Revisiting the disease behind “The Ice Bucket Challenge”
In 2014 it seemed that everyone in the mainstream media was competing in the “Ice Bucket Challenge” to raise awareness for ALS. Maybe you participated, or witnessed celebrities dumping buckets of ice water on themselves.
So now what?
Did we find a cure? Why aren’t people still dumping ice water on one another? The short answer is no, we haven’t found a cure. However, the ice bucket challenge did raise over 100 million dollars and lead to breakthrough research for ALS.
ALS stands for Amyotrophic Lateral Sclerosis, which is a progressive neurodegenerative disease. Also referred to as Lou Gehrig’s Disease, ALS affects a person’s Upper Motor Neurons (UMNs) and Lower Motor Neurons (LMNs). The job of the upper motor neuron is to send a signal to the lower motor neuron which in turn sends signals to the muscles. Typically, the LMNs are affected first; with disease progression both upper and lower motor neurons are affected. Thus, in a person with ALS the muscles are not receiving these signals because the motor neurons are damaged. Ultimately, this leads to atrophy, or wasting, of the muscles throughout the body.
Because ALS can affect all parts of the body, people with ALS can often have difficulty producing speech. Speech disorders, known as dysarthria, are common in people with ALS. The speech changes are largely due to muscle atrophy, weakness, spasticity, and incoordination. The types of dysarthria that are typically seen in people with ALS are flaccid and spastic, often presenting as a mixed flaccid-spastic dysarthria. The most salient speech characteristics include reduced loudness, strained and/or breathy voice quality, reduced pitch range, slowed rate, hypernasality, and imprecise articulation. Ultimately many people with ALS lose their ability to communicate verbally.
There are many ways that we can facilitate communication for people with ALS. Some compensatory techniques may include changing environmental factors, such as reducing background noise, optimizing lighting, and reducing the distance between the speaker and listener. As the patient’s verbal communication worsens, the treatment focus may change. For many that means Alternative/Augmentative communications systems may be needed.
So, although the “Ice Bucket Challenge” has lost its presence in social media, let’s remember ALS and continue to support the victims of this disease by raising money and supporting research to improve quality of life and find a cure. ALS may have slipped the minds of many people, but that does not mean that the people affected by it most no longer endure the consequences. This is why it is important to continue advocating for those people, and keep the fight strong against ALS.
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Duffy, J.R. (2013). Motor Speech Disorders: Substrates, Differential Diagnosis, and Management (3rd ed.). St. Louis, MO: Elsevier Mosby.
“Speech Deficits and ALS – New York State Speech-Language-Hearing Association.” Speech Deficits and ALS – New York State Speech-Language-Hearing Association. N.p., n.d. Web. 01 Sept. 2016. <http://www.nysslha.org/i4a/pages/index.cfm?pageid=3560>.