I hadn’t been feeling well for a while, but it was an odd collection of complaints. My torso was twisted and bent at an odd and painful angle; I was terribly fatigued; my arms would suddenly jerk outward; and worst of all, I acted out my dreams, yelling so loud I woke the neighbors not to mention my bedmate.
I spoke to my primary care physician, and she couldn’t make much sense of this grab bag of symptoms either. And then I read Oliver Sack’s On The Move, which recounts the experiences narrated at length in Awakenings, his book on post-encephalitic Parkinson’s patients, which I read before along with many of his books. In Awakenings and On the Move, he describes a cluster of symptoms similar to the ones I was experiencing. Then I performed that most dangerous of acts under such conditions—a Google search, which tells you far more than you want to know, but in my case, reinforced my suspicions. I laid my finding before another doctor, who said, Parkinson’s wasn’t his field but I had presented enough reasons to go to a specialist to be examined, and he wrote down the name and number of one of the leading experts in the field.
The first appointment I got was in nine months, but by pulling strings, I got it reduced to two. After several hours of testing by his assistant, he entered the examining room for the first time, shook my hand and cheerfully announced, “You’re right, you have Parkinson’s.” I felt strangely euphoric. I guessed right in the medical quiz show called Diagnosis, and for a second I thought of going to med school to sharpen my skills.
He prescribed the standard medication, insisted that I go for physical therapy and told me to come back in six months. The fatigue mostly lifted; I didn’t bend in that peculiar way I had, and my sleep was a little, but not much better.
In the six years since the diagnosis, I have learned several things. The most important is that Parkinson’s, like any progressive disease, progresses. The original symptoms get better and worse, but new symptoms show up, and those new symptoms affect the older symptoms.
Parkinson’s is the most common neuro-motor disease caused when the cells in your brain that produce dopamine die off. Dopamine is a neurotransmitter involved in communicating and coordinating movement throughout the body. Without dopamine the signals between brain and body get scrambled. Sometimes this leads to “freezing,” the inability to move, which can last for seconds or days.
I’ve frozen briefly only once on an escalator in Penn Station. My physical therapist laughed. Escalators seem to trigger all sorts of Parkinsonian symptoms. “Take the elevator,” she suggested. But there is the opposite of freezing. Occasionally when I walk, I start accelerating, going faster and faster unable to stop until I am completely out of breath. So compulsive is this speeding up that I can’t slow down for the people strolling leisurely in front of me. If I can’t circle around them, I will plow them down.
No two patients develop the same assortment of quirky symptoms. I have developed diplopia, or double vision. It’s not a common symptom, but the most common eye problem related to Parkinson’s. Parkinson’s affects movement, and eyes move, not like legs or arms, but still, they move as they follow objects up, down or across the field of vision or when they converge on something approaching. The movement of one eye has to coordinate with the movement of the other, and both eyes have to coordinate with head movement.
I started out with rather mild diplopia, but it has progressed rather rapidly. Now, my eyes barely move when objects come closer, and I cannot track smoothly even the slowest object crossing my line of vision. Driving, consequently, is impossible. My reading glasses are so heavy, I need clips to keep them from falling off my face. And it turns out I can’t get bifocals, so I’m constantly switching from one pair to another.
All of these adjustments would be annoying, but not dangerous, but as Parkinson’s develops so, too, do problems of balance, and one of the most useful ways of maintaining balance is through sight. But diplopia makes my eyesight a far less reliable way of maintaining balance, and I have developed that most dangerous Parkinsonian symptom–falling.
This all may sound grim, but it is not entirely. If I’m bored, I take off my glasses, and it’s like looking through a kaleidoscope. Figures double or overlap, and I find that without my glasses even the shabbiest garden turns into an impressionist masterpiece. I just make sure I’m seated, or I might fall into the lily pond.
Parkinson’s, like any progressive disease, isn’t one you can make a lasting arrangement with, like agreeing to a diet or a regiment of pills. Because it progresses, it keeps me on my toes. A strategy that worked for a while may not work any longer. I used to correct my painful tilt by holding on to lampposts and forcing myself to stand erect.
At first, I needed to do that every couple of blocks, then every block, then every lamppost. Then I learned by using two hiking poles, I got even better results. Necessity is the mother of invention, and Parkinson’s keeps me always looking for different ways to solve problems. This can be very frustrating, but it can be very exciting.
I get painful spasms in my legs. I discovered that in my sleep I would throw my legs off the bed, and from this, I learned that lowering my legs kept them from going into spasm. I suppose I could have tilted the bed in some way, but it was simpler buying a recliner. Now when I wake up with leg spasms, I lie back in the recliner, and in a matter of minutes, I’m pain-free.
I do all the dishwashing in our family, and I found that bending over the sink became more and more painful, an insight that housewives have probably known for centuries. I tried a chair, but that put me below the sink, so I got an adjustable stool, a gleaming silver seat that reminds me of a soda fountain in the 1950s. It isn’t perfect, but it’s pretty.
The key for me is my attitude toward the disease. I can’t blame myself for getting it. It’s not the result of risky behaviors.
It does seem to run in my family, or rather it stumbles through the family. As a kid, I watched cartoons in which a character innocently walks down the street, while three floors above him a grand piano is falling out of a window. I have always felt that grand pianos were falling all around me, and one day it would be my bad luck to be hit by one. I do what the cartoon character does—he lifts his body that has become flat as a pancake, dusts himself off, and continues on.
But more than that. I try to look at the challenges that Parkinson puts before me not as obstacles or barriers, but as tests of my ingenuity, challenges to meet, puzzles to be solved. And I’m not put off if a solution fails. It simply means trying something else.
For example, I watch the world walking along, reading and sending text messages into their mobile phones. I can’t do it. My hand shakes, and I hit the wrong button, and find myself falling down the rabbit hole of totally useless menus. I’m still working on solutions to these problems. I learned that I must sit down preferably with a table in front of me. But I haven’t developed the right touch. Friends say that I bang at the screen too hard and that mobile phones want a gentle touch. But my warm caress doesn’t seem to excite it either. I keep working on it, but the touch that seems to come so naturally to 12-year-olds remains a mystery to me.
Some symptoms of Parkinson’s I have enjoyed. Like many people with Parkinson’s, I have auditory hallucinations. The first time I noticed it, I was sitting on my porch. It was spring, and I heard from a distance a high school band playing a Sousa-like march. Every once in a while the trumpets would blare, the tubas boom. I thought I could hear the tinkle of the glockenspiels. I asked people in the neighborhood where was this high school, and finally, I was told, that with budget cuts, no high school in the city had such a band. I was disappointed, but I still like to sit on the porch and listen to them practice (although they are not getting better). A fan in the house contains a choir performing what sounds like Gregorian chants. It’s very soothing. The radiator contains a radio badly tuned to a big band station. I am surrounded by music as I have never been before.
On the other hand, I no longer can play the piano as I once could. Not that I was ever any good, but I could fake showtunes and Mozart Sonatas. My fingers now move too slowly (largo is now my presto), and they get frozen above the keys, unsure how to press down. My neighbor is a cellist for the Baltimore Symphony. She used to say that she enjoyed hearing me through our common wall because I was having so much fun. And it was fun. But now it is painful and frustrating, and I play only after I see her leave her house. She deserves to be spared.
Our house is three floors with a basement. A Baltimore rowhouse over a hundred-years-old. When I first was diagnosed, my spouse and I looked for an apartment so I could have everything on one floor. But we didn’t find anything that suited us, and the truth is we love the house which had restaurants, a pharmacy, a grocery store, and a bank within a block of our door. It didn’t make sense to move.
But since Covid, several of the restaurants have gone under. The owners of the grocery store decided to retire. The bank is temporarily closed, or so it says on its door. The things that seemed close at hand are no longer available. Living with Parkinson’s has meant living with Covid, and all our calculations have gone awry.
I still can make it up the three flights of stairs. I do it several times a day slowly. Recently I thought of planning ahead and having an elevator installed. It wouldn’t be cheap, but it would mean I could stay in the house longer. I found what seemed to be the perfect elevator, easily adaptable to the house. An engineer came and found a space where one could be installed without too much demolition. But he just called back, and said our ceilings are too tall for the elevator to go up all three stories. Now we have to decide whether it would be worth it to go up only two. Should I be planning to say goodbye to a third of the house? Should we go back and look at more apartments? Does it make sense to plan for a time when I’ll be confined to a wheelchair? Or should we wait for a crisis—falling down a flight of stairs and doing irreparable damage?
It’s a first-world problem, I know. In the third world, I wouldn’t have a three-story house. Solutions are often only opened to the privileged. Among those less privileged I would be an old man who shakes a lot and hears music from nowhere. A holy man or a devil.
I could more easily adjust to Parkinson’s if it weren’t a moving target always demanding new solutions. But when I am in a good mood, I think of how inventive it has forced me to be. The wonderful people I’ve met in exercise classes. The really remarkable doctors and therapists I’ve worked with. What wonderful things I have had the luxury to think of—an elevator in my own house, just for me. Such splendor if the ceilings hadn’t been so high.
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This post is republished on Medium.
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From the midst of a progressive illness that one might be excused for rendering entirely in blues, Bergman’s vision, like the lily pond, presents a surface of tangled growth, reveals unclear depths and opens to reflected light. Masterful. Thank you.
What a wonderful essay!