Living fully with Parkinson’s: Two years in

It’s been nearly two years since I was formerly diagnosed with Parkinson’s Disease. At the time, it was a diagnosis that wasn’t unexpected, and I was relieved it wasn’t something more immediately devastating, like a brain tumor, or a more aggressive neurodegenerative disease like ALS. The best news? I’m still here, I’m thriving, and while my symptoms can be a nuisance, they’re not a disability. If you didn’t know exactly what to look for, you probably wouldn’t even guess that I have Parkinson’s. That’s my goal: to keep it that way.

Parkinson’s is caused by the loss of dopamine receptors in the brain and involves both motor and non-motor symptoms. On the motor side, this can include issues like balance problems, muscle stiffness and rigidity, involuntary movements (dyskinesia), and what’s known as “freezing.” I could go on, but I’ll spare you the list. Non-motor symptoms often affect the autonomic system and cognitive functions. This might include difficulty speaking or swallowing, slow digestion, insomnia, and anxiety. It’s crazy how many aspects of life it touches. For example, did you know Parkinson’s puts me at a higher risk for melanoma? Go figure. Living in Arizona already comes with its own sun-related risks, but that’s just one more challenge.

I honestly can’t imagine navigating this journey without my incredible support team. I have an amazing neurologist, occupational therapist, speech therapist, nutritionist, and physical therapist. My physical therapist, Kyle, and I have been working together for almost two years. He’s been a great balance of support and challenge, pushing me right to my limits. And I’m not talking about easy exercises—squats, deadlifts, sprints with him holding me back using an exercise band, and dual-tasking activities that make my mind and body work together, even when I’d rather avoid it. Exercise is critical as we age, and for people with Parkinson’s, it’s even more essential. Nothing else out there can slow the progression and keep the symptoms manageable than intensive exercise.

So far, I’ve shown little to no decline in the areas they track, and I’m determined to keep it that way. The journey can feel lonely at times, especially after losing my main cheerleader and care partner earlier this year. But I keep myself engaged and active—whether it’s through writing this blog, volunteering with the Parkinson’s Foundation, or connecting with friends who keep me motivated. And of course, I’m committed to being as involved as possible in the life of that little gem of a grandbaby for as long as I can.

Today, I’m grateful for the ways this disease has forced me to dig deep, push my limits, and make the most out of each day. I may have Parkinson’s, but it doesn’t have me.

Love to all