Early signs of ALS may include pain-related symptoms, such as muscle cramps.
Many people may have been under-informed about ALS before summer 2014’s ALS ice bucket challenge took over social media and the release of The Theory of Everything, an Oscar-nominated film based on famed physicist Stephen Hawking’s struggle with ALS. Amyotrophic lateral sclerosis is commonly referred to as Lou Gehrig’s Disease after the Yankees first baseman who died at the age of 37, just two years after being diagnosed with the disease.
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The ALS ice bucket challenge moved celebrities and everyday people to action, raising $115 million in just a few short months. Participants posted video of themselves pouring buckets of ice water over their heads, and nominated friends to do the same- or fork over a $100 donation to the ALS Association.
Raising awareness is a top priority for the numerous organizations dedicated to ALS: According to the ALS Therapy Development Institute ALSTDI, there are 30,000 Americans living with this progressive neurodegenerative disease that causes muscle weakness, paralysis, and eventually, respiratory failure.
Though pain is not necessarily one of the defining symptoms of ALS, the disease attacks the cells in the brain and spinal cord that are necessary for muscle movement. Some of the early signs may include pain-related symptoms, such as muscle cramps and muscle twitching, as well as weakness in the lower extremities and difficulty speaking or swallowing.
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In The Theory of Everything, Eddie Redmayne’s Oscar-winning portrayal of Stephen Hawking showed audiences the gradual, and sometimes also sudden, deterioration. We see Redmayne as Hawking losing his ability to walk and speak clearly, if at all. He eventually ends up in a wheelchair and speaks through a computer.
According to Edward Kasarskis, M.D., Ph.D., Director of the multidisciplinary ALS Center at the University of Kentucky Neuroscience Center in Lexington, Kentucky, the source of muscle pain in ALS is complex. Dr. Karsarkis says leg cramps are common in people affected by ALS. The complexity lies in another type of muscle pain experienced by those with this disease, which occurs when they are using all of their energy to move, and their brain and body part just aren’t making a connection- it could be a movement as simple as brushing their hair. Others may experience joint pain from their shoulder, for example.
Even though ALS/Lou Gehrig’s disease does not cause pain in and of itself, it’s the effects- weakness, paralysis and eventual immobility- that may result in musculoskeletal pain. In fact, the global impact of musculoskeletal diseases is rising due to the aging of the population and more musculoskeletal trauma. It’s not just physical though- The Theory of Everything explored the profound emotional effects ALS puts on its sufferers and their families, their caretakers. The film showed the slow decline of Stephen and Jane’s marriage. Of course only they know the real story, but the audience was left with the impression that the disease took its toll on their romance after the two had an almost abrupt but extremely emotional conversation that ends with Jane saying “I have loved you. I did my best.”
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