ALS, also known as Amyotrophic Lateral Sclerosis, is a terminal disease that causes the neurons (nerve cells) in the brain to break down all muscles in the body as well as breathing and talking. The famous baseball player for the Yankees, Lou Gehrig, died of ALS in 1936 and this disease is often named after him (Bear et al, 2001, p. 432). Here’s a breakdown of the scientific name:
A: meaning “no” or “negative”
Myo: refers to the muscles
Trophic: refers to nourishment
Therefore, Amyotrophic stands for “no nourishment to the muscles.” The word “lateral” is the area in the spine where the brain tells the muscles what to do. Lastly, the word “sclerosis” which is often heard with Multiple Sclerosis, stands for hardening. As neural signals from the brain and spinal cord send messages to the muscles that have sclerosis, the messages are stopped due to the “non-absorbable” muscle tissue. In the picture below, you can see that the axon is attached to the muscle. Nerve fibers feed off the axon and contract when triggered by a signal. With ALS, sclerosis hardens on the nerve fibers and blocks the signal from permeating through the membrane to the muscle causing degeneration (Medicaluniya, 2012). The meaning of ALS is very important for patients and families to understand, as well as how it begins to affect the body.
In 2005, my family received the news that my Papa was diagnosed with advanced stages of Lou Gehrig’s disease. For us, this was not only a shock, but something that would ultimately turn into a life changing learning experience. Like many others in the world, this was the first time we had encountered ALS and Lou Gehrig’s disease, so we were walking into the situation blind. We were told what to expect many times from many different doctors but nothing quite prepares you for the mental and physical deterioration until you experience it firsthand.
Our family made the decision after we found out about the diagnosis to move my Papa into our house, the doctors had warned us numerous times that he would need more and more special care as the disease progressed. In the beginning, he was still my Papa, he still would pester my cats, he could still sit on the back porch and smoke a cigarette, and he would still try with all of his might to get my brother and myself to watch Alfie with him. Slowly, my Papa began to experience changes, the changes that we were warned of at the doctors, one day he was fine (or so it seemed in my eyes) and the next day he could not walk to the bathroom on his own. He was physically falling apart in front of my eyes; our next step was to get him a motorized wheelchair. You see with a disease that is so physically deteriorating, you have to do everything in your power to try and let the person suffering have what little independence they have left. For us, it was the motorized wheelchair and giving Papa my brother’s room, so he would have a space of his own and feel more comfortable in our home.
Maybe I was slightly naïve at the time, even after hearing the prognosis from the doctors, but I was still convinced that one day my Papa would get out of his wheelchair. I was not sure how or why something so debilitating had to happen to someone I loved so much, but I was hopeful for a cure. Sadly ALS is not something you recover from, it is something that ultimately takes your life. For my Papa he only continued to worsen after we had to get him the motorized wheelchair. At first it was little changes like his mood over silly things such as getting him the wrong sauce for his fish, then it was bigger; his speech was all but absent. My mother had become a master at reading his lips and was able to help him communicate with us, thankfully. It was not really until the last few months of his battle with his disease that we all came to realize that the only positive outcome from all of this was going to be that he would not have to suffer anymore. In his final months, his breathing was labored, the only thing we could do was place him in hospice until it was his time to go.
While there is still no exact testing for ALS, there are ways to help doctors give a more accurate diagnosis. For this a doctor must rule out other similar diseases and would then be able to tell you if you have the qualifications of ALS. With my Papa, he had suffered from a couple of strokes before receiving the diagnosis of ALS. Many military men who are veterans, like my Papa, also have a higher risk of getting this disease making it a “service-connected disease” (ALSA, 2015). I’ve always wondered if this disease could ever affect someone who has never served in the military or been a spouse of someone who has. This disease mainly affects men (due to their service), however it is not impossible for females to get ALS.
The disease is also considered to be sporadic, as in not hereditary, according to the ALS foundation site (ALSA, 2015). Since there is no exact testing for this disease, there is a part of me that wonders if I or any of my family members could possibly get this terrible disease. The ALS researchers have been making strides in finding biomarkers that would help with earlier diagnosis and possible treatment for anyone might suspect having ALS (ALSA 2015). To care for someone with ALS, is not only hard on the soul but also tough on the pocket. Many households who take care of loved ones with this disease tend to spend a quarter of a million dollars on medical needs, doctor’s visits, and housing care (ALSA, 2015). Coming from experience, money has no factor on taking care of someone that you love in their last days. It is also important to remember that not only the person with ALS is suffering but the loved ones caring for the person affected also are grieving in their own way, and need special attention to help them cope with changes they are watching their loved ones go through on a daily basis.
Although this may be a rare disease among many others out in the world, this is a fatal and quick one. Doctors usually put patients in “stages” according to their illness, but with ALS, patients are given less than five years to live. My Papa lived with ALS less than two years. He also had stage 4 emphysema. To have a disease take you by storm so quickly, it is like dumping a bucket of ice over your head and having your breath taken away. This is how the huge YOUTUBE ice bucket challenge came to be. It was meant to bring awareness to the disease and to raise money for not only testing but hoping to one day find a cure so that maybe one day families will not have to deal with losing someone so quickly and painfully. I’m very proud of anyone who supported the Ice Bucket Challenge and also donated to the ALS foundation so that sooner than later, people that are living with this horrible disease can have a cure. My Papa did have a cure though. He had his family by his side at all times. He accepted Jesus, an answered prayer of my mom’s, and he went with dignity. Although it is still very hard for me to talk about, like I said before, this was one of the greatest learning experiences of my life. I now know about a disease that not everyone has the chance to learn about, and having experienced it first hand, it only makes me want to help support and educate others even more. I will forever support the ALS foundation and their journey of finding a cure!
Here’s an Ice Bucket Challenge video compiled from many users from the ALS Association website
What is ALS? (2015). About ALS. Retrieved on June 8, 2015 from ALS Association http://www.alsa.org/about-als/what-is-als.html
Bear, Mark F., Conners, Barry W., Paradiso, Michael A. (2001). Neuroscience: Exploring the Brain. Baltimore, MD: Lippincott Williams & Wilkins
1st Picture: Leung, Jeremy. (2010, September 4). ALS (Amyotrophic lateral sclerosis). Retrieved on June 8, 2015 from http://len.epfl.ch/webdav/site/len/shared/import/migration/ALS1.jpg
2nd Picture: owned by self
The ALS Association. (2014, September 17). Ice Bucket Challenge: Thank You from The ALS Association. [Youtube]. Retrieved on June 9, 2015 from https://youtu.be/ObC0lcC-hLA?list=UUQD7Myz4Ssut-TNOM_N5HAw
Medicaluniya. (2012, May 21). Lou Gehrig’s Disease – Effects of Lou Gehrig’s Disease. [Youtube]. Retrieved on June 8, 2015 from https://youtu.be/pOvvW8gbWSA