My PD Story

I was diagnosed with Parkinson’s disease (PD) in March 2023, just a couple weeks before my 43rd birthday. I went to the appointment alone after a long drive. I did a series of tests and was told matter-of-factly that I had Parkinson’s. 

I didn’t really react... no big emotional response. I was just like “Okay… what do I need to do?” I left with information, medication options and a plan for more testing.

That’s just how I handle big things. I’ve had a lot of those moments in life, and I go into “figure it out” mode. I told my son and my parents right away, then my sister, my closest friends and my supervisor. I also posted on social media about it pretty quickly because I didn’t want people to make assumptions about why I’m shaking.

After my diagnosis I discovered the Parkinson’s Foundation and the People with Parkinson’s Advisory Council while researching online. When I saw the announcement for the council I immediately applied — I was eager to learn more about Parkinson’s and contribute in a meaningful way to a community that understands the journey.

Being a member of the People with Parkinson’s Advisory Council is incredibly rewarding. It feels empowering to have a voice and to be part of shaping resources and support for others living with Parkinson’s. 

At times, I wish I could contribute even more. Balancing a demanding full-time leadership role, family responsibilities and living in a rural community can be challenging, but I remain deeply committed to the work and the impact the council makes.

After diagnosis, my emotions took a while to catch up. It was almost a year later when I first felt real frustration. During an OT (occupational therapy) appointment I realized how much my movement had changed.

Another year passes and the grief really showed up. 

One quiet morning, I was lying in bed next to my partner and I could feel my left arm tremoring. I put my hand on it, gently held it for a moment, and said, “I’m so sorry you’re broken.” It sounds kind of ridiculous, but it felt real. I needed to apologize to my own body. 

That moment stuck with me all day, I was constantly on the verge of tears. I ended up finally crying that night when he asked me what was wrong. I told him. I couldn’t hold it in anymore. I avoided sharing my thoughts and feelings about what's going on because I don't want anyone to worry... Not my parents, my son, my love... No one.

Parkinson’s doesn’t feel inspiring to me. It feels like loss, frustration, anger and being tired all the time. “Hope” for me isn’t about being positive. It’s just getting up and dealing with it anyway.

And today… today was one of those days.

Recently I was at a work event, and the expo center is about a half mile from my hotel. I walked back and forth a few times. At first, I was kind of proud of myself. But by the end of the night, I was hurting and struggling just to get back. I had to stop multiple times.

I can’t fully explain how much that sucks.

Before all of this, I walked a few miles every day without thinking about it. Now a half mile felt like too much. 

I’m frustrated with my body. Today, I hate Parkinson’s.

I’ve been trying to act unbothered... trying to be strong, to accept it, to not let it define me. But the truth is, some days I’m not okay. Some days I’m scared, sad, angry, insecure, in pain, tired, lonely… and at times, hopeless.

Through the lows and dim highs, the Parkinson’s Foundation remains an invaluable resource for me. I regularly turn to Parkinson.org as my first source when I have questions or need support. 

Resources that have been especially helpful include the Substantial Matters podcast, virtual PD Health @ Home educational programs like Mindfulness Mondays, the Women with Parkinson’s Community Network and the Hospital Safety Guide. These tools have provided practical guidance and a sense of connection, which is so important when navigating life with Parkinson’s.

Many days it feels like too much work to try to slow progression through movement and exercise when I already have so little time and energy. And when I do try, my body doesn’t always cooperate. Some days, it feels easier to just give up.

But this is the part people don’t always see. This is Parkinson’s too.

I can hate it today… and still show up again tomorrow. I’m not giving up just yet.

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