Why the ALS Ice Bucket Challenge Means So Much – Written by Tiffanie Bungarz

 

Imagine one day, while living your life, completely happy and healthy, you start noticing some changes with your body. You start noticing your hands are weakening and you have random muscle twitching. You don’t think much of it but decide to see a doctor. After months of testing and visits to a specialist, you are told you have ALS (Amyotrophic lateral sclerosis (ALS), more commonly referred to as Lou Gehrig’s disease). Your immediate thought is AL, what? At that point you don’t even realize the severity of the disease because you never really heard much about it. It doesn’t take long for both you and your family to read up and learn that this is one of the most devastating diagnoses you could ever receive. ALS is an immediate death sentence.

Unfortunately, this is exactly what my family was faced with back in 2012. My stepfather was diagnosed with ALS at the young age of 55. While statistics show the average life expectancy of a person with ALS is 2 to 5 years after diagnoses, we were only given 10 months with him. In those 10 months we suffered with him as we watched him lose his ability to walk, talk, eat, and move. He was fed through a feeding tube and required a BiPap breathing machine at night. During this time family and friends who were once there are not coming around as much. They don’t know what to say or how to act as they are grieving already. As his condition worsened, the BiPap machine could not keep up. It was his wish to not to be put on a ventilator which is a hard decision every ALS patient and their family need to make. He lost his battle on December 9, 2012.

Currently, there is only one drug approved by the U.S. Food and Drug Administration (FDA) to treat ALS, which only modestly extends survival by two to three months. Consequently, ALS is 100 percent fatal. In addition to acclimating to the challenges that come with losing control of voluntary muscle movement, people with the disease progressively lose their ability to eat, speak, walk, and eventually breathe. It is like being buried alive while being completely aware of your fate. ALS does not discriminate and affects people of all races, gender and age.

Prior to the ALS Ice Bucket Challenge, The ALS Association struggled to collect donations which are needed to fund research. The pharmaceutical companies are not as involved with ALS research since the disease is not an easy money maker. ALS is not as common as other diseases like cancer and people really don’t talk about ALS. Like our family, when you lose a loved one, you feel defeated, like being a lonely soldier in a war against the world. Seeing the attention brought to ALS is extremely uplifting for those of us who’ve suffered loss from ALS or are currently fighting. Whether you have the means to donate or you just spread the message with a happy video of ice water dumping on your head… it is appreciated and it is helping in so many ways! For more info visit www.alsa.org

Tiffanie Bungarz

 

July 2009, symptom free
July 2009, symptom free
June 2012 at the ‘Walk to Defeat ALS fundraiser, 6 months before passing away
June 2012 at the ‘Walk to Defeat ALS fundraiser, 6 months before passing away

 

 

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