Neuro Note #2

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Sitting Pretty Lolo

The journey of Lolo Spencer peaked my interest because of the non-traditional characteristics of Lolo's ALS. This is a story about a debilitating disease that usually takes the lives of those diagnosed after 2-5 years, yet 18 years later and Lolo is still telling her story through inspirational YouTube videos that have touched the lives of many. Lolo was diagnosed at the very young age of 14 when she started feeling extremely fatigued, which is unusual for any healthy person, let alone a child. She discusses in an interview with CNN that it was a devastating diagnosis that flipped her world upside, but she decided pretty quickly that she would live her life to the fullest, and that ALS would not be her story. Lolo is now 30 years old and must get around in a power wheelchair due to extreme weakness throughout her body. What I enjoyed most about learning of Lolo was how inspirational she has become to the disabled community. She represents her community by modeling for Tommy Hilfiger and Adidas and showing that disabilities are just as beautiful. The impressive YouTube channel that Lolo has created is probably the most fascinating part of this story. She has a variety of videos that discuss living with a disability such as; Travel tips for people with disabilities, dating with a disability, and what not to say to someone with a disability. Her channel is a learning tool for not only those managing an illness, but for everyone who interacts with those with a disability. I would recommend her YouTube channel to everyone in healthcare, and especially OT’s, as this is an amazing way to gain empathy and understand what a client with ALS is going through. It is also an opportunity to listen to first-hand experiences on how to manage this illness. Lolo’s story is proof that although ALS is a life-altering disease, it is possible to find the positives in any situation, and life doesn’t have to be not amazing!

 Bergeron, R. (2019, June 08). Diagnosed with ALS at 14, she's now a disability lifestyle influencer. 
Retrieved from https://www.cnn.com/2019/05/31/health/turning-points-lauren-lolo-spencer-
als-disability-lifestyle-influencer/index.html

 (n.d.). Retrieved August 13, 2019,                    
 from https://www.youtube.com/channel/UCKhnl8iyRPa1TNJrMO-UN-Q

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