Neuro Note #5: ALS Ice Bucket Challenge

Ted Talk: Meet the mom who started the Ice Bucket Challege by Nancy Frates

Frates, M. (2014, October). Meet the mom who started the Ice Bucket Challege. [Video File]. Retrieved from https://www.ted.com/talks/nancy_frates_why_my_family_started_the_als_ice_bucket_challenge_the_rest_is_history

Since my previous posts were mainly about blogs, I decided to change it up and watch a Ted Talk.  I decided that I wanted to learn more about one of the neurodegenerative disorders. Upon my search, I found a talk about how the ALS ice bucket challenge began. Nancy Frates’ son, Pete, was a 27 year old college baseball player. During the playoff game, a fast ball hit his wrist, and his wrist immediately went limp. After going to a neurologist and learning that he had ALS, not a fracture, break, or sprain, his family was shocked. They learned that ALS had no cure and no treatment, and the family decided that they wanted to raise awareness for ALS and work to find a cure. Pete’s younger brother became his caregiver, and Pete’s mom, Nancy, discussed how she watched her son go from an amazing baseball player to an individual who is completely paralyzed, and now, he can’t swallow. Within 3 weeks of the start of the ALS ice bucket challenge, celebrities were joining in making videos and posting to social media, and within 4 weeks, the ALS ice bucket challenge was global. This brought new trial drugs for ALS and money for research.  When the ALS ice bucket challenge came out, I had no idea what it was, so it definitely helped bring awareness to me. I remember watching countless videos on instagram and facebook. Some things that struck out to me most from this TedTalk were that she said that her son Pete knows his purpose now on earth, and she knows her purpose as well. Some people never find their passion/mission in life, and she alluded to the fact that Pete was lucky that he found his. She also said that we should start each day being positive, proactive, and when her son is still going to the baseball games driving a power wheelchair with eye gazing technology, we need to remember that it was probably challenging for him to put himself out there like that. As an OT, it will be important to remember this as well, and to respect the fact that neurodegenerative conditions like ALS are progressive. While I really cannot imagine what it would be like to have a condition like this, I know that as an OT, we need to help our clients have a voice and advocate for them. I hope that during my lifetime, we see some sort of treatment for ALS. I enjoyed hearing about the condition from a mother/caregiver's perspective, and I am so amazed by Nancy's uplifting, positive spirit about her son's condition. I hope that we as OTs can be the uplifting and positive spirit for our clients.