ALS: Is There Any Hope?
Amyotrophic Lateral Sclerosis (ALS), or more commonly known as Lou Gehrig’s Disease, is a rare nervous system disease that renders the nerve cells of the spinal cord and brain useless. The nerve cells in the body slowly degenerate and are eventually unable to perform their job: the control of muscle movement. As the muscles continue to not receive instructions, the body suffers from muscle loss control. This slow process affects multiple normal bodily processes humans experience everyday and eventually leads to death. The cause of this disease is unknown.
The different types of neurons (nerve cells) affected decide which symptoms patients experience. Since ALS is a gradual experience, it can take a long time to diagnose and symptoms may be hard to identify. The first potential signs for ALS include continued muscle weakness, a tendency to drop things, tripping, slurred speech and twitching. Most commonly, patients lose muscle movement in the outside limbs and then the decreased muscle movement spreads to the inside of the body and causes paralysis. Most patients lose the ability to move, eat, talk and eventually breathe in later stages of the disease.
Those affected are generally older and between the ages of 40 and 70. Because of the wide range of candidates for the disease to attack, the average life expectancy of people after diagnosis is 2-5 years. For the 5,600 patients diagnosed each year, ALS seems like a death sentence with no cure in the future.
So is it true? Is there really no hope for those diagnosed? Every person diagnosed with ALS is forced to face the horrifying thought of dying too quickly. Organizations like the ALS Association, have been dedicated to finding a cure for decades but to no avail. A cure is still possible and no one has given up hope, but in the meantime, treatments can slow the progression of symptoms and help patients try to live normal lives. Physical therapy works to keep an individual independent for as long as they can. Individuals can work with physical therapists or complete low-aerobic outdoor activities like walking and stationary biking, which work to improve the strength of unaffected muscles. As ALS grows throughout the body, speech skills are almost completely eliminated, so a speech therapist can offer guidance to patients and teach them how to communicate. Thus far, the Food and Drug Administration has approved four drugs for treatment: Radicava, Rilutek, Tiglutik and Nuedexta. These drugs make the symptoms easier to cope with and offer short term relief. Rilutek, for example, prolongs someone’s life expectancy by three months. Additional trials are being conducted to find more effective treatments. One trial conducted in 2014 alongside the Harvard Stem Cell Institute and the ALS Association, showed how a drug called Retigabine reduced the hyperexcitability of motor neurons. This hyperexcitability is what is believed to be the reason the neurons shut down in the first place. The company that conducted the trial continues to focus on hyperexcitability and its limits, and is deciding on whether or not to release Retigabine commercially. The scientific community is bouncing with clinical trials and potential treatments, so there is hope.
Potential medical treatments, care for those diagnosed and technological capacities received an inconceivable boost in the late 2010s because of the wildly popular 2014 Ice Bucket Challenge that circulated around the internet raising 115 million dollars for the ALS Association’s efforts. The Ice Bucket Challenge included a video recording of a person pledging to donate money to the ALS Association, nominating others to do the same and then pouring a bucket of ice water over their head. This large sum of money funds research studies and helps take care of patients. In addition to raising a large amount of money, the ALS Ice Bucket Challenge educated an incredible amount of people all over the world about the disease. Another way that ALS was broadcast to large numbers of people was when Lou Gehrig, a famous baseball player, was diagnosed with ALS in 1936. After Gehrig noticed the symptoms affecting his performance in games, he retired from his baseball career. This subsequently raised awareness at a time when ALS was very rare and less well-known. The disease would then go on to become known as “Lou Gehrig’s Disease.”
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