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 might 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 girl 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 found music to be an escape from Parkinson’s, which 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 our 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 child, 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.

As I am still covering “the good” of my current health, 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. Having used this pump for one year now, I plan to devote a future post to the pros and cons. 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. And, ’‘tis

Springtime, which means the neighborhood mailboxes must be sniff-inspected daily. With a

piercing stare plastered on his face, he follows me around the house each morning until I leash

him up and head outside. 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.

I am now going to dive into ’the Bad’ aspects of my Parkinson’s: the motor symptoms that everyone sees. These are the physical hurdles Parkinson’s throws my way, affecting everything from how I move to how I stand. In short, motor symptoms are movement-related issues and involve the body structures that control movement and posture. I am referring to the visible symptoms: tremors, stiffness, balance issues, freezing gait, and the facial ‘Parkinson’s mask’. These are part of the checklist my neurologist runs through every visit—such as quickly moving my hand from a fist to open with extended fingers. Sadly, I’ve done these neuro exams so often that I can now start the tasks before my doctor even makes the request.

I have also noticed a gradual worsening in my ability to speak clearly, known as dysarthria. Progressive muscle weakness in my mouth, coupled with severe muscle stiffness in my face, lips, tongue, and throat, leaves me with a quiet, monotone voice. My family knows that if I do not answer my phone when they call, it is often because I am too stiff to enunciate my words and speak loudly enough to be heard.

In the earlier years of my illness, I struggled with tardive dyskinesia -  a side effect of long-term use of carbidopa-levodopa (the only PD medication and treatment available for many decades). Dyskinesias are involuntary or erratic muscle movements that I cannot control. For example, I could be sitting in a chair, having a lovely conversation with someone while the muscles in my head, face, neck, arms, torso, and legs twitch, sway, or rock back and forth. Not only are dyskinesias wildly distracting, they are also exhausting. While my brain is enjoying the conversation, my body feels like I am competing in a triathlon, but with none of the muscle groups working in unison. My legs are running, while my arms are doing 2 - 3 different swim strokes, and my butt and torso are trying to stay in place in the chair (or the bike seat, if you will). All the while, the other person is politely smiling, certain that heavy drinking is the only logical explanation for what they are witnessing. Bottom line: a person with PD may often need rest - breaks and naps.

My dyskinesias vastly improved when I had a deep brain stimulator implanted into both sides of

my brain 7 years ago. But all the movement in my torso over the years has had lasting effects

on my back and spine. The vertebrae in my neck became so degenerated from dyskinesias

that I had my entire neck surgically fused with pins, down to my upper ribs, three

years ago. I have another lower-back fusion surgery scheduled for this spring. The surgeries

usually involve several weeks of painful recovery, followed by several months of physical therapy.