A Patient’s Tale

“The good physician treats the disease; the great physician treats the patient who has the disease.”  William Osler

An Educator: I have had the privilege of being a medical school educator since 1987 (28 years).  The work includes lecturing (to a class of 180 students), small group facilitator (36 students), course management/administration, and curriculum development (our new Immunology and Hematology courses).

A Patient: An important aspect in many medical school courses is an interview/presentation of a patient, usually accompanied by the patient’s physician.  The course director embraced the idea about me being a patient during her Neurology-related Blocks.  For the first time in my teaching career, I would be ‘the patient’. This presentation took place twice: first, in our current 2nd year medical school curriculum in the MS-2 “Brain and Behavior” course (January, 2015); and in our new 1st year medical school curriculum in the MS-1 “Neurology” block (May, 2015).

A Patient Presentation: Why do we present patients to our medical students?  Several reasons come to mind but they mostly revolve around reminding the students that we treat people with diseases.  From my perspective, as someone with Parkinson’s, I wanted to share my insight describing my medical journey. And as a medical educator, another goal would be to relate science, education, and  personal reflection to the overall experience as a patient with Parkinson’s.  This blog is a direct result of the first presentation when a medical student asked me if “I was considering writing a book on my experiences?” My answer was “maybe I would start a blog.”

A Patient’s Tale: There were 5 parts to my ‘Patient Day’ presentation [While I did most of the talking, my Neurologist) and the course Director (also a Neurologist) were both active participants with numerous cogent comments and they nicely corrected my miscues.]:

1. Path to Parkinson’s Diagnosis [osteoarthritis in hand, swallowing/esophageal studies, stiff neck, EMG study to rule out ALS possibility, treadmill study leading to cardiac catheterization procedure to rule out CAD heart issues, and then finally leading to proper diagnosis of Parkinson’s]. Please see this post for the description/details:
https://journeywithparkinsons.com/2015/03/20/parkinsons-dazed-and-confused/ ;

2. Importance of the relationship/communication/trust between patient with Neurologist and Internal Med Physician.  Please see this post for the description/details:
https://journeywithparkinsons.com/2015/04/06/physicians-in-the-constellation-of-care/ ;

3. Strategy for treating my Parkinson’s [traditional, experimental and complementary and alternative medicine (CAM) medical approaches] combined with exercise, yoga and meditation. Please see these posts for the description/details:
https://journeywithparkinsons.com/2015/03/14/exercise-and-parkinsons/
https://journeywithparkinsons.com/2015/03/27/complementary-and-alternative-medicine-cam-in-parkinsons/
https://journeywithparkinsons.com/2015/04/13/isradipine-shutting-the-door-on-calcium-channels-to-slow-the-progression-of-parkinsons-2/

4. Fear of the unknown-future-Parkinson’s progression. Please see these posts for the description/details:
https://journeywithparkinsons.com/2015/04/09/imagine-yourself-then-imagine-yourself-now-with-parkinsons/
https://journeywithparkinsons.com/2015/04/30/how-do-you-feel-when-you-wake-up-each-morning/
https://journeywithparkinsons.com/2015/04/18/prose-to-parkinsons/

5. Questions and answers between the medical students and patient/physicians.

Determination, Willingness to Share, Courage, and Vulnerability: Giving a lecture is  usually focused, (hopefully) informative, and for me, easy to do. By contrast, being presented as a patient gave me unusual feelings of angst and stress. However,  I was determined to be presented, and I truly wanted to share my story with both medical school classes.  I gathered all the courage I had and became as vulnerable as possible, and began speaking.  By the end of both presentations, I was exhilarated but totally spent emotionally.  If asked to do this again next year, my answer would instantly be yes.

In her book “Daring Greatly”, Brené Brown aptly described courage and vulnerability:
“Courage starts with showing up and letting ourselves be seen.”
“Vulnerability sounds like truth and feels like courage. Truth and courage aren’t always comfortable, but they’re never weakness.”

Medical Student Feedback: Simply put, it was positive, supportive and incredibly nice. A few examples are included below:

“Thanks for sharing your story with us today. You’re hugely popular in our class and we all know how much you care about us and our education…Remember, just like you have always been there for us, we are always here for you. Even though it sounds like you are doing great without us! You are such a determined and optimistic person, and the way you have reacted to the last 3 or 4 years, with your exercise and yoga, stretching, reevaluating priorities while still putting all your heart into helping us, surrounding yourself with friends and close colleagues, giving time for yourself and golf (awesome idea!), is such a great approach that I think you’re going to do just fine.”

“I just wanted to say thank you for sharing your story with us today. I know that takes a lot of courage and vulnerability to do, and I appreciate you doing so to help us learn. I really admire your commitment to what you love that you have shown since learning of your diagnosis.”

“THANK YOU infinitely for sharing your incredible journey with all of us today. You are so well respected among so many people! It means a lot to us, as students, to hear the story first-hand by someone like you.”

“Thank you so so much for talking with us today! We appreciate you so much. You have made the med school experience so much more personal and really illustrated our faculty care for the students…I can’t highlight enough what a great positive influence you have been in our experience in this curriculum! Thank you!”

*Photo credit thanks to H. Powell and S. Hartsell.

“Life, Stormy says, is not about how fast you run or even with what degree of grace. It’s about perseverance, about staying on your feet and slogging forward no matter what.” Dean Koontz

Cover photo credit:http://vineverastores.com/wp-content/uploads/2015/03/shutterstock_154144709.jpg