The Eyes Have It: Parkinson's and Vision
For the vast majority of COVID lockup, I've been reading ferociously. Along with the piles of books I read, I seem to inhale a lot of Internet articles. One of these, "On Traveling When Your Dad Has Parkinson's" (by our own Mary Beth Skylis) really affected me.
Her writing tells the story of growing up with a "Jack" (London/Kerouac) for a father and how he showed her the values of wanderlust and home while looking out for her well-being. Now she finds herself looking out for him due to his Parkinson's. Thinking about this life transition, I began to wonder about myself and my ability to be "on the road."
Most importantly, I wondered if it would be my reflexes or my vision problems that takes my keys. When the time comes, I'm ready to give up the keys. Though I'd like to hope it's further down the road. Then again, Parkinson's isn't giving me a say in the matter.
Traveling has defined me
I'm lucky that "the Jacks" inspired younger me, too. My dad was a big Jack London guy, and on my first trip across America, I played Kerouac by traveling from the east to the west. While there, I went to London's grave in San Francisco.
After driving 19 hours through traffic jams to the top of Maine to see the band Phish in 1997, I took 7 mega drives in my day (the last being in 2003). Two were 9,700 miles each, coast to coast. After that, it has been flying somewhere to drive around somewhere scenic.
I'd love to be out on the interstate again, even as a passenger, but right now Covid hasn't given me a choice in the matter. Of all the things I've done in my life, traveling has definitely been something that defined me. From the moment I traded away the close-to-home Dover Air Force Base assignment for Bentwaters RAFB in England, my destiny was set.
A journey to be proud of
Some of my favorite images from those journeys are the milky way over Mesa Verde, the Pacific Ocean at Big Sur, the Wave in northern Arizona, the birth of a baby buffalo at Custer State Park, the cemeteries of New Orleans, the Corn Palace in Mitchell (South Dakota), elk in Yellowstone, and Bryce Canyon in Utah.
In 1998, I drove through an endless swarm of crickets on a Nevada night to somehow come out staring at a million stars while realizing I needed to be a teacher. I climbed the rocks at Devil's Tower like I was Roy (Richard Dreyfuss) in Close Encounters. In late summer, I went night swimming under the stars floating over the huge mountains of the Sierra Nevada Mountains.
Floating in the bio-luminescent bay of Puerto Rico... check! I waded through the waters of the Virgin River, surrounded by enormous walls that closed in on me at Zion Narrows, but not as tightly as those that pushed up against me in Antelope Canyon. The Grand Canyon and Sistine Chapel left me in tears. I felt ecstatic joy watching Mark McGwire's 55th home run at Busch Stadium in St. Louis (August 30, 1998) with 44,050 of my closest friends.
Fear of vision loss
I've lived in, seen, and visited abroad. I've known cathedrals in Rome and England, Skye's island mountains, double rainbows, and waterfalls in Iceland. I've been to the Turkish/Syrian/Iraqi border and walked in the Caribbean Sea in the islands of Jamaica and the Dominican.
The Byzantine artwork in Meteora's chapel left me in stillness and reverence staring up at the saints. Yes, the work of humanity is beyond amazing, but the pure blues of the 30-foot icicles trumps anything I saw at the Uffizi... and that museum was incredible, as were the carefully cultivated grounds of Longwood Gardens near Philadelphia.
I've lived my life and seen a lot of things. But...what do people do when they fear their vision is going on them? What else do they see when they see blurs or nothingness? It's not a good thing to think about, so...I don't think about it if I can help it. Staying busy helps as does escitalopram, but living in the moment takes work. As my aunt Toot says, "One day at a time, Danny. One day at a time."
The glaucoma test
I'm at the point in my life where I don't cross any bridges on my potential diagnoses until I get there. I wasn't always this way; I've tried to train my mind with survivor stories, philosophy, psychology, and life wisdom. Even fortune cookie wisdom is good!
When I went to the optometrist for glasses, the doctor noted how much my left eye vision had decreased. The teeny-tiny letters on his Viewmaster were all a blur. When it was over, he added the glaucoma test "free toaster for playing." At the time, I didn't know what glaucoma was. I knew it was bad, but I didn't look it up until I wrote this article. Put simply, it's optic nerve damage that leads to blindness.
Instead, I summoned my inner Daniel Goleman and I thought, "We'll see what the test says and take it from there." There's no point crying over a flooded basement until we know the extent of the damage.
In the past, obsessions were a difficulty, but thanks to perspective, self-improvement philosophy, and escitalopram, I'm getting better for myself. I may not have been able to do this for the people I knew who had or were tested for COVID, but I did do this for my glaucoma test. In the end, I got a few odd and uncomfortable tests, a negative diagnosis, and a ticket to come back in a year.
I tend to think that anything wrong is something to do with Parkinson's or medicine I take for it. Doctors never tell me, "All is good, goodbye." There's always something else. Another fun time with a Parkinson's comorbidity. It's like taking a punch after a slap.
If you watch the Food Channel, it's like hearing a Chopped judge say, "Your plating looks good, but your chicken cordon bleu tastes like Shrek's dirty, sweaty socks left under the bed for 4 years."
Guy Fieri would never say that. He'd just give you the sad teddy bear look that he wanted something more for you. Like some of our doctors, nobody wants to disappoint Guy. He's just a fun person with our interests in mind. Either way, we'd feel like, "Can't I go to one appointment without yet another follow-up?"
Vision problems in Parkinson's
When we subscribe to Parkinson's, we get all the bonus channels. So far, I've experienced dry eyes, which means my wife forces open my eyes to give me the drops. I'm too much of a wuss to do it myself.
I've also had blurry eyes side effects (and "headiness") from my fatigue meds. Hence, I stopped them for a little bit - they're better the second time with humidifiers going to relieve dry eyes. I'm sure there will be more. There always is since Parkinson's is the "gift" that keeps giving.
Do you think there is enough awareness of Parkinson's disease?