In the years following her Parkinson’s diagnosis, my wife was reluctant to attend any kind of support group meetings or functions. Her reluctance was, in part, due to the various phases of denial and secrecy that she experienced while trying to come to grips with her diagnosis. Within the past few years, she became more open to the idea of joining a support group and started attending meetings with a local group.
After the first meeting she attended, I naturally asked her about the experience and the other attendees. While she was generally positive about the experience, she struggled with being one of the few “young” people in attendance and with seeing other group members experiencing more advanced stages of the disease. Until recently, I did not fully comprehend the emotions she felt at the time or the courage that it takes for her to continue attending group meetings and similar Parkinson’s events.
A little over a week ago, we attended a Partners In Parkinson’s event in Tampa hosted by the Michael J. Fox Foundation and AbbVie. It was a wonderful and informative event, and my wife was honored to serve as a panelist in one of the breakout sessions. However, for me, the emotional impact of the event was far beyond anything I anticipated. One moment in particular will likely remain in my thoughts for years to come.
The main sessions were held in a grand ballroom that was packed with hundreds of attendees. We arrived at the first session a little late, and the only open tables were at the front of the ballroom. As we made our way around the room, I took note of the people in attendance at the event. Most of the attendees were well into retirement age, and there were a number of people in wheelchairs or walking with the assistance of a walker. What was noticeably absent from the crowd was a representative group of the 1 in 20 people living with Parkinson’s who are under the age of 40, or even the 1 in 10 who are living with it under the age of 50. Simply put, there were very few people who looked to be my wife’s age.
I was overcome with the feeling that my wife simply did not belong with this group. They were at different stages of their lives. They had lived through more experiences and worked entire careers. Most of them probably had grandchildren my son’s age or older. Even ten years after her diagnosis, my wife could not have looked more out of place in this crowd. It was at that moment that I began to truly understand, for the first time, what it must feel like to be a younger person living with a disease that typically sets in at a much later stage in life.
Internally, I experienced a range of raw emotions that I would later share with my wife. Upon reflection, I think the experience revealed that I was still dealing with some form of denial about the realities of her diagnosis. Without question, I was hit with the thought of “why did this happen to her” as I looked around the room.
Through all of this, my wife displayed the courage and grace that has defined her over the past decade. She was engaging, informative and candid as a panelist, and she spent a long time talking with other attendees after the breakout session. It was obvious that the audience appreciated the opportunity to hear from and connect with another person living with Parkinson’s. There was a sense of unity, as there should be, regardless of any age difference.
Notwithstanding, my experience at the event left me with an even greater sense of urgency to promote awareness of young onset Parkinson’s disease and encourage much greater involvement among those living with the disease at a younger age. The Partners in Parkinson’s event was a terrific opportunity to gain information about groundbreaking research, to learn about current views on medical and holistic treatments, and to connect with the Parkinson’s community. Why was the event so poorly attended by those living with the disease under the age of 50? I suspect many of those people are on a journey similar to what my wife experienced the first seven (7) years after her diagnosis – plagued by denial, secrecy and even depression. As a community, we must continue the commitment to reaching those people and to changing the stereotypes and misperceptions that contribute to their feelings of confusion and isolation.