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A man looks at himself in the mirror with honesty.

Facing the Reality of the Parkinson’s Diagnosis

It took about two years for my physicians to sort through the array of maladies I had before ultimately reaching the decision it was Parkinson’s. In hindsight, it was a distinct diagnosis. But it reminded me of something Arthur Ashe said, “You’ve got to get to the stage in life where going for it is more important than winning or losing.” Leaving my neurologist’s office with my first prescription left me numb, not stunned. And it left me sad not glad. The name of Parkinson’s was now a part of my existence; as this diagnosis becomes attached to about seven people per hour every day of the year in the USA.

Living with Parkinson’s becomes the everyday reality

Within an hour of taking the first dose of ropinirole (dopamine agonist), I realized that my new life with Parkinson’s had started. And there was a glimmer of goodness that day when I felt the dopamine agonist kick-in, and it melted away my stiffness. Seven years later, it’s a combination of carbidopa/levodopa and dopamine agonist, but the same feeling exists each day when I take my medication. Giving me a gentle reminder, yes, you really do have Parkinson’s. Reading these words reaffirmed that I had begun a new life, “This diagnosis is a reminder that this is the life you’ve got. And you’re not getting another one. Whatever has happened, you have to take this growth and treasure and protect it.” – Elizabeth Edwards

Crossing the bridge to live the new life with Parkinson’s was difficult

However, I have no real explanation of why I had such a hard time accepting the diagnosis, was it stubbornness, denial, embarrassment, stupidity, what was it? For some months of the first year with Parkinson’s, well, I spent it pretending that nothing was wrong. I learned to eat with my left hand, knowing that my stiffness and affected side was my right. This was based on some silly rationale that by learning to use my left side would better balance me over the long haul — sheer stupidity. Ultimately, I realized that hiding behind an invisible wall prevented me from moving forward with the knowledge of my Parkinson’s.

Furthermore, it didn’t keep my Parkinson’s from being recognized by others. A neurologist-colleague told me, “I watched you for a couple of years convinced you had Parkinson’s. HIPAA Regulations prevented me from talking to you about it. I just hoped you were receiving the best possible care.” Several months into my diagnosis, I sought out this neurologist’s advice. I had become convinced that pretending not to have Parkinson’s was becoming a nuisance. The words of David Ignatow started to make sense, “The burden of living one’s own life is experiencing sensations that no one else can share.”

Choosing life with Parkinson’s

Not initially facing the reality of Parkinson’s was just a mistake on my part. I had told my immediate family (two older sisters), and I had informed the members of my laboratory group. However, sharing the diagnosis with close friends was just not done. Somewhere in the depths of my mind, I was also a little concerned with the notion of losing my job.

I gathered my wits and thought deeply about what mattered more, living as the real person with Parkinson’s or living shielded behind a facade? I chose to live my own life in the presence of Parkinson’s.

Everything got better, much better, and it happened immediately. Regaining the support of others felt like the early springtime sun and rains providing nourishment to the emerging flowers. Finally, I realized that your real friends and colleagues would not abandon you, even in the presence of Parkinson’s.

“Live your life being positive, keep your life in the present moment, and be persistent and persuasive with your life in the world of Parkinson’s.” – Frank C. Church

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • JeffD
    2 weeks ago

    Always enjoy your writs, Frank. I’ll tell my story soon. And thanks for inspiring me. Mine is rather pedestrian compared to the others who have so selflessly disclosed. But I’ll try.

  • Zsuzsa
    2 weeks ago

    I welcomed the diagnosis, because I knew something was wrong, why I couldn’t walk fast anymore & fell down a lot. At least IT had a name, and a Rx! Soon after starting Sinemet, I felt almost normal again! It’s been 4yrs and I had breast cancer last year, but I’ve been able to dance, paddle, walk, etc. I take each day as it comes, but I sure would like to get more sleep!

  • JeffD
    2 weeks ago

    I have responded well to meds too Zsuzsa. And I welcomed the diagnosis too since it ran in my family. My drug response was so good that my fellow Parkies were amazed. In fact some need to remind me that I am in honeymoon stage. I do know that. My father and his father had it so I know what is coming. But I got it earlier than they (age 49, just a couple years ago) and my hope is the progress will be slower. But who knows! I try to sleep and exercise as much as possible as to stay positive like you. Doesn’t always work but I keep trying. Thanks for sharing.

  • Posy
    4 weeks ago

    I completely empathise with your initial denial and embarrassment! I, too, feel better after “coming out” about my PD!! I am also slightly kinder to myself- more tolerant of my shortcomings.
    Thanks for sharing this.

  • Frank Church moderator author
    4 weeks ago

    Thanks Posy, I thought this was an important topic to write about. Although it’s very personal, I really felt there’s got to be others who feel this way initially. And bring kind to yourself is the answer. Thanks for your note and best wishes, Frank

  • Dan Glass moderator
    4 weeks ago

    Great article – you always have such great quotes.

    I remember my first Azilect pill thinking, “Here’s the first pill of a medicine I’ll be taking for something I’ll have the rest of my life.”

  • Frank Church moderator author
    4 weeks ago

    Thanks Dan, I’m especially happy with the quotes in this blog, they balance the narrative and reinforce the story really well…they just fit. Every few hours I wait for my ‘meds’ to kick-in, and it’s a feeling I’ll never get over, but it’s now part of the fabric of my life. Best wishes, Frank

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