Nan with the Plan

Reading Inside the O'Briens gave me so much insight on Huntington's Disease.  I have heard of it before, but did not know much about it until recently from the lecture in Neuro Aspects.  This book gave me a real life depiction of what it would look like dealing with HD or any neurodegenerative illness in my future clinical experience.  The author Lisa Genova describes HD as a family disease, and now I have more of an understanding for what that means.  The novel portrays every family members' different way of dealing with Joe's diagnosis.  Some go about their life normally like Meghan where others experience various amounts of guilt, grief, and mental instability like Rosie and Katie.  The O'Briens are faced with a dilemma of whether to find out if they have the HD gene or not, and each child goes about this process differently.   While reading this book, I kept asking myself how I think I would react if my family was in the same situation. 

The Fundamentals of Caring is a hilarious, yet heartwarming movie about the relationship between a boy with Duchenne Muscular Dystrophy and his caregiver.  The boy, Trevor, has a dark, sarcastic, unique sense of humor, and his new caregiver, Ben, seems to be one of the few who can take his banter.  I have seen this movie before and thought it was phenomenal.  I wanted to watch it again with more of an OT perspective, and I am so glad I did.  One of the first things I noticed is at the beginning of the movie, Ben asks Trevor what the one thing he would want to do in the whole world if he didn't have DMD.  Trevor answers by saying he would want to pee standing up, which I'm sure is a very prideful activity as a male.  I loved that scene because Ben had just been through a 6-week caregiver certification course where they preached ALOHA: Ask, Listen, Observe, Help, Ask again.  However, Ben did more than just that.  He found what Trevor values and desires most in life, and made it

Do-Live-Well is a framework of reference used by occupational therapists that ultimately emphasizes "what you do everyday matters."  It has four main sections being (1) dimensions of experience, (2) activity patterns, (3) health and well-being outcomes, and (4) contextual forces influencing activity engagement, or things in the environment.  These sections are further broken down into more specific dimensions.  This framework can help identify missed or disrupted dimensions that interrupt with an individual's well-being.  It aims to empower people in reflecting on their patterns of activity engagement and promote health and well-being.  This framework can be used on all populations and in any setting.  When using this framework, a therapist might assess the client's activity patterns such as habits, routines, roles and rituals, ADL skill level, community involvement, and physical abilities.

For my first Neuro Note, I watched a few videos from Lindsey Becker's YouTube channel.  Lindsey is a woman with spina bifida and happens to be this year's Ms. Wheelchair Tennessee.  She uses a wheelchair in her everyday life, and posts videos on YouTube about how she adapts and modifies her environment to continue living a normal life.  The videos I watched included "Home Adaptations," "Wheelchair user Mazda RX-8 with adaptive hand controls," and "PSA for Package Delivery Couriers for Wheelchairs."  I chose to watch Lindsey's videos for this assignment because I was just informed she will be coming to UTHSC's campus as a SOTA guest speaker.  We also discuss home modifications in class, and I wanted to see what that looked like in an actual home.  In the first video, Lindsey walked the audience through all the modifications in her home including two ramps, shower and closet remodels, as well as kitchen remodeling plans.  It was eye-opening

In today's class, we talked about health promotion and health literacy and what an OT's role looks like in these.  I was unaware of how prevalent health literacy was in our society.  This session opened my eyes to how important it is to make sure clients fully understand every aspect of any medical experience.  We watched a few videos about how health literacy looks in different settings and it can greatly effect a client's healthcare experience, which is part of the IHI Triple AIM.  A really interesting thing we talked about was the growing role of occupational therapy in primary care.  Family physicians are often jam packed with business and OTs can share the role of provide developmental screenings and spend more time with clients to make them feel valued.  This is something I find very interesting and hope there is future job opportunity in this setting.