My PD Story

Parkinson’s entered our lives with the tiniest little movement on one little finger, barely even noticeable by anyone.

My husband and I talked, and we decided to go to the neurologist to find out what was going on. The neurologist asked a few questions, did a few “standard” physical tests, and diagnosed my husband with Essential Tremor. Just like that, my husband had a new diagnosis, but not much information about it, and was prescribed medication to “help with the tremors” — we felt as if we had been dismissed.

The neurologist wrote an order to go see an Occupational Therapist. When my husband arrived, it was an open room with many other people receiving therapy at the same time from many different therapists. There was no privacy and no recognition that this may be a difficult diagnosis to share in a public space.

The therapist was unfamiliar with Essential Tremor and had to look it up online, searching for ideas on exercises that can help. That was the beginning and end of treatment for a few years.

The tremors became worse, traveling through his hand and now into his arm, along with other symptoms over time. The experience we had with our first neurologist was not optimal and a little traumatic; my husband was hesitant to go back to the doctor.

It took a while to find a new doctor and get an appointment, since specialists are very limited in our state. We were finally able to see a new doctor, but it was the year the world stopped — COVID, 2020 — and not the easiest time to see a doctor in-person, let alone a specialist. We had our initial visit by video and received the official diagnosis, “You have Parkinson’s.” Our life changed through a computer screen. It was devastating in every sense of the word.

Now, we walk through this journey together — the good days and the not-so-good days, the medication changes, the sleepless nights, the night terrors and everything in between.

My husband is the one that was diagnosed, but I always use the word “we” when talking about Parkinson’s because, although he is the one with the disease, WE are the ones living with it daily.

It affects both of us, and it affects our whole family. This disease isn’t just about symptoms; it is about the family it touches, the tears, the celebrations, the everyday life, the doctor appointments, the timers for medications throughout the day, and so much more — it affects everyone around it. WE have learned to celebrate something every day, no matter how big or small, to say, “I love you,” and to live for the moment.

Although you may feel like you are on a deserted island when you or your loved one are given the diagnosis of Parkinson’s, I hope you know that you are not alone facing this disease. There are many of us living with this diagnosis.

Get involved, do your research with reputable resources, and find “your people.” Day by day, we are discovering all these things through the Parkinson’s Foundation.

The Parkinson’s Foundation is here for care partners. Explore resources dedicated to care partners today.