefits.

Source: The ALS Association

Given the dreadful effects of ALS, it isn’t easy to fight the despair that accompanies its diagnosis. That’s why your support for continued research is vital to the relentless journey to eradicate this disease. We need your support.

That’s my take, what’s yours?


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