The Power of Love

Amyotrophic Lateral Sclerosis, also known as ALS, is a progressive degeneration disease affecting motor neurons that leads to an effect on all of the voluntary muscles. Since learning about this disease in our Neuro Aspects course, I read an article about Ray Spooners who was diagnosed with ALS at forty - six years old. In this article, Ray and his wife Rae are interviewed about how the diagnosis of ALS for Ray has changed their life, how they are adapting to these changes, and how they continue to support each other through this journey. I chose to read this article to help further my understanding of what ALS is and how it can affect someone who has it. Before grad school, I observed an OT working with a client that had ALS but I never understood what their symptoms were. After learning about their symptoms in class, I've learned that ALS affects both upper and lower motor neurons that can lead to spasticity, tightness, weakness, atrophy, loss of reflexive movement, and muscle cramping. 

Prior to being diagnosed with ALS Ray was an avid bike rider. After he was diagnosed with ALS his top priority was to complete a cross country bike ride. On October 18th they started their journey, and after a couple of broken bones, one functioning arm, three trips to the ER, and blood clots Ray completed his ride on November 19th helping to raise $80,000!  Ray loved being creative and was a jeweler by trade. His wife mentions that most items in their house are from things Ray has made along the way. This part was very sad, but Rae said that the saddest part of this diagnosis is watching her husband's beautiful hands slowly deteriorate more and more each day. It is important as OTs that we give just as much attention to the caretakers and ensure their mental health is okay, and if it is not then provide them resources and education to help them. This disease is unfortunately just as taxing mentally. 

What struck out to me reading this article was how supportive and adaptive Rae is for her husband. Rae said "This isn't about one partner or family member putting their life on hold to help care for the other. It's about a partnership moving into the next phase of life together". Currently Ray is now unable to communicate verbally, and his son is helping him create a communication system called "Rayism" on an eye gazing operated system. Ray's wife does everything she can to him live his life like he wants. Instead of using a van to carry Ray around, Rae will help get her husband on his tricycle and will be right by his side the entire time. Rae mentions that when they were at a doctors appointment the doctors gave Rae a big book on how to be the caregiver. Rae looked at them and told them that they are going to do this the Rae and Ray way where they won't follow a guide, and do what's best for them.

I highly recommend this article because it gives insight to not just the person being diagnosed with ALS but the whole support system. I think it is important to hear the caregiver's stories as well and learn how they are adapting their life to help the ones they love most.  

Reference 

Erica Simon. (2016, June 22). The Spooners are a definite example of “relationship goals” — and the power of love. - Upworthy. Www.upworthy.com. https://www.upworthy.com/the-spooners-are-a-definite-example-of-relationship-goals-and-the-power-of-love