Background Information
I am Bret Parker, a 51-year-old native New Yorker who was diagnosed with Parkinson’s disease when I was 38 (more about that below). I am Executive Director of the New York City Bar Association and previously I was an attorney at a variety of companies and law firms after clerking for a judge. My wife, Katharine, is a federal magistrate judge and we have two sons, Matt and Ben, who are both in college.
I have an incredible support network of friends, family and work colleagues. I’m also co-chair of the Patient Council of the Michael J. Fox Foundation for Parkinson’s Research and created a Facebook group for young-onset PD patients, which has over 400 members. I enjoy running, biking, reading, watching tv/movies and listening to music.
Five Questions
How did your PD diagnosis come about?
I was 38 years old and the only symptom I noticed was a slight tremor in my right hand when I poured a 2-liter bottle of soda. I actually thought it might be carpal tunnel syndrome. My primary care doctor sent me to a neurologist who spent only 10 minutes with me, watching me walk, tap my finger and do some other seemingly-odd activities. When he said I had Parkinson’s disease, I was shocked and knew so little about it that my first question to him was “will I die from this?” A serious diagnosis was so unexpected that I didn’t even bring my wife with me to the appointment so I had to go home and tell her. It was one of the most upsetting moments of my life and I still remember it vividly. We then found a movement disorder specialist (it was tough to find one that was recommended and could see me relatively soon). The doctor spent nearly two hours with us and reached the same conclusion, but at least I felt that I was carefully diagnosed and I received a lot of helpful information.
I took very little medication and told very few people for the first 4 ½ years. Gradually, my symptoms worsened bit-by-bit to the point where others were starting to notice the rigidity and stiffness in the right side of my body so I decided to take control over the situation. I wrote a blog for the Forbes web site to “out” myself and sent an email to friends and family with a link.
What are the more significant challenges you face, and how do you meet these challenges?
My symptoms over the past 13 years have increased, but luckily I am still doing everything I did before diagnosis even if some activities are tougher. On top of increased rigidity and stiffness on my right side, I experience tremors, cramps, fatigue, sleeplessness, trouble concentrating, extremely diminished sense of smell, completely illegible handwriting and a host of other symptoms. It’s really hard to manage the symptoms and a busy job (especially when stress, concentration, excitement or lack of sleep exacerbate the symptoms), but keeping as mentally and physically engaged as possible seems to help. I take naps when I need to rest and get massage frequently.
How do you cope with having PD?
I began getting involved with the Michael J. Fox Foundation, starting with doing one Team Fox grass roots fundraising event a year, often a bucket list activity or something that would motivate me to exercise (a marathon, skydive, triathlon, mountain climb, etc.) Last year, I did my craziest event of all and completed the World Marathon Challenge finishing 7 marathons on 7 continents in 7 straight days.
For me, doing Team Fox activities and raising money/awareness are the most productive things I can do. Since I’m not a scientist, I’m not going to be the one to find a cure, but this is my way of helping. Being open about my illness also makes people feel more at ease and willing to learn about Parkinson’s. I’m a big fan of using humor and sharing my story.
What has surprised you most about living with PD?
I have been amazed and touched by the love, support and generosity of so many people. I’m also surprised that there are many more young people with Parkinson’s than I imagined. And I’m surprised that 13 years later I’m still doing reasonably well.
Another surprise is that having my own serious medical condition has made me a more empathetic manager. People who work with me know that I will be very understanding when they have to be out for medical or disability leaves (and as a lawyer I know well that the law protects those leaves). People know that I view that not just as employees, but as human beings who all go through their trials and tribulations and need the support of everyone around them.
What wisdom would you offer someone who is newly diagnosed? Or, what would you want your newly diagnosed self to know about the journey ahead?
A Parkinson’s diagnosis is not a death sentence. In fact, there is a fantastic silver lining from all the wonderful people I’ve met and the sense of a bigger purpose in my life. If I didn’t have Parkinson’s, I never would have completed the World Marathon Challenge or accomplished some of the other bucket list items I’ve tackled. Finally, I would want my newly-diagnosed self to know that I’m not in this alone.
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Bret Parker was diagnosed with Parkinson’s disease 13 years ago, at the age of 38. An attorney, he serves as Executive Director of the New York City Bar Association. He is co-chair of the Patient Council of the Michael J. Fox Foundation for Parkinson’s Research, the creator of a Facebook group for young-onset PD patients, and remains actively involves in numerous Parkinson’s-related efforts. In 2018, he successfully completed the World Marathon Challenge, which entials finishing 7 marathons on 7 continents in 7 days. Bret is married to Katharine, a federal magistrate judge, and they have two sons, Matt and Ben, who are both in college. Follow him on Twitter: @bretparker; Facebook and LinkedIn.