You're Not You

Neuro Note 3 OT 537

The summer between fifth and sixth grade my (new) friend Ali lost her dad to a degenerative disease called ALS. I knew how sad it was and I was so heartbroken along with everyone else at vacation bible school and in our little sixth grade class. Over the next three years of middle school Ali and I were extremely close, however she rarely talked about her dad.

Image retrieved from:
google images

       Now thirteen years later I feel like I have a better understanding of what Ali and her family went through and maybe why she never really talked out it. Following the OT 537 lecture on Amyotrophic Lateral Sclerosis, I decided to watch the movie "You're Not You" about a woman, Kate, in her thirties diagnosed with ALS. The movie following this fictional character as she navigates her final years and the progression of the disease.
     Prior to the lecture and movie, all I knew about ALS was that it took my friends dad young and there was an ice bucket challenge to raise awareness. However I now feel like I have an understanding of what happens to an individuals body and the differing mindsets that one goes through. In the movie it is abundantly clear that Kate is of sound mind and is struggling with the people she knew prior to her diagnosis. "You're Not You" dives into what a diagnosis like ALS does to not only an individual but the support system as well.
      Kate's marriage struggles following her diagnosis, her husband is caring for her but begins to stray from their marriage and her friends begin to treat her differently. Because of this Kate develops a very strong relationship with her new caregiver. Together they join an aquatic therapy group and Kate is able to meet friends in similar circumstances. Her overall mind set is improved and she is able to enjoy her last months. SPOILER, in the end she is able to make amends with her husband and friends and they have their time together as well.
      I do believe that this movie brings to light issues that Occupational Therapist are responsible for addressing which is support system education and assistance. I know my childhood friends family could have found benefits in additional supports. This lead me to research ALS support groups. For the purpose of this blog I searched the state of Tennessee. I found that there are 5 support groups across the state located in the Tri-Cities, Knoxville, Chattanooga, Nashville, and west TN. I will link that information below.

image retrieved from google images.

      I also looked into resources for children. I found that the ALS association has linked approximately 17 sites for more information for children to learn about or cope with a family member having ALS. This includes grief camps and counseling, webinars, and Facebook pages. All incredibly help resources for families to build a community of others who understand what they are going through.
     Overall I think raising awareness about ALS and the effects it has on families is imperative and movies like "You're Not You" are essential to that process. Occupational therapy plays such an integral role in helping individuals and families learn about what is going to happen next and make sure they know that they are not alone.


Links:
You're Not You: Ways to Watch
Tennessee ALS Support Groups
ALS Children's Resources


Reference:

Children's Resources. (n.d.). Retrieved from http://webdc.alsa.org/site/PageServer?pagename=DC_8_PALS_Resources_Children


Support Groups. (n.d.). Retrieved from http://webtn.alsa.org/site/PageNavigator/TN_8_SupportGroups.html?_ga=2.57776418.947242325.1566101634-5536838.1564614921&_gac=1.116540148.1566147328.CjwKCAjw7uPqBRBlEiwAYDsr1xdM_DzPu-ejSGqdjc6DorEvCOlo4rDC6VGgw8AtNb7bcHpArxjFXRoC8w4QAvD_BwE