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At my annual physical seven years ago, I showed my internist an itty-bitty twitch in one finger. “I can’t imagine there’s a problem,” he said, smiling, “but let’s get a neurologist’s opinion.” He marched me over to a newly minted doctor — I’ll call her Megan — who asked me to walk, snap my fingers, touch my nose, sketch a clock, collapse into her arms as if we were playing a trust game, and count back from 100 by sevens, which I surely blew. As if she were reporting the weather, Megan then announced: “You have Parkinson’s disease.”
I left her office repeating a word that rhymes with luck but is far from it. When I shared this life-changing news with my husband, he immediately phoned our doctor-cousin to help wrangle an appointment with a specialist in Parkinson’s.
Dr. Big put me through the same tests as she had, although this doctor declared I didn’t have Parkinson’s. He also invited me to join a study developing a test for the disease; one didn’t exist — hence, all the tapping and mind-blowing math. Having never passed up a test since What Color Should Your Prom Dress Be? I signed on and received a brain scan, and I expected his diagnosis would be confirmed.
The scan revealed Parkinson’s disease, an incurable, neurodegenerative disorder I knew well. My mom had it and died at 75 after 20 years of increasingly compromised mobility, hallucinations — pictures of creepy-crawly things for whom she left bowls of water throughout the house — and eventual dementia. About seven years past diagnosis, when Mom showed me a towel she mistook for a puppy and said, “I’m afraid I’m having a nervous breakdown,” I realized she was, at times, mindful of the nightmare she was living through, challenging the belief that people are blissfully unaware of their dementia.
Shortly after that conversation — our last — Mom wandered away from home, terrifying her valiant caretaker, my dad. When incontinence kicked in, with deep regret, he moved her to a memory care facility. Soon, my smart mom no longer recognized him, my siblings or me, though she lived for five more years in a cognitive fog.
Would this be my fate — and my husband’s? For years, I’d privately gloated about my excellent health, taking maybe four sick days in as many decades. That changed at 64 when I was diagnosed with “triple-negative” breast cancer, because apparently regular cancer wasn’t bad enough. Now, I asked God why He (given this karma, I decided God was a man) had to smite me with Parkinson’s, too?
Had I been genetically destined to get PD? Done in by the milk I drank throughout my North Dakota childhood, where local cows might have been jacked up with additives? (Scientists have linked certain chemicals to the disease.) Or just drawn a short straw? According to the Parkinson's Foundation, nearly 90,000 people in the U.S. are diagnosed with PD each year.
The assumption is that people with Parkinson’s shake. Some do, but others stiffen. The disorder presents so many complications that they could fill a two-foot-tall menu at a 24/7 diner. My mom, for a while, used to nearly collide with a wall and freeze until Roomba-style, she righted herself. The speed with which the disease progresses also varies. In PD roulette, a few years after diagnosis, one sufferer may be wordlessly slumped in a wheelchair watching another run a marathon.
Following my scan, my doctor prescribed medication and stressed, as all neurologists do, that exercise is paramount in possibly slowing PD advancement. He suggested I try to forget I had Parkinson's. Impossible.
Nonetheless, you will not find me kicking off a dinner date with an amuse-bouche itemizing my woes. This, because while I appreciate others’ concerns, I don’t want to provoke pity that would make me feel like an invalid, which isn’t how I see myself. I’m also superstitious. After a person is five years into the disorder, my physician explained that the progression rate can be considered stable, and mine, as I write this, is s-l-o-w. Given my magical thinking, discussing my Parkinson’s might jinx it.
This is not to say I’ve dodged Parkinson’s bullets. Drugs suppress my tremors, and my doctor tells me I don’t look PD-ish, but the disorder can affect your insides, and my digestion has gone haywire. Sometimes I’m so bloated I wish I’d saved my maternity clothes and have discovered a whole drugstore aisle for gastric distress.
I experience globus, an icky sensation that feels like a lump in my throat and lasts for about an hour. I’ve become poky; at my fastest speed, three-year-olds whip past me. I’ve fallen out of bed reaching for a lamp that exists only in my dreams, and according to my husband, I’m a nighttime chatterbox, conducting meetings in my sleep as if I am still the editor of McCall’s. (Dream-me is tough, berating staff for being unprepared.)
Although I used to be an ace typist, texting is a challenge. In my exercise classes, I wobble when we work with a free-standing barre, and please don’t suggest that I thread a needle.
I could go on, but compared to my mother, my Parkinson’s is light stuff. Now. I’m not going to tell you I’m not terrified about the future. I worry, constantly, about both me and my husband, whose life I’d hate to see mimic my dad’s heroic care for my mom.
I’m not in denial. I just don’t want to talk about it.
Are any of you facing any health challenges? Let us know in the comments below.
Stocksy
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