My first experience in hearing about amyotrophic lateral sclerosis (ALS) was back in 1983. I was in my second year of nursing school when I heard that ALS had afflicted my favorite nursing instructor's husband. We had met him several times when he was picking up his wife after work. He was so young and healthy; they seemed to have the perfect relationship. After the diagnosis, he would still come into the nursing school but I began to see the progression of the disease. Her husband began to fade from a strong, fit, and confident businessman to a man who needed help to walk, eat, and communicate. We supported them by attending the ALS support group that they organized to bring awareness to the disease. Experiencing the impact this disease had on Peter was difficult to watch, but the emotional roller coaster that their family and friends endured was heart wrenching. This emotional period in my life reemerged when the "ALS ice bucket challenge" became a viral sensation. Because of social media, this disease has been given the exposure it needed to make millions of people aware of the ALS.
The first mention that ALS existed was back in 1939 when Lou "Iron Horse" Gehrig, a New York Yankee's baseball player, was diagnosed with ALS. Gehrig signed his first contract with the New York Yankees in April 1923. In 1931, he set an American League record by clubbing 184 Runs batted in, and, in 1932, he became the third player to hit four home runs in a single game. Two years later, he took home baseball's coveted Triple Crown by leading the league in home runs (49), average (0.363), and Runs batted in (165).
Over the next 14 years, he led the team to six World Series titles and set the mark for most consecutive games played (available at: http://www.biography.com/people/lou-gehrig-9308266#synopsis; retrieved August 20, 2014). In 1938, Gehrig had his first subpar season. His hard-charging career seemed to have caught up with him as his body started to fail. But Gehrig, who was having trouble with things as simple as tying his shoelaces, feared that he might be facing something more than just the downslide of a long baseball career. In the spring of 1939, he admitted himself in the Mayo Clinic and after a series of tests his physician told him that he had ALS. He retired from baseball on May 2, 1939.
Seeing such a strong athlete being robbed of his body so quickly shook the sports world. His farewell speech to the baseball fans and the world was on July 4, 1939 at the Yankee Stadium during a game that was held in his honor. "Today I consider myself the luckiest man on the face of the earth. I might have been given a bad break, but I have an awful lot to live for. Thank you." Lou Gehrig passed away during his sleep on June 2, 1941, just 2 weeks shy of his 38th birthday.
It has been 75 years since Lou Gehrig died of ALS, and there still is not a cure for the disease. Hopefully, that is about to change.
WHAT IS ALS
Amyotrophic lateral sclerosis is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons results in the brains inability to initiate and control muscle movement. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.
Early symptoms of ALS often include increasing muscle weakness, especially involving the arms and legs, speech, swallowing, or breathing. Amyotrophic lateral sclerosis occurs throughout the world with no racial, ethnic, or socioeconomic boundaries.
No cure has yet been found for ALS. However, the Food and Drug Administration approved the first drug treatment for the disease in 1995. Riluzole (Rilutek, Sanofi-aventis US Bridgewater, New Jersey) is believed to reduce damage to motor neurons by decreasing the release of glutamate. More money is needed to provide research, and the ice bucket challenge seems to have been the break that this disease and similar diseases needed (available at: http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm; retrieved August 21, 2014).
THE VIRAL SENSATION OF THE ALS ICE BUCKET CHALLENGE
In the past, there have been ice bucket challenges for various charities, but they were typically local events with minimal publicity. The power of social media has taken that challenge to the next level. The ALS Ice Bucket Challenge was a vision created by Pete Frates and Patrick Quinn. Pete Frates was a division one college baseball athlete at Boston College. He was known for his strength and agility on the baseball field. Hitting the fastball was his speciality and ranked number one in the division for 3 years in a row. In the spring of 2012, Pete noticed that he could not swing as quickly, and his strength was faltering. As his batting average went from 0.400 to 0.250, he realized that this was more than just his aging body. Pete Frates was diagnosed with ALS in March 2012, at the young age of 27 years. Six hours after the devastating news, Pete announced to his family that he had an inspiring vision to lead a movement to fight ALS and change the world. He knew that he had to think outside the box and make his story relatable and personal. He became actively involved in the Massachusetts ALS Association. It is through this ALS Association that Patrick Quinn met Pete. Patrick was diagnosed with ALS in 2013 at 31 years of age. He traveled from Yonkers, New York, to receive medical treatment in Boston. While in Boston, he would stop in and visit Pete to receive information and support about the disease. They were discussing what they could do to make a difference for all other afflicted by ALS. Patrick had seen other people taking part in an ice bucket challenge, and they both decided that it would be a great way to get their vision started. Together they launched the ice bucket challenge campaign on social media, and the challenge went viral overnight. As part of the challenge, people all across the country, in every imaginable setting, are dumping buckets of icy water on their heads and then challenging two or three friends, on video, to do the same within the next 24 hr-or pay $100 to an ALS charity.
As of September 15, 2014, the ALS Association has received $113.30 million in donations compared with $2.2 million during the same time period last year. These donations have come from existing donors and 1.1 million new donors to the association (available at: http://www.alsa.org/news/media/press-releases/ice-bucket-challenge-082114.html; retrieved September 21, 2014).
It is incredible to see how these men turned their fateful diagnosis into something positive, dedicating their time for recognition and research funding for ALS. Making the story personal and using the power of social media have superseded their goals and dreams. The money raised may not help the progress of their stage of ALS, but it will certainly help those who are diagnosed in the future. My hat goes off to these two incredible men, their families, and all who took the ice bucket challenge. The month of August 2014 was phenomenal, but Pete's best accomplishment was the moment he became a father. On August 31, Pete and his wife Julie welcomed Lucy Fitzgerald Frates into the world. Their child will be blessed grow up knowing what an incredible, strong willed and determined father she has.
We must embrace any method we can to get our words heard. Thinking outside of the box and having a true passion and vision can take your cause to new heights. Take advantage of your social media outlets and best of all ... the cost is minimal or free
Respectfully,
Tracey A. Hotta, RN, BScN, CPSN, CANS
Editor, PSN