medical diagnosis

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Almost two years and 10 doctors later, “we”— and that’s the “royal we” — finally have an actual diagnosis for my sudden, mystifying physical decline.

And guess who came up with it? Yep. It was I (as my grammarian mother would insist I say, since, as she always liked to remind us, “the verb to be does not a direct object take.”) It’s a crazy story involving some significant serendipity. Here it is if you’re up for it.

If you’ve been hanging out with me for a while, you know I’ve gone downhill pretty quickly, from an active, empowered, perhaps too proudly ageless-seeming woman to an aged shell of my former self. So many losses following the big one of my beloved Trond in 2020.

I lost some 40 pounds, my balance, my ability to walk safely without a cane and to drive. I even lost the ability to write and speak clearly. My mind (some say) is sharp as a tack, my body not so much. It’s been an ongoing nightmare I can’t shake loose.

Not least, I became so devoid of energy, I had to hire part-time help to cook, drive and take care of me. And no one could figure out what the hell was going on—until two weeks ago.

Spending as much time home alone as I do, I desperately wanted to watch something on TV other than MSNBC, where I admittedly spend way too many hours wallowing in news about the dire state of our country. I suppose misery loves company, but still.

Trusting her entertainment tastes, I asked my daughter Nora for ideas, and she suggested an Apple TV show called Shrinking. When I finally got to it, I loved it, adopting the endearing characters as my new best friends. One may have saved my life. (Okay, that’s hyperbole; it’s more like he may have given me a bit of my life back.)

The three main characters in the show are therapists, hence the title Shrinking. The elder in the group is Paul, played by Harrison Ford. In episode number 7, having finally told his daughter that he has a serious health condition, she flies to California from the East Coast to see him and be sure he gets the best possible care.

They were sitting in his neurologist’s office discussing his case when I think it started to dawn on me. But the “aha” moment happens a little later.

After an altercation back at his house, Paul’s daughter storms out to head for the airport, and a disconsolate Paul attempts to follow her to the door to call her back. The camera pans slowly to his feet, which suddenly turn in toward each other, stopping him in his tracks.

He can’t move!

Oh my God, I thought to myself. That has happened to me! Is it possible that, like Paul, I have Parkinson’s Disease? Shit! You’d think I would have started to Google immediately. But since it was time to go to bed (I could barely make it till 7 o’clock most nights), I decided to wait till morning and try to get a good night’s sleep.

Incredibly, I did. But I got on it as soon as I woke up and was blown away by the list of Parkinson’s symptoms. I knew instantly that I am in the zone.

How had no one seen it! One of my dear doctors keeps apologizing for having missed it but, hey, it came on pretty darned fast, seemingly out of nowhere. And he hadn’t seen me in the flesh for a while. Even doctors who saw me recently hadn’t gotten it.

The symptoms are pretty specific and some are downright strange. Two that resonated right away are particularly so — sudden difficulty articulating words, not because one can’t remember them but because it’s hard to move the jaw and mouth. And yes, I’d been thinking I sounded drunk.

But the weirdest symptom of all is the itsy-bitsy handwriting. I, who used to write big, bold words, recently found I could barely make scribbles on a page (or check, or whatever) large enough to read them myself. My hand just wouldn’t do it. That was the clincher.

My primary care doctor fit me in that day and referred me to a neurologist. I’m getting tests, presumably to see if I have Parkinson’s Disease itself, which my neurologist insists I don’t but can’t explain quite why. More mystery.

In any event, I seem to have something called “Parkinsonism.” It’s one of those words the medical community conjures up when enough people have a cluster of similar symptoms that it requires a name, but nobody has figured out exactly what “it” is or what causes it, let alone how to treat it. Fibromyalgia is another good example.

The good news is there’s a drug that often helps with the movement disorders that have been plaguing me. It’s called Sinemet, I’m taking it, and I am walking and moving about more easily, if not exactly gracefully, than I have in many moons. Yes!

So far there’s no sign of dementia. More on that another time since I’ve learned it usually develops 10 years after the start of movement disorders. But hey, I should live so long and, as a doctor friend reminded me yesterday, there are things we can do to stave it off. Something to look forward to. Not.

My challenge for now is to remain grateful for what I still have and to stay curious about what is to come. But more than anything, may I please remember this: I am—and we all are— so much more than this ephemeral temple of a body and, so long as we inhabit it, we are still capable of loving and being loved. And, as you and I well know, that is all that matters in the end. I send you love and thanks for reading.

About the Author: Suzanne Grenager

A seasoned writer and mentor with a gift for helping people see and be their most authentic, empowered Self.

8 Comments

  1. Maurie April 24, 2023 at 1:28 pm - Reply

    Oh my, Suzanne, what a journey! I appreciate the story of how you learned of your diagnosis! Your writing continues to be engaging, inspiring and a clear tone of you!
    My hope is this will open doors toward your vitality.
    Love, Maurie

    • Suzanne April 24, 2023 at 7:12 pm - Reply

      Thanks for your encouraging words about my writing. And I especially appreciate your wishes for my returned vitality. May it be so!

  2. Peje Ruegg April 24, 2023 at 1:47 pm - Reply

    As always I send you love. Thank you for sharing more…..I hope to hear a definite conclusion soon. Peje

    • Suzanne April 24, 2023 at 7:10 pm - Reply

      Thank you for your good wishes and love!

  3. Marian Methner April 24, 2023 at 2:40 pm - Reply

    S. I’ll write a quick repeat of what I said in a message. My mom was so relieved to learn that she had Parkinson’s after suffering from a cascade of symptoms. Researchers have learned so much since she died almost 15 years ago at 86. Hopefully this learning will serve you! Holding you in love. M

    • Suzanne April 24, 2023 at 7:09 pm - Reply

      I am sorry about your mom and I too have heard that there’s a lot of research that may help me to beat this rap And perhaps avoid the dementia that often engaged ensues. Thanks for reading my post and commenting.

  4. Martha Metz April 24, 2023 at 4:35 pm - Reply

    Dear Suzanne, I am sharing that my father was diagnosed with
    Parkinson “like” symptoms, a sub-category because most of the
    traditional markers in blood and nerve related are a bit different.
    He is on the same med you mentioned and memory patches.
    Timing and doses have been adjusted for maximum benefit
    of which other doctors were not understanding.
    The research he is involved with is through Penn State Hershey with
    Dr. Huang; he and my mother speak very highly of her.

    • Suzanne April 24, 2023 at 7:05 pm - Reply

      I’m sorry your father And I shared this diagnosis but glad he is getting great care, as I hope to do. Thank you for weighing in.

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