It started with a tremor.
For the past year, I’ve had a tremor that Craig would notice whenever I held up my fork or the remote control or my phone to play Connections. We chalked it up to twitchiness or nerves but then the tremor persisted and became really noticeable. A friend saw my hand shaking while talking to me on the couch and said, “Wow, you must be really nervous for your book tour.”
So I went to my primary doctor in Chelsea and he said you most likely have what’s called “an essential tremor,” but just to be safe, he referred me to a neurologist at Mount Sinai. This was in February. I couldn’t get an appointment until May; specifically, the week of my book launch.
On the Friday after my events at the Brooklyn Heights Library with Joanna Goddard and at Archestratus with Deb Perelman, I journeyed up to Mount Sinai with a kick in my step. That night we were going to Torrisi with my parents to celebrate all kinds of stuff — the book debut, my dad’s birthday, my parents’ anniversary — and I saw this neurology visit as just a quick little hiccup in my day.
When I went into the examination room, there was an intern on scholarship from Thailand who was moving back to Bangkok in a few weeks and we were chatting about all of the things that he needed to do in New York before going back. I suggested a few Broadway shows, Katz’s Deli, Coney Island. There was an RN in the room too and as we were talking they were having me do all kinds of tests: touching my nose to my face, walking across the room, drawing spirals in a notebook.
When they finished, they paged the doctor to come in and while we were waiting I casually asked, “So does it seem like an essential tremor to you guys?”
“Actually,” said the intern. “You’re showing all of the signs of Parkinson’s.”
There are certain moments in your life where you feel the floor drop out from underneath you and you’re suddenly hurled into a completely different plane of existence. That’s what happened to me in that moment.
When the neurologist came in, she saw the results of the intern’s tests and then repeated many of them herself, confirming his suspicions. “When we think of an essential tremor, we think of someone like Katharine Hepburn… her whole body shakes and even her voice has a warble to it.” I wanted to reply, “The loons, Henry, the loons!”
Instead, I listened as she explained that with Parkinson’s disease (or P.D.) there are two additional components to a tremor: rigidity (or stiffness) and issues with mobility. She pointed out that when she watched me walk down the hallway, my right arm remained completely still while my left arm swung. She’d also lifted both arms and felt that my right arm was heavier. As for mobility, she’d had me rapidly move my thumb up and down on my right hand and then my left hand and I struggled to do it as quickly on my right side. Also my handwriting was getting progressively smaller and smaller the more that I wrote a sentence.
“Do you have any questions?” she asked.
Did I have any questions? I barely knew where to begin.
“How quickly does it progress?” “Will I still be able to cook? To write? To play the piano?” “Am I going to become like Michael J. Fox?”
She took the questions one at a time: “The disease is different for everyone, so I can’t tell you how quickly it’ll progress.” “We’ll do everything we can with medication to help you maintain your lifestyle, and that includes cooking, writing, and playing the piano.” “No, you won’t necessarily become Michael J. Fox, he’s had his own series of complications.”
When I left the hospital, I was in a daze. I called Craig and he had such a jovial tone when he answered the phone that I felt like I was snipping the wings off a butterfly when I told him the news. He was shocked and incredulous and then bereaved. I called my parents right after and they too were in total disbelief.
And all this on the precipice of leaving for my book tour.
While I was bopping from L.A. to S.F. to Portland to Seattle to East Troy, I was carrying a lot more than just my luggage with me. I was grateful for the distraction: it felt like the more I flitted about, the less I had to sit with the hard truth of my diagnosis.
Everything culminated last week when I went to Mount Sinai for an MRI and a DAT Scan (a Dopamine Transmitter Scan, to help confirm Parkinson’s). For the DAT Scan, they injected dye into my blood that attached itself to dopamine so they could see it light up in my brain (Parkinson’s is the progressive loss of dopamine).
We Zoomed with the doctor yesterday, and as she explained, that image in the middle on the right shows the Dopamine receptors in my brain. The one on the left looks like a comma or an eye with a teardrop; the one on the right is missing its teardrop. That’s actually the left side of my brain and it’s missing those Dopamine receptors, hence the rigidity and tremor on my right side.
Which is all to say — in case you haven’t gleaned it from everything that came before this — I’ve now been officially diagnosed with Parkinson’s Disease.
As you might guess, these past few weeks have been a chaotic emotional roller coaster, with many many highs and many many lows. Only now have I had a chance to sit with the news and grieve and ponder my future.
There was some talk amongst my closest friends and family about whether I should write about this on my blog. Frankly, I couldn’t fathom a world where I didn’t write about this on my blog. After all, I’ve been sharing facets of my personal life on here, my newsletter, my podcast, and multiple other forms of communication for over twenty years. How can I tell you what I’m cooking for dinner and eating for lunch without explaining any of the context? Especially since one of the major things that I’ll need to do to slow the progression of the disease is exercise.
That’s right. The worst news of all! I hate exercise. But apparently, a Yale study showed that if you can raise your heart rate to 80 – 85% of your maximum heart rate for 30 minutes a day, it’s been proven to slow and possibly even reverse the progression of the disease. I suppose that Peloton might finally come in handy.
I’d also probably do well to take up Yoga, Pilates, and some kind of strength training. And diet will play into all of this: not just because lots of fruits and vegetables are highly recommended (constipation is an unfortunate side effect of PD) but, also, the healthier I eat, the more likely I will be to exercise. That’s something I’ve learned over the past few decades as someone who is very, very unlikely to exercise.
The other reason I want to be open about all of this is that I don’t like the idea of there being any stigma attached to having Parkinson’s disease or, for that matter, any disease. It’s just something I’ll be dealing with the same way I’ll be dealing with taxes, dog poop, and the current Supreme Court. If it gives others who’ve been diagnosed some kind of relief to hear about my situation and also makes them feel less alone, it makes me glad to write about it. It makes me feel less alone too.
On that note, I have to say how wonderful Craig has been through all of this. I’m so lucky to have him and also so lucky to have Winston. He wasn’t advertised to us as an emotional support dog, but he’s taken on the challenge and out-performed any potential competition.
Sorry for the bummer of a post on a Monday morning but now that I’ve opened up, let’s not dwell too much on the sad stuff. There are many more chickens to roast, cookies to bake, noodles to slurp. I even have the name of my next cookbook picked out: Shake and Bake.
Too soon?
Hey, if we don’t laugh about it, we’ll never stop crying.
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