Living my Best Life!
I just finished a video call that I’ve been both anxious and excited about all week. Now that it’s over, my heart rate has slowed down, thankfully. The call was with a representative from the Michael J. Fox Foundation (MJFF), a staffer from Senator Van Hollen’s office who works on health legislation, and two other women who also have Parkinson’s. Our goal was to encourage the senator to increase funding for Parkinson’s research. I had three minutes to tell my story. My voice broke a few times with emotion as I recounted the shock of diagnosis and what it is like to manage symptoms every day. I saw genuine concern and empathy in the staffer’s eyes, which felt like a good sign that my message was getting through. We need more funding and support from Congress.
This was the third such call that I’ve participated in with the MJFF. The first was last year when we spoke with staffers from Congressman Sarbanes’ office encouraging him to co-sponsor the National Plan to End Parkinson’s Act, which passed unanimously in both houses and was signed into law by President Biden on July 2, 2024. The second call took place two weeks ago, also with Sarbanes’ office, but this time to ask for additional funding for research.
It’s been such an honor to participate in these calls and the experience has been incredibly empowering. It feels like I’m part of something bigger and that I’m making a difference—even if it sounds a bit cliché. The MJFF representatives I’ve worked with have been both warm and supportive. I’m eager to find more opportunities like this and feel like I’ve finally discovered my true calling – advocacy work!
Writing these articles for The YOPN Times has had the same effect. It’s been so therapeutic for me to share my story, so thank you for reading this!
I’ve been an editor and publisher my entire career and continue to work full time. I’m not sure when I’ll scale back, but I could see that happening in the next few years.
In the meantime, I stay very active. My husband and I bought a used tandem bicycle that we’ve dubbed “Frankenbike” due to all the mismatched components we’ve installed, and we love taking it out on different trails. I ride in the back, focusing on pedaling and spotting wildlife (still hoping for a bear sighting!). We also love kayaking on local lakes and rivers, where we often see ospreys, bald eagles, and other birds. I attend classes at the gym 3-5 times a week and just participated in my first Rock Steady Boxing class (love it!).
On my “to-do" list is to participate in a Parkinson’s walk next year to raise funds for the cause. Our incredibly talented daughter, an artist, is already designing our team shirts -- squirrels riding a tandem bike with the one in the back (me!) holding a martini in one hand and a shaker in the other. Our team name will be “Shaken, Not Stirred,” and I can’t wait for it!
Lastly, I’ve been more open lately with friends regarding my diagnosis. As many of us have discovered, it’s difficult news to share. There’s an unfortunate stigma with this disease that I don’t quite understand, yet I feel it in my bones. Seeing recent news reports speculating that the president might have Parkinson’s just adds to that feeling. It was made to sound so scandalous, like if you have Parkinson’s then you are useless and inept.
But that attitude can take a hike! I’m not letting Parkinson’s slow me down (well, I am slower but you know what I mean). I’m going to fight it every step of the way with my family and friends by my side. In other words, I’m committed to “Living Well” as our YOPN slogan suggests. I hope you are too, my friends, and I wish you all the very best!
Jenny Newman was diagnosed with YOPD in 2020. She works full-time as a publisher and webinar producer. She and her husband Ernie love to travel and are taking their 11th cruise this fall. Jen stays active with biking, kayaking, yoga, pilates, and spin classes.
