So you wake up and start doing your #socialmediacrawl while lying in bed. Then you notice a Facebook or Instagram notification about a post you have been tagged in and you realize your time has finally come. You've been nominated for the ALS Ice Bucket Challenge.
The ALS Ice Bucket Challenge is a viral charitable act that hit social media in August 2014. Participants are expected to dump a bucket of ice water on themselves and/or donate money towards ALS research. The acute shock of cold as the water hits your body is in theory supposed to mimic some neurological symptoms people with ALS may feel.The challenge has quickly taken social media by storm with several celebrities and politicians taking part.
What exactly is ALS and why is awareness needed? Here's the scoop:
Amyotrophic (without muscle nourishment/growth) Lateral (nerves and muscles affecting the peripheral body parts- i.e arms, legs) Sclerosis (hardening ), commonly known as Lou Gehrig disease is a neurodegenerative disease which causes muscle degradation and paralysis. It is the most common motor neuron disease and usually presents between the ages of 40-60 years.There is a predominance with the Caucasian race however all races and ethnicities are affected, with more cases occurring in men than women.
Disease occurs when upper and lower motor neurons in the brain and spinal cord begin to dysfunction and are no longer able to send signals to muscles. Muscles are unable to move appropriately, creating atrophy (muscle wasting).
Patients often times initially present with a complaint of muscle weakness. There are three classifications of onset:
- Limb Onset- Symptoms include dropping things out of hands, increased clumsiness,tripping and awkward walking. Signs may be focused to one limb or several limbs.
- Bulbar Onset- Changes in speech (slurring or quieter voice) and/or difficulty swallowing.
- Respiratory Onset- The muscles which assist with breathing become weak and patients present with difficulty breathing.
Dysarthria- difficult speaking
Dysphagia- difficulty swallowing
Dyspnea- difficulty breathing
Other common symptoms include hyperreflexia, spasticity and fasciculations (involuntary movements of muscles), and muscle cramps. Some individuals will develop bulbar weakness (weakness of the cranial nerves affecting facial, eye, and mouth movement). 50% of people with ALS will also develop cognitive impairment (memory loss, behavioral changes). Voluntary eye movements are usually the last function to be lost and may often times be used as a way for communication.
Most patients become wheelchair bound due to loss of function of lower extremities. They also need breathing support including respirators and other breathing mechanisms (non-invasive ventilation) due to loss of function of muscles. Esophageal movement is usually also lost and patients eventually must be fed percutaneously (directly through the stomach).
Death usually occurs 3-5 years after symptom onset but there are cases of people living for over 10 years. The majority of individuals will ultimately succumb to respiratory failure or infection.
Management for ALS is largely supportive and includes using medications to relieve symptoms and improve quality of life. Aggressive physical, occupational, and speech therapy is also necessary. Riluzole is the only FDA approved medication that offers possible delay in progression, if only for a few months. However it does not provide physical improvement.
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Currently there is not a specific test that can diagnose ALS. Various laboratory testing and imaging must be done to exclude other causes of ALS symptoms first. Other possible causes include brain tumor, muscular injury, HIV, syphilis, and demyelinating disorders.
The process of developing ALS may be multi factorial (genetic and environmental). Many speculations regarding environmental causes include head trauma, diet, and neurotransmitter dysfunction.Several hereditary gene mutations have been identified in families with ALS in multiple members. The most frequent of these mutations has been identified as SOD1 (superoxide dismuatse) on chromosome 21. More information on this gene can be found at The National Institutes for Health Website.
Active research is still being done to find new treatments and a viable cure for ALS. This is where the Ice Bucket Challenge comes in. Monetary funds help with research, public policy and advocacy, and care resources.
More information on local resources and how you can help can be found at ALS Association
Check out Star Wars' beloved R2D2 risking his life in the Ice Bucket Challenge
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