When Sam and I first reconnected after meeting in college, I was drawn in by her spark, her humor, her passion, and her ability to light up a room. What I didn’t realize at the time was the incredible strength behind that spark, and how deeply I would come to admire it in the years ahead.
Sam was diagnosed with young onset Parkinson’s disease at 21, right around the time most people are figuring out their future. For Sam, her world shifted almost overnight. She went from being an energetic college student to someone facing a chronic diagnosis typically associated with people decades older. That contrast was hard not just for her, but for everyone who loves her. And as her partner, it’s been both a challenge and a privilege to walk this road beside her.
In the beginning, Sam tried to keep her diagnosis private. I think it was her way of protecting herself and others. Her family even shielded the news during a Thanksgiving gathering shortly after she was diagnosed. She just wasn’t ready to share it, and that’s okay. Everyone processes differently. Over time though, Sam began opening up, slowly at first. I watched her turn her experience into advocacy and connection, and in that, she’s inspired me and so many others.
When we got married in 2018, her father wrote a song for their father-daughter dance. The lyrics talked about his wish to take the diagnosis away and his hopes for her future. There wasn’t a dry eye in the room. That moment stays with me, because as her husband, I’ve had the same wish more times than I can count.
When we moved from Wisconsin to Florida, the responsibility of caregiving shifted more fully to me. Sam’s parents had always played a big role in her care, and stepping into the caregiver role without a support system in a new city came with a lot of emotions: uncertainty, pressure, and honestly, fear. I didn’t want to just help Sam; I wanted her to thrive. That meant doing my own research, asking questions, finding the right doctors, helping advocate for her in appointments, and staying open to different treatment options.
Finding the right neurologist made a world of difference. We finally found a movement disorder specialist who really took the time to understand Sam and helped reset her entire treatment plan, starting fresh after years of trial and error. At one point, Sam was taking immediate release carbidopa/levodopa that caused tough side effects for her. It wasn’t until we got to Florida that things began to feel more stable.
“Sam’s story is unfolding. And every chapter reminds me of how strong, funny, and brilliant she is. Parkinson’s doesn’t define her; it’s just one part of our story. Together, we’re writing the rest.”
In late 2024, her doctor introduced us to a different treatment: CREXONT (carbidopa and levodopa) extended-release capsules. He explained that it could possibly work better for our lifestyle with fewer doses per day. That immediately piqued our interest. We were curious, and cautiously hopeful.
Sam began CREXONT that December, and we’ve been grateful for how it fits into her routine. She’s on the lowest dose, taking it twice a day, morning and night. While she’s noticed an increase in dyskinesia shortly after taking it, her doctor is monitoring and helping manage that. What we both appreciate most is the simplicity of her dosing regimen, less medicine means fewer reminders, fewer interruptions to our day, and more time just living. It might sound small, but for couples managing a chronic illness, those little things can feel huge.
We’ve also been fortunate that access to medication for us hasn’t been an issue. Sam’s enrolled in the Medicare Prescription Payment Plan (MPPP), and that has significantly eased the cost burden for us by capping monthly payments and smoothing them out over the course of the year. Between navigating treatment and all of life’s other expenses, that kind of support truly matters.
Outside of treatment, Sam continues to be a force. She takes weekly dance classes and participates in advocacy efforts with organizations like the Parkinson’s Foundation and The Michael J. Fox Foundation. She even traveled to Capitol Hill to speak about Parkinson’s. That’s who Sam is, she takes every challenge and turns it into something that lifts others up.
“As her husband and care partner, I’ve learned so much. I’ve learned how important it is to keep looking for answers, to keep asking questions, to advocate not just for Sam, but for our relationship, our quality of life, and our future.”
To anyone else navigating life as a care partner, my advice is this: don’t settle. If something isn’t working, whether it’s a doctor, a medication, or a routine, keep looking. Keep advocating. The right support system can change everything. And when you find a treatment plan that fits, like we did with CREXONT, it can bring not just emotional relief, but peace of mind.
Sam and Derek’s experience with CREXONT is their own and may not reflect the experience of every patient. For some people, CREXONT may cause falling asleep during daily activities. Side effects may include nausea and anxiety. Individual results will vary. Always speak with your doctor to determine if CREXONT may be right for you. Only a healthcare provider can assess your condition and guide you to the appropriate treatment options.
