My Parkinson Story is a weekly column featuring member of our community, sharing their stories with PD. We are interested in sharing a wide array of experiences, including yours! PD looks different in everyone, and affects everyone differently, including friends and family of those with PD. If you’d like to share your story on our blog, please email us.
I am a pediatric surgeon; that is, I was a pediatric surgeon. The scope of my practice included everything from cancer to traumatic brain injury to kidney and liver transplants. The features of such care for children include the extra time needed to explain the proposed unique aspects of having an operation that might include an incision, stitches, post-operative pain control, and recovery milestones, but equally important is a similar commitment of time and attention for the parents of that child and their responsibility along with their anxiety when dealing with surgical care for their child. Then of course there is the operation itself, at times by necessity done on a small body, for example, in a premature baby. In order to address these particular needs for each surgical procedure, I adopted the practice of extending my time with the child and family and drawing a picture of the proposed operation for both the child and the parent.
Fortunately, I had the best possible pediatric training — at the Children’s Hospital of Philadelphia. My training director as well as my first partner was C. Everett Koop who was publicly recognizable when he became Surgeon General of the US Public Health Service. With Koop and others supporting my development, and with twelve years of practice experience, I eagerly sought a leadership position in pediatric surgery at a major children’s hospital, preferably one already conducting the training of future pediatric surgeons. As a Midwesterner by birth, the opportunity to stay in the area for my first position— as the Surgeon-in-Chief at Cincinnati Children’s!— was tremendous. Joining a skilled faculty as well as a training program for future pediatric surgeons was a dream to be fulfilled. Nine years later I accepted a similar leadership position at Boston Children’s Hospital, where I was also the Robert E. Gross Chair in Pediatric Surgery at the Harvard Medical School. One more move followed in 2007 when I accepted the Surgeon-in-Chief position at Children’s Hospital Colorado in Denver. The opportunity there was the design, building, and utilization of an entirely new children’s hospital located on the School of Medicine campus.
During this last decade of my career, I began in retrospect to notice a change in my body. I began to see twitching and what appeared to be an insignificant tremor in my non-dominant left hand. Initially I did not seek evaluation. However, again in retrospect, another strange event occurred. During a nurse-physician training session designed to improve communication, a senior nurse said to me, “Mory, I have a problem, I can never tell what you are thinking.” I was thrilled by this confession, but later I instead wondered if my early demonstration of a flat affect was rather an early appearance of the flat affect so typical of Parkinson’s Disease.
About 5 years into my Colorado position I noted further body changes. My left-hand tremor persisted being quite mild and not interfering with my operative technique. My flat affect was a trait that I clearly possessed. Because of these considerations, I decided in December 2008 to obtain a neurological evaluation. After completing a clinical assessment, I spoke with the neurologist, and he believed quite confidently that my findings and my diagnosis was that of an “intention tremor”. He suggested that the prudent next step was a reevaluation in 6 months. When I returned and the reevaluation was completed, the neurologist stated that he had likely erred and that he felt the correct diagnosis was Parkinson’s Disease. The diagnosis was based on the findings of the tremor, the flat affect, as well as my poor and deteriorating artistry of those pictures I had drawn of the proposed procedure for patients and their families. These signs and symptoms were all likely compatible with the early findings of PD.
I had loved my career and the privilege of caring for children and their families. However, I subsequently made the decision in 2009, after 32 years in pediatric surgery, that I would step away from my surgical leadership position and my surgical practice. What I had learned over the years was the recognition that the most effective surgical leaders must also be seen as having a very busy operating room schedule. Although I still enjoyed my practice, I had to admit that I could no longer handle such a busy and complex schedule. It was a great ride, a career that I could only have dreamed of—the children and their families, the technical procedure, the recovery back to pre-operative status, and the team play of my nursing and physician colleagues. So I had to let Parkinson’s win that battle but I promise not to let Parkinson’s Disease win my war!