Spotlight on Allen (USA)
Telling the World

By Allen Rabinowitz

 
When I was first diagnosed with Parkinson’s disease (PD) in 1999, the little I knew of the disease was what I had read about Michael J. Fox’s own diagnosis.

One of the first things I did was to research everything I could about the disease online, and after only a few search sessions I had broadened my knowledge considerably. 

There were two things, however, that I couldn’t have anticipated. First, how important it would be to educate others about PD, and second, the unexpected – and in some cases positive – ways that that living with PD would change the direction of my life.

The first time I realized that I needed to share the “whole story” about PD with others was when I told my family. My father and mother couldn’t believe I had developed the condition since no one in our family had ever had it. 

I could see that my son-- who was nine years old at the time—was the most difficult to tell.  Not only was he worried for our future, but also frightened that he would one day have PD. 

When I told some close friends and coworkers, they were well-meaning but just couldn’t understand the ramifications of their actions. 

With all these people, I needed to help fill in the gaps so they understood more about PD and what living with it means. 

My wife was incredibly supportive from day one, and took it one step further by doing her own research and finding support groups. This led to one of the “unintended consequences” of my diagnosis: my wife became so committed to advancing the role of the caregiver that today she is co-national president of the Well Spouse Association, an organization for spouses of people living with chronic illnesses.

In most cases, however, it was up to me to educate people – and it took a few months before I realized this. It became very important to me to give others a realistic but also hopeful perspective on PD. People would need to know that while the disease isn’t immediately fatal, there was no known cure at this moment. They would also need to know about the important steps I was taking, like participating in clinical trials at a local university renowned for its work in PD. Just as important, I would need to show people that I wasn’t ashamed of having PD, to help them feel more comfortable talking about it.

Over the years, I became more comfortable and effective telling my story, and began speaking at local colleges’ “lunch and learn” programs for future nurses and physical therapists. I realized that I had developed a knack for public speaking. Another surprise was that Parkinson’s led to my discovering that I have a passion and a skill for art. Today, art brings great joy to my life – and provides much-needed comfort given the sleepless nights and other distressing consequences of life with PD.

After 17 years living with and speaking about my diagnosis of Parkinson’s disease, I can confidently tell you: do not be ashamed and never give up hope. Scientists are searching for a cure every day, and when we tell our stories of living with PD with conviction and purpose, we are doing a world of good for ourselves and others.


Editor’s note:  “Allen has advised UCB on patient issues related to Parkinson’s  Disease.”