My PD Story

One Year In

I’ve been keeping an eye on May 6 on my calendar for months as it approached, wondering how it might feel to know I’ve had one full trip around the sun with this diagnosis called Parkinson’s. (And probably a few more trips around the sun chasing the diagnosis.)

One year. 

One year since I saw my movement disorders specialist for the first time and received a clinical diagnosis in her office, delivered with as much kindness and empathy as I could have hoped for.

One year since I sat in my car in the parking lot, staring down at the tremor in my right hand. 

One year since I called my husband, Rob, on the drive back to work and said “Well. Yes. It actually is Parkinson’s.” And processing our shock together. 

One year since I called my beloved mom and sister, dreading delivering the news because the three of us are so deeply sensitive and connected with one another that causing them any heartache was even more painful than receiving the diagnosis itself. 

In the weeks after my diagnosis, I cruised along in a fairly neutral state of mind, without fully processing. I was getting through our daughter’s high school graduation, welcoming our son home for the summer after his junior year of college, celebrating my 52nd birthday, and wrapping up a job I’d given my all to for 15 years.

I was just beginning to learn how to filter Parkinson’s resources to get the details I needed without getting too much information that might shut me down. As with anything these days, once my search engine results started influencing my social media algorithm, I began getting targeted by all sorts of information — some useful and some not. 

The ones that hit the hardest were about supporting Parkinson’s caregivers. I’m happy those resources exist, but they just heightened my knowledge of and stress about becoming a burden on Rob and the kids. As a 100% Enneagram Type 2 (“The Helper” type, driven by a need to feel loved and useful), I like to be a caregiver and to be of service, and I’m not very comfortable when those roles are reversed.

Two weeks after my diagnosis, I went to my first physical therapy appointment, which led to a very necessary emotional breakdown. The appointment was fine, but the act of the assessment and then staring down the schedule of upcoming follow-ups, combined with a particularly dramatic caregiver post that appeared on my Facebook that morning, finally sent me reeling. 

I left physical therapy and called Rob sobbing, just as he was joining an important work meeting. Luckily for me, I work with two very dear friends, so when I got back to the office, they held space for me. Then there came a knock at our office door, and there stood Rob, his arms outstretched, offering a hug and an iced tea (my love language). Note to self and others: don’t call your spouse sobbing, then leave your phone on silent for the next hour, unless you want them to leave work to check on you. 

I can say with certainty that learning to receive care and make peace with whatever the future holds in that regard has been my biggest challenge of the past year. Well, along with damn foot dystonia. Those are both still a work in progress.

One year in, here are some of the many things I’ve learned:

The Parkinson’s community is incredible. There is so much empathy, energy, kindness and hope. There are amazing organizations, both locally and nationally, doing significant work in helping people live well with this disease, as well as working toward a cure.

Here in Austin, I feel so lucky to have connected with the Capital Area Parkinson’s Society (CAPS), as well as Power for Parkinson’s. I loved supporting the CAPS annual fundraiser in February. I am excited to now be facilitating a monthly CAPS Young Onset Parkinson’s dinner meet-up and working as their Volunteer Coordinator. I attend a weekly Power for Parkinson’s class, and I leave with a huge smile. What I thought might be overwhelming or demoralizing is instead invigorating and inspiring. 

Another bright spot is my new friend, Linda, who I met in line at a CAPS Parkinson’s seminar and who is the one who got me to attend the Power for Parkinson’s classes. We were both diagnosed in May 2025, and even though there are a few decades between us in age, it has been a true delight to make a new friend who is on this journey with me. 

I’ve completed the Parkinson’s Foundation Ambassador training, and I look forward to tabling and speaking at local events to share information about Parkinson’s and the many resources that are available to help you live well with this disease. 

Central Texas folks: let me know if you want me to speak to your business, school or any kind of group about Parkinson’s or table at your community event!

One year in, I’m still learning. Some days are harder than others, but that was also true before my diagnosis. Everybody has something to contend with, and Parkinson’s is mine. I can accept that while also doing everything I can to minimize its impact on my life and my joy.

Find ways to connect with your Parkinson’s community today. Explore resources in your area and the many ways you can help.