Neuronote on ALS

For my neuronote I read the book Until I Say Good-Bye by Susan Spencer-Wendel. I highly recommend this book to anyone wanting to learn more about ALS. Until I Say Good-Bye is about a woman who is married with three children and finds out that she has ALS. One day she has to face reality and realize that she only has a year to live. When she received this horrible news, she decided that she was not going to let her diagnosis of ALS stop her from having a great final year with her family. She decided to take a special trip with each of her children so they would have something special to remember when she was gone. She spent a lot of her final year traveling to many different places, and she made the accommodations at each destination to still enjoy herself despite the odds she was facing. She knew that she wanted to live her final year with joy and happiness, and that is exactly what she set out to do. This book helped to further my learning about ALS because the author was so meticulous when explaining the struggles that she had. We learned about the symptoms of ALS in lecture but reading a personal story of someone really helped make the image clearer of what these individuals go through. So many trials she was faced with during her final year, she was able to overcome. For example, when visiting New York with her daughter she had to have a special cab service to get her around the city, or her sister had to push her in her wheelchair. While visiting the beach with her son, it was difficult for her to go up and down the stairs of her condo, so they rented a condo with an elevator. However, the elevator did not work properly so her loved ones had to carry her up the stairs when she needed to relocate. She explained in the book that when she was sick, she had so many people to care for her. While she described all the things that her neighbors, friends, sister, and husband were doing for her it really touched my heart. Her husband became her primary caregiver and was a loving support for her during this time. Many of the things that she described in the book that she was unable to do, I had not thought about as being an issue for individuals with ALS. Much of the time she couldn’t even read books, because she did not have the strength to hold the book and turn the pages, so she would have her friends or neighbors read to her. She ended up writing the book using only her thumb because it was the only finger that she was still able to use. I chose this book as part of the assignment because I learn best by experiences. While reading this novel I was able to have a visualization of ALS through what I was reading. I was also able to connect with the author and while reading I felt like I had a more personal experience to relate to. While learning about her journey with ALS I couldn’t help but think about how in OT school we have learned about having a top down approach when working with our clients. This book helped me to really want to strive to always see the individual as a person and what they find meaningful in their life before anything else. That is all the author of this book wanted was to live her final year with as much enjoyment and happiness as possible. 

Spencer-Wendel, S., & Witter, B. (2014). Until I say good-bye: My year of living with joy. Leicester: Thorpe.