Parkinson's at 28 Years: The good, the bad, and the ugly; Part 1

It’s been five years since my last post—and as of January 2026, I’ve officially been grousing about Parkinson’s for 28 years. Yes, Parkinson’s and I are still in a relationship, and, if I were on a dating site, I’d have to check the “It’s Complicated” box as the best descriptor of our current status. We’re definitely together, but not exactly on speaking terms. I have found this update (and the fact that it will require 3 - 4 parts) quite difficult to pen for you.

The past five years have had some highlights worth mentioning. We have successfully launched all five of our daughters into adulthood. Each of the five girls has her own car, health insurance, and a place to live, and, much to my husband’s delight, each has a Roth IRA. We are bursting with pride!

With adult daughters come weddings. I have been present for the nuptials, thankful that my illness never stole the spotlight. Adrenaline gets me through big events such as these, but once that surge wears off, my body needs several days to recover. At our house, this is known as “the crash,” which is remedied by an extended nap and aggressive laziness.

With married daughters, it’s fair to ask if I have any grandchildren. Well, no, not yet. But... I do have 11 grandcats. I won’t bore you with the pictures.

My husband of 35 years, Terry, steadfastly remains by my side. Though Parkinson’s is my illness in the physical sense, this disease hijacked our marriage and the life we envisioned for ourselves. For every joy PD manages to steal from us, Terry remains remarkably adaptable, always seeking out new activities to maintain our bond. The next paragraph is a perfect example.

Due to my back issues, we traded in our dancing shoes for instruments and joined a rock band. Seems like a logical progression, right? He plays electric bass and guitar, while I play keyboard. I have determined that music is my escape from Parkinson’s and, at times, works better than some of my medications. I can get so caught up in the music that, for a little while, I forget that I am sick. It was a surreal 'full circle' moment watching my daughters act as our official videographers, cheering us on just like proud parents. And, despite my disdain for the 10 years of piano lessons I endured as a kid, from those lessons, I have discovered I can write music as well - more to come on that at a later date.

As a quick reminder, I was diagnosed with Young-Onset Parkinson’s Disease (YOPD) at the age of 29. Several different gene mutations can cause YOPD, and Parkinson’s has about as many varying symptoms as you can dream up. While I face other challenges, I am immensely grateful to be spared the hallmark tremors that afflict so many with this illness.

While I am still covering “the good” of where my health is at currently, I must give kudos to modern medicine and the AbVie Vyvalev Dopamine Wearable Pump. This device has been an absolute game-changer for the better in terms of my quality of life. I have been using this pump for one year now. I plan to devote a future post to the pros and cons of this device. I am neither a doctor nor a drug rep for the company, but I hope to share my opinions soon.

Last, but not least, is my little dog, Tucker. He is 10 now, but still going strong. Yes, ‘tis Springtime, which means the neighborhood mailboxes must be sniff-inspected daily. Wi

th a piercing stare plastered on his face, he follows me around the house each morning until I leash him up and we are out the door. Some days I can only make it a half mile, but when we return home, he devotes the rest of his day to me. On good days, he is in the kitchen with me while I cook. On bad days, he is a quiet companion in the room. On my darkest days, he stays right there on the floor with me, anchoring me through the emotional storms and torrents of tears.