10 facts about ALS that don't involve an ice bucket

So many ice buckets. I will never put down people who donate to charity, but something doesn't sit quite right with me with this whole ALS Ice Bucket Challenge. You can't argue that it's a huge success and as a friend put it earlier this week- 'a case study in non-profit fundraising' for the ages. A genius idea, yes. But also a gimmick. And I think we have to be careful when we combine gimmicks with things as serious as Amyotrophic Lateral Sclerosis.

My worry is that this sensation is creating more opportunities for people to post videos to social media and tag friends than actual awareness for the ALS Association's mission and the disease itself.  So instead of dumping water on my head (but right on if you've done it and more props if you donated too), I donated and wanted to share some facts on what is reality for over 12,000 Americans at any given point in time.

  • ALS attacks the motor neurons, or nerves, that control all your muscle movements, from kicking your legs to swallowing a drink. The nerves stop relaying messages from the brain to the spinal cord like "Ooo. I see cat video link I want to watch. Let me grab the mouse, move it and use my index finger to click it." When these nerves die, they stop communicating with the muscles and the muscles weaken to the point where they don't work anymore.

    ALS brain

    Brain imaging of someone with ALS. From Wikipedia.

  • Initial symptoms include muscle cramps or tightness (spasticity), muscle weakness impacting the use of arms and legs, speech difficulties, and difficulty chewing or swallowing.
  • Most people with ALS are diagnosed between ages 40 and 70. It impacts men more than women.
  • ALS does not typically impact the basic five senses- sight, smell, hearing, taste, and touch. Most people with ALS do not experience significant changes in their intelligence or other cognitive abilities, although some people do develop dementia. So you often have a situation where someone is very aware of what's going on, but can't respond or react in the ways we're all used to.
  • ALS typically progresses rapidly once significant symptoms begin. Most people with ALS experience respiratory failure as their breathing muscles deteriorate within 3-5 years of onset. However, about 10% of people with ALS live for 10 years or longer after diagnosis. The course of the disease is highly variable and unpredictable.
  • Most cases of ALS are not inherited. It's estimated about 90-95% of cases of ALS are not linked to any known risk factors. That other 5-10% is thought to be linked to a gene defect that can run in families.

    Northwestern Neurologist and ALS Researcher Dr. Teepu Siddiqu (Chicago Tribune Photo)

    Northwestern Neurologist and ALS Researcher Dr. Teepu Siddiqu (Chicago Tribune Photo)

  • There is no test that diagnoses ALS. Diagnosis comes from examining symptoms and the exclusion of other possible causes of the disease.
  • There is no cure for ALS. There are some medications now available that can help slow the progression, but treatment often revolves around symptom management, like reducing muscle cramps or improving fatigue. People with ALS often work with physical therapists, occupational therapists, and speech therapists to improve their quality of life through things like exercise programs, home modifications, alternative forms of communication. Quality end-of-life care is especially important.
  • Baseball Hall-of-Famer Lou Gehrig is probably the most famous public face of ALS, and many still refer to it as Lou Gehrig's disease. Other public figures with ALS include physicist Stephen Hawking, musician Led Belly, actor Michael Zaslow, 37 year-old former NFL player Steve Gleason,  and Ravens Director of Player Development OJ Brigance.

    alsa_logo

    From www.alsa.org

  • The ALS Association is funding research looking into possible genetic causes of the disease and clinical trials of medications. They also provide assistance to those living with ALS and coordinate clinical care centers. The National Institute of Neurological Disorder and Stroke (NINDS) is working on studies that examine how ALS actually works to destroy motor neurons and identifying biomarkers that would more quickly diagnose the disease.

Keep on donating, but please, please take some time to know where your money and efforts are going and how they're helping.

*All facts and figures compiled from ALS Association and NINDS.

For other takes on the Ice Bucket Challenge check out Music Mom, South of I-80, I've Got the Hippy Shakes, Ups and Downs of a Yoga Mom among pretty much everyone else on the internet.

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