Meet Dr. Phyllis Abel Deal

I first came across Phyllis’s page when I saw a video of her sitting in an airport. Due to a mishap, she was without a wheelchair and had to walk the distance herself. While she admitted it “tuckered her out,” she didn’t spend a second bellyaching. Instead, she turned it into a moment of advocacy, giving wonderful advice to others living with Parkinson’s: plan ahead and don’t be afraid to ask for help.

As I dug deeper into her page, I was struck by her incredible resilience and her sharp, wonderful sense of humor. I knew immediately that I had to share her story. Meet Dr. Phyllis Abel Deal. The name is actually quite perfect — because she is clearly ABLE, and she has certainly learned how to DEAL.

The Parkinson’s Paradox and the Power of the “Funny Bone”

In her own words — by Dr. Phyllis Abel Deal

While I knew very little about Parkinson’s before my diagnosis, I began researching immediately. I soon learned a vital lesson: academic research is helpful, but adding lived experience and a community “in the know” is an invaluable — and necessary — addition to those facts.

The Parkinson’s Paradox

Before I knew what was wrong with me, I went about my life relatively normally. However, the moment I received the diagnosis, I began examining everything, hunting for symptoms I hadn’t yet seen. My daughters suddenly wanted to wrap me in bubble wrap for fear I might fall. In a sense, the diagnosis itself crippled me for a time — more so than the physical symptoms ever had — until I decided to take back my power.

Progression is Just Change

Progression is a scary word, but I prefer to look at it as “change.” While it means advancing symptoms, I look for what can be gained. Mild symptoms are annoying, but when they became intrusive enough for me to admit it, I was given medication. Oh, My-Lanta! It made life so much better.

Managing the “Emotional High Chair”

I still have my moments. I schedule brief visits to my “emotional high chair.” I bang on the tray! I cry and demand a do-over! But then, the timer goes off. Time is up. I get down from the high chair and move back to the grown-up table. 3, 2, 1 — get over it.

Preserving Dignity Through Communication

My husband, Steve, and I talk regularly about where I am mentally and physically. I think about my dignity a lot. I know I will have to release some of it eventually, but I try to make sure I truly need help before I ask for it. Since Steve can’t see inside my brain, I tell him when I’m struggling.

That tiny recognition is enough. I’m also working to retain my identity with my daughters. They see me as a “badass” with a big personality, and I revel in that for a few minutes. Then, I gently remind them of the future: “If Steve gets hit by a bus before I do, will you wipe the drool from my face so I don’t look pitiful?” It’s tongue-in-cheek, but a subtle reminder that for each of us, there is a season.

The Sociologist’s Lens

As a sociologist, I am a bit of a voyeur. I observe my own thoughts as if they belong to a subject. I am approaching Parkinson’s with that same sociological curiosity. Looking back, I had symptoms years before I saw a doctor for the “chicken dance” issue. I now tell myself: “Your fingers and toes moving on their own is not normal. See a doctor, Moron!”

Finding Your Community

For both caregivers and “recipients” of Parkinson’s, my best advice is to find a positive community. I dropped out of several social media groups before finding people on TikTok who have an informed, positive outlook.

I’ve also learned to make friends with tools that help. I’ve realized I can grocery shop longer if I’m pushing a buggy because it stabilizes me. Consequently, I’ll be talking to my doctor about a good walker — the kind with reverse brakes and a seat — so I can enjoy being a tourist again without the fatigue of long lines.

You are not alone. You CAN care, cope, survive, and thrive!