Working with Parkinson's
Editor’s note: Each year doctors report 50,000 new cases of Parkinson’s disease, a progressive neurological disorder. According to the National Parkinson Foundation, about one-third of those diagnosed will remain active in the workplace. This article provides one example of how a successful professional with Parkinson’s continues to navigate the working world.
When I was diagnosed with Parkinson’s disease (PD) at age 30, I had two simple questions for my neurologist:
1. Will the disease kill me? (No, you die with PD, not from it.)
2. I’m concerned that any medicine that I take may result in hair loss—should I be worried? (The doc actually revealed later that it was one of the dumber questions he had ever been asked.)
Samantha Weil '17, Sunita Williams '17, and Evin Billington '16 filmed a documentary about Bryan Roberts and Barbara Howard, and it was a finalist at the College Television Awards. You can watch it here:
Disclosing an Illness
Once my two most pressing questions were answered, my thoughts changed to, “When—and how—do I tell people?” There is no script to follow to reveal this condition to others. Somehow I could imagine saying, “Dad, I have cancer.” Or “Mom, the tests have revealed my deepest worry: I have male pattern baldness.” But I never could conceptualize even initiating the conversation about Parkinson’s disease.
This was also happening at a time in my life when I was really hitting my stride: I was a candidate for a number of assistant dean jobs, I was training for the New York City marathon, and (most importantly) my wife was pregnant. I did not know that much about Parkinson’s, but I did know that it doesn’t get better and that my symptoms were becoming too noticeable to ignore.
The best way to describe having Parkinson’s is that no two PD patients have the same symptoms. Similar to baseball, it is an individual sport in a team game. People are usually more aware of the motor symptoms of PD (such as tremor), but there are many non-motor symptoms as well. See the sidebar for a breakdown of the symptoms of PD by The Michael J. Fox Foundation.
My main symptoms are right arm tremor and rigidity, which are not the end of the world—unless you want to keep your diagnosis hidden. In 2011, I was hired as the assistant dean in the Park School of Communications, and I chose not to disclose my Parkinson’s. As the disease progressed, I began to worry about how I appeared in my role as a dean. When my arm would tremor during presentations, what did people think?
I’ve always been a terrible sleeper and, instead of my usual nightly routine of reading idiotic comments on message boards about the state of the New York Mets, I instead began to educate myself about all things PD. Many organizations focus on Parkinson’s research and advocacy, but I most identified with The Michael J. Fox Foundation. Michael J. Fox and I were diagnosed with PD at the same age, and I had always admired his approach to life. I also was impressed by the Fox Trial Finder, a tool that pairs researchers with patients to push clinical trials forward.
I realized that I had a decision to make: I could continue to hide my disease and lead a life that would become more diminished each year, or I could go public and dedicate myself to advocacy, fundraising, and—eventually—curing Parkinson’s disease in our lifetime. My path was clear, but larger questions loomed: “How do I tell the Ithaca College campus?” and “Will I lose my job?” I decided to do a sit-down interview with the Ithacan and lay everything out on the table.
I hate to kill the suspense, but since you are reading this article in ICView, you can jump to the conclusion that I did not lose my job. What did occur was still surprising: the outpouring of support from the IC community is something that I will never forget. It can often be hard to think of organizations like family when we throw around the terms “resource efficiency” and “strategic sourcing,” but the work environment at Ithaca College, and at the Park School in particular, is truly wonderful.
In fact, Parkinson’s has touched so many on the IC campus that my coworkers and students were far more knowledgeable than I had expected. I also heard from employees who had been diagnosed with PD but were keeping it quiet. The response from the campus affirmed my decision to go public with the diagnosis, and it strengthened my resolve to contribute to a cure.
Coming out of the “PD closet” also brought me a new friend. At the time of my announcement, Barbara Howard, associate dean in the School of Business, had just been diagnosed. Barb shared her story with me, and during our time together at IC, it has been invaluable to have a colleague— and an associate dean, no less—who can understand some of the day-to- day struggles that come with this chronic illness.
Barb has only recently gone public with her PD, but during our time working together, she has been the real catalyst in pushing me to participate in clinical research. I think anyone would feel a bit of helplessness after being diagnosed with an incurable neurological condition at age 30, but I receive no sympathy from Associate Dean Howard, and that is exactly what I need. Complaining helps no one; action does.
The Power of Media
The support that I have received from the Ithaca College community has allowed me to increase my involvement with The Michael J. Fox Foundation. Additionally, we are constantly reminding our Park students about the power of media and how it can be used for social good. This must be more than lip service: we all need to lead by example.
I spent many weekends on the road during the fall semester speaking at the massive Fox Foundation public health initiative called Partners in Parkinson’s. These events provide a wealth of information to patients and their caretakers while also stressing the importance of good research and clinical trial participation. My work with the Fox Foundation has allowed me to meet some amazing people and, while I probably would not choose to have Parkinson’s disease, the experience so far has made me a better dean and a better person.
The success that I have had in managing the disease up to this point is highly correlated with the supportive work environment that Ithaca College has provided. The opportunity to work in the Park School with some of the greatest students and creative minds in the field of communications makes those days worth the fight when the symptoms of the disease are more prevalent. My attitude is not, “Why me?” but instead one of, “Who better than I to deal with Parkinson’s?” I am surrounded with smart problem solvers every day on campus, and that inspires me to keep moving forward in the quest for a cure.