Neuro Note 5

 "The Big Idea My Brother Inspired" By Jamie Heywood 

    In this Ted Talk, Jamie Heywood talks about when his brother, Steven, was diagnosed with  Amyotrophic lateral sclerosis (ALS) at the age of 29. Also known as Lou Gehrig's disease, ALS is a progressive nervous system disease that affects nerve cells in the brain and spinal cord. This disease starts killing motor neurons in the spinal cord which causes loss of muscle control. Early symptoms include muscle twitching, slurred speech or weakness of a limb and eventually people with ALS lose control of the muscle needed to move, speak, eat, and breathe. No one knows the exact cause of ALS and there is currently no cure, with the average lifespan being three years.  

    Although ALS is a horrible disease, Jamie and Steven saw it as a gift because they began to learn of a new way to look at life. They had an amazing journey as a family and decided to do something with the diagnosis in a positive way by thinking of a new way to approach healthcare. Jamie, Steven, and Jeff Cole, a friend from MIT,  started a company called Patients Like Me where people with different diseases can upload current information about their symptoms, medications, how they feel, and many other components. It is the world’s largest personalized health network and helps people find new options for treatments, connect with others, and take action to improve their outcomes. They are then able to turn this information into data and compare it to the data collected from thousands of other patients. This data captures the influences of different lifestyle choices, socio-demographics, conditions, and treatments on a person's health. They hope to find new clues about what makes us sick or healthy through all of the information collected as well as understand what factors (medical, behavioral, or environmental) may advance or reduce disease and optimize health.  Heywood talks about how he wants to take this information and go beyond the simple model of what a record is. The goal of this network is to improve the lives of all patients through knowledge derived from shared real experiences and outcomes. 

    I chose this Ted Talk as part of my assignment because it is inspiring to hear about how someone can turn such a horrible disease into a way to positively impact thousands of lives. Patients Like Me also does more than connect people with ALS, but also works with patients who have MS, HIV, cancer, developmental disorders, and so much more. This network allows individuals to connect with people who are struggling with the same things they are.  As a future occupational therapist, I think this could be a great resource to give to my future clients who want a support group or who are interested in the trajectory of their disease through others. I highly recommend anyone who is interested to look further into Patients Like Me.  


Resouces

    Heywood, J. (2009). The big idea my brother inspired [Video]. Ted    Conferences. https://www.ted.com/talks/jamie_heywood_the_big_idea_my_brother_inspired/details. 

    Mayo Foundation for Medical Education and Research. (2019, August 6). Amyotrophic lateral sclerosis (als). Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/amyotrophic-lateral-sclerosis/symptoms-causes/syc-20354022. 

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