While driving home from the airport in September 2013 after a business trip, my mind was focused on the outcome of my wife Christie’s appointment with a neurologist. For several months she had been experiencing light tremors in her left arm and leg and we hoped the neurologist’s insights would be easily explained.
When I walked into our Florida home that beautiful sunny day, it became very clear the doctor’s diagnosis would cast dark clouds over us for a while. There were tears that flowed this day along with fear and frustration as I tried to understand why the disease came to live in her strong athletic body. This first reaction has not been long-term because Christie is determined to be positive while demonstrating resolve and resilience. As a care partner, I too need to demonstrate these same behaviors.
Parkinson’s disease — what is it and what is the long-term impact on Christie’s quality of life? Answers to these and many other questions became the mandate in our home. I only knew of Michael J. Fox, Muhammed Ali and Davis Phinney as famous celebrities who were diagnosed. I didn’t recall how the disease had impacted their lives, but now I would know through first-hand experience what living with Parkinson’s meant. How could you understand Parkinson’s without relevant medical knowledge? This is where my research journey would begin.
In our connected world, the quest for knowledge and answers took us to The Michael J. Fox Foundation (MJFF) website. We found a wealth of information about the disease for patients and care partners as well as monthly webinars that discussed many relevant topics and the latest research on the disease. This was a great reliable resource in addition to our movement disorder specialist.
We’ve attended several of the events hosted by the Foundation including this year’s Parkinson’s IQ + You in Phoenix. It was at this event, that I heard how the Fox Insight research study is also for care partners. I knew that Christie was taking part, but didn’t realize the care partner’s perspective is also vital in the research. After being asked if I would consider joining the study, the answer was of course. I feel that I have a perspective which is valuable for the researchers aiming to find a cure for the disease.
Completing my first study visit which consisted of online questionnaires went very well and it didn’t take a lot of time. I discovered that I could share insights and observations in each section of the survey. I would encourage other care partners to join the study because we have some different insights that may help unlock the keys to discovering a cure. As a Human Resources professional that provides knowledge, experiences and solutions to different leaders in our organization to help maximize its talent, this similar approach has been valuable as a care partner for Christie’s daily experience with Parkinson’s and a contributor to the Fox Insight study.
Interested in participating in online research? Join Fox Insight, MJFF’s online clinical study where people with and without Parkinson's share information that could transform the search for better treatments. Register at foxinsight.org.