Neuro Note -- Life After ALS

In 2015, the ALS ice bucket challenge hit almost every social media platform across the nation to bring awareness to this detrimental disease. It was a major hit and I even participated in the challenge with my mom to support our family friend who was diagnosed with ALS in 2011. Therefore for my fifth neuro note I chose to read the article series Life After ALS: A Caregiver's Journey. Glynis, the author of these blog posts, talks about her first-hand experience with ALS after her husband, Vance, got diagnosed in 2015. She explains that Vance was not surprised with his diagnosis, because he too was his mother's caregiver when she was diagnosed with ALS. From our lecture on ALS we know that familiar (FALS) accounts for only 5-10% of cases and can make the diagnosis quicker and easier. With familiar ALS, there is a 50% chance that it will be passed down from parent to child. Vance was diagnosed with a specific type of ALS called Bulbar Onset ALS, which means, the motor neurons that are damaged and affected are mainly his speech, swallowing and respiration. His core muscles were the first muscles to be affected, which led to shortness of breathe. He was on a BiPap machine since the start of his journey, which pushes air into his lungs, then pulls it back out, basically acting like his diaphragm. All within the first eight months, he was was dependent on a BiPap, a cough assist machine, a walker, a scooter, a motorized wheelchair, a suction machine, a feeding tube, medications, therapists, and hospice care. 

To further my learning, I decided to look into the ALS Foundation For Life website. A quote on the website says, "Remember yesterday, hope for tomorrow, but live for today." This quote was exactly how Glynis and Vance decided to live their lives after the diagnosis. This foundation is committed to providing funding for medical equipment, home modifications, and technological devices allowing patients some independence and sense of dignity. This foundation also gives insight to the disease and promotes public awareness by hosting events. Since I also live in the wonderful city of Memphis, I have to also mention an amazing fundraiser and awareness walk our city puts on called the Memphis Walk which will be held on October 21, 2021. Fundraising through the walk drives bold and urgent innovation as our community marches together towards treatment and ultimately a cure for ALS.

This article series is truly inspirational and heartfelt. Regardless of Vance's diagnoses they were determined to be happily married and never lose sight of that even through the darkest of times. They loved each other up until the very end. This article put into perspective all the many challenging things that someone has to do in order to properly care for someone with ALS. Something that I will take from this article series and into my future OT career, is to never underestimate the patients caregiver/spouse/family's ability to properly care and do whatever possible to make sure their loved one with ALS doesn't suffer. If you are interested in learning more about this story, I will link the post down below! 

Life after als: A caregiver's journey. Life After ALS: A Caregiver's Journey. (n.d.). https://lifeafterals.wordpress.com/.

The time is now to defeat als! Memphis Walk - The ALS Association. (n.d.). http://web.alsa.org/site/TR/Walks/Tennessee?pg=entry&fr_id=14723.

Our goal is to improve the quality of life for those living with als. ALS Foundation For Life. (n.d.). https://www.alsfoundation.org/.