Bruce Ballard

@bruceballard | contributor
I have Parkinson's disease and am still active athletically.
Community Voices

“I Hate My Life!” Sonnet

I sit inside my doctor’s waiting room

Wishing I was home in bed instead

At night, my bedroom’s colder than a tomb

Allowing me to practice being dead.

I set the thermostat for 53

Surround myself with blankets like a shroud

Pillow on my face so I can’t see

And shout “I hate my fucking life!” out loud.

But wait!  The story doesn’t end quite yet –

In fact, I sleep quite soundly through the night.

At dawn I snatch my phone to read the news

Of all that’s happened since the sun last set –

Then bounce right out of bed and start to write

A sonnet that expresses all my views.

– Bruce Ballard, March, 2020

#MightyPoets

Bruce Ballard

Finding Humor in the World of Parkinson's Disease

Two aspects of Parkinson’s disease that lend themselves to jokes are drooling and poop (constipation as well as fecal incontinence). So without further ado…(without further a poo?)… Drooling 1. Every night when I sleep on my stomach, my husband points out the drool stains on the bedsheet the next morning. If someone will pay my airfare to drought-stricken California, I’ll gladly sleep face down on people’s lawns and nurse them back to life. 2. Back in 1804, if both Vice President Aaron Burr and Treasury Secretary Alexander Hamilton had had Parkinson’s disease, Burr could have said to Hamilton, “I hereby challenge you to a drool! ” and both would have lived to tell the tale. 3. On the morning of the actual duel, Hamilton and Burr crossed the Hudson River from Manhattan to New Jersey, where the laws against dueling were lax. The duel took place on the narrow flatlands below the Palisades cliffs. If, however, Burr had challenged Hamilton to a drooling contest, where would have been the better spot? The New Jersey wetlands! 4. My husband now says that sleeping in the same bed with me is “drool and unusual punishment.” Two Haiku: 1. Sitting on my porch, I munch on crisp green peppers, Drooling emeralds. 2. Our marital bed Now has a second wet spot: My drool-soaked pillow. Poop 1. Q: Everybody knows that if a mathematician is constipated, he/she “works it out with a pencil.” But the “backup” question is, what kind of pencil? A: A number 2. 2. Q: What do New Yorkers call a bird that poops on you as it flies overhead? A: A stool pigeon. 3. While hunting the great white whale, Captain Ahab’s boat was often becalmed at sea, so he’d play solitaire up on deck, spreading the cards out on an empty barrel head. One day a seagull with diarrhea flew overhead and crapped on Ahab’s cards. They were the only cards he had, so for the rest of the voyage everyone called them his “poop deck.” 4. When we were children, our elders often warned us to “mind your P’s and Q’s.” Now that I’m an elder with Parkinson’s disease, I have to mind my pees and poos. 5. When I was 8 years old, I spent a summer with my two very proper, never-married great aunts, Aunt Nora and Aunt Melinda. My parents went away for July and August, doing missionary work in Mwanza, a town in western Tanzania. Aunt Nora and Aunt Melinda took me to their summer cabin in the Catskills. The cabin had a tiny toilet right off the kitchen. Aunt Nora would often spend a half hour or longer in the toilet, and it puzzled me. One afternoon, while Aunt Melinda and I played double solitaire at the kitchen table, Aunt Nora went into the toilet and didn’t come out. She just didn’t come out. The door and walls were thin and you could hear that nothing was going on. The only sounds were the flap and slap when Aunt Melinda and I flipped our cards over, and a bucketful of birdsong off in the woods. “Aunt Melinda,” I asked, “Why does Aunt Nora spend so much time on the toilet?” Aunt Melinda, the more ladylike of the two, paused, then said, “Constipation.” “Constipation? What’s that?” Another pause. Then Aunt Melinda replied, “ Constipation: an amalgamation of two other words: constantly and patient.” We resumed playing cards. A moment later, Aunt Nora opened the toilet door a crack and said, “It’s not so much constantly patient as constantly pushing.” Melinda’s face flushed, but Nora’s toilet didn’t. Haiku: Black ants swarm over An April rainstorm’s mud patch: My poop with flax seeds.

Bruce Ballard

An Example of a Virtual Second Grade Classroom During COVID-19

I work at a public charter school in the Bronx, New York City’s poorest borough. We teach pre-K through Fifth Grade, and my primary job is to train and support the teachers in kindergarten, first and second grades as they learn our school’s pedagogy. It’s a terrific position to be in as I spend much of my day in classrooms, working together with the teachers and students. The kids who attend our school were randomly selected via a public lottery. Yet, on state exams, they not only outperform the other schools in our neighborhood, but also the entire city and even the wealthy suburbs. And most visitors marvel at how relaxed the kids are, how confident. Now, thanks to the COVID-19 pandemic, everything has moved online. Teachers are working with small groups of students on the Zoom online platform, and I get to watch and sometimes participate. I’m also tasked with converting our approach for classroom teaching to the online environment. For the most part, the transition is going well. Here’s an example from a second grade class I observed, and for which I created the materials. I devised a worksheet that shows the students the second sentence in a story. Their task is to read it and devise a first sentence that makes sense. All the second sentences contain vocabulary they studied recently, such as treasure, believe, break, exaggerate, meant. The teacher, Ms. Justice, showed the worksheet on the Zoom screen, and as they worked through it, the students took turns telling her what to write. The first example was already done for them. The second part reads: Billy’s mom opened the gift and said, “Oh, my! Thank you for this lovely present. I’ll treasure it always!” And the first sentence, filled in above it, reads: For his mom’s birthday party, Billy went to a department store and bought his mother a beautiful silk scarf. Thus, you have this coherent story beginning: For his mom’s birthday party, Billy went to a department store and bought his mother a beautiful silk scarf. Billy’s mom opened the gift and said, “Oh, my! Thank you for this lovely present. I’ll treasure it always! Initially, the five students in this Zoom lesson didn’t comprehend what the worksheet was asking them to do, and they asked lots of questions to clear up their confusion. I admit it forces them to think backward. But after we got beyond the first one they had to figure out on their own, they caught on and quickly offered one scenario after another. And Ms. Justice was terrific about typing the exact words they said, so the results were their own voices, unedited. Here are the next examples of “second sentences” the kids had to deal with: “I can’t believe you ate the whole thing,” Sally said. The teacher looked at Kathy and said, “Take a break.” “Don’t exaggerate!” Martha said to her brother. · “That chocolate milk was meant for your sister!” Sam’s mom said. And here’s what they told Ms. Justice to write for each story’s beginning: “Can I have a little piece?” asked Sally’s brother. Later, he asked for another little piece because it tasted so good. “I can’t believe you ate the whole thing,” Sally said. K athy was talking to her friend when a lesson was going on with her class, and she wasn’t paying attention to what the teacher was saying. The teacher looked at Kathy and said, “Take a break.” Martha and her brother were running around the park. Martha’s brother fell on the floor. “I am so tired. I’m like the tiredest person on earth!” screamed Martha’s brother. “Don’t exaggerate!” Martha said to her brother. Sam’s brother LOVED chocolate milk, but that was for his sister’s lunch tomorrow. So, his mother had to hide it in some kind of fridge, but he’s an expert detective! He found it and drank it, but then his mom heard a drinking noise, and she ran down the hallway. “That chocolate milk was meant for your sister!” Sam’s mom said. That’s all we had time for on this day, as Ms. Justice had to move on to a math lesson. When they finished and the kids logged off, Ms. Justice and I reviewed what had transpired. We both noted how the kids’ output accelerated as we worked on subsequent examples. And Ms. Justice’s mother, who’s also a teacher and was in the room at the time, noted the same thing. Ms. Justice also came to this conclusion: I think it goes to show that often the best method is not to try to keep explaining in a way that you think they’ll understand but rather just have them jump into the activity. And this is why “social distancing” is really only “distancing,” as the whole experience with this lesson and the debrief that followed was utterly social and delightful. \ Furthermore, even though I have Parkinson’s disease, this is one of the many instances in my life when I don’t have Parkinson’s at all. Follow this journey on Parking Suns. Concerned about coronavirus? Stay safe using the tips from these articles: Which Face Masks Prevent Against Coronavirus? How Is the New Coronavirus Treated? How to Make Your Own Hand Sanitizer What You Should Know About Social Distancing During COVID-19 8 Soaps You Can Use to Help Prevent the Spread of Illness 10 Face Masks People With Chronic Illness Recommend

Bruce Ballard

Don't 'Senilicize' People With Parkinson's Disease

The one word that drives me up a wall is a word you’ve never heard. That’s because I made it up. The word is “ senilicize.” If “ infantilize ” means “to reduce a person to the state or status of an infant” and/or “to treat a person like a child” (thanks, Wiktionary!), then “ senilicize ” means to treat a person as if they’re senile, old, feeble and decrepit. (I love Wiktionary’s definition for decrepit: “Weakened or worn out from age or wear.”) I occasionally experience people treating me this way now that I’m 67 and 10 years into my Parkinson’s diagnosis, but I was already irked by the practice before that. Let me give you a clear example. From 1994-1997, I lived in rural Japan, where I directed the English program for an American university’s branch campus. The campus was in a village on Japan’s western coast, but nearby were two small cities, Murakami and Shibata. Murakami had a competitive triathlon team that I joined, and Shibata had a road bike team, which I also joined. I was in my early 40s but had swum competitively as an adult in the United States, and I fit right in with both the triathlon team and the bike club. Bike from Japan’s west coast and over the Japan Alps to the east coast on a four-day weekend? No problem! During my second summer there, I started entering Olympic-length triathlons: 1.5 kilometers swim (about one mile), 40 kilometers bike, 10 kilometers run. When I arrived at my first triathlon, I learned that we’d be grouped by age and gender, and given different starting times and different-colored swim caps. It made sense as a few hundred people were competing, and the swimming course was narrow. If everyone started at the same moment, it would lead to mayhem. Here’s how race officials grouped us: 1. The first group was for about 20 elite athletes. They wore gold caps. 2. The second group was for all females. They were given pink caps. (Yes, I know – sexist.) 3. The third group was for men under 30 years of age. Cap color: red. 4. The fourth group was for men aged 30-39. Cap color: green. 5. The final group was men 40 years or older. Cap color: (wait for it…) gray. It irked me that we were color-coded this way and that as a gray cap, I’d be starting my race after all the other groups were underway. The gold-capped elite swimmers had nobody in front of them, giving them an advantage. But for the rest of us, even though each group began a few minutes after the previous one, it indeed turned into mayhem as older contestants with strong swimming ability caught up to and tried to pass the younger swimmers who were slower. Thanks to the narrowness of the swimming course, for much of the race I was climbing over the bodies in front of me, getting kicked and elbowed in the face, and choking on the churning seawater. I passed green caps, red caps, and pink caps, but never caught up with the gold. I was already sensitized to the way women experience discrimination — not only in Japan but across the world — but this was the first time I felt the brunt of ageism. Gray caps and last in line! Fast forward about 10 years to when I received my Parkinson’s diagnosis. I was living in suburban New York and still swimming competitively, and I worked out in my town pool and the local gym. My doctor wrote a prescription for me to receive physical therapy for my Parkinson’s. Eager to get on top of this disease, I went to a huge physical therapy center which looked very similar to my regular gym: a few treadmills, some free weights and weight machines, some stretching mats. But there was one difference: there were chairs against all the walls. On my first day there, a young intake manager briefly tested my strength, reflexes and balance, and wrote up a plan for me to use with one of the trainers whenever I visited. The trainers were all 20-somethings, and the clients were either high school or college athletes who were recovering from a sports injury, or people in their 50s and 60s who were receiving some kind of rehabilitation. Here’s what I experienced: First, whenever a client walked in the door, I noticed the staff trainers greeted the young clients differently than they did the older people like me. To the young clients, the banter was friendly, low-key and familiar: “Hey there, what’s up? How’s the leg? Let’s get started.” The tone was casual. It was like they were all buddies. But when an older adult walked in, many of the trainers changed how they spoke. They raised their pitch and spoke the same way you might talk to a dog or an infant, with lots of rising intonation. “Oh, hello, Mrs. Jones. How are we feeling today? Good? That’s good! We’ll get started in a minute, but until then, why don’t you take it easy in that chair over there? OK? I’ll be right with you. OK?” I rarely, if ever, saw a young client sitting in a chair against the wall, but the older clients sat when they first arrived and again at intervals during their visit. Second, the staff, including the intake manager, grossly underestimated my strength and my general physical condition. For example, one of the exercises they had me do on the first day was wrist curls, where you lay your lower arm on a table and let your hand dangle over the edge. You grip a dumbbell in your hand and curl your wrist up, so your hand is level with the tabletop. The trainer handed me a two-pound dumbbell and told me to try raising it 10 times. “Wait,” I said. “I do this same exercise at my regular gym, but I use 15-pound weights. Can I have something heavier?” The trainer glanced at the clipboard she was carrying, which had the instructions for me from the intake interview. Then she looked at me and said, “My instructions are to give you a 2-pound dumbbell, so let’s use that. OK?” I was miffed, but I was also determined to do whatever I needed to fight back against Parkinson’s, so I went along with what she wanted. This scenario repeated itself with all the other exercises they had me do, every day I went there. And I was often told to “sit down and rest a bit” in one of the chairs lining the wall. I’d drive home wondering if these sessions were doing any good. How could I know? I was still a baby when it came to Parkinson’s disease. Things came to a head a month or so later when I was there on a Saturday morning and was one of the only clients. At the end of my “workout,” I went over to the stretching mats and on my own started doing some yoga poses to stretch my muscles. Eventually, I got into the “standing tree” pose, where you balance on one foot, place the other foot into the opposite leg’s thigh, and stand tall and straight with your arms stretching above your head, hands clasped. A manager (another young woman) came running out of her office, screaming, “Stop that right now!” “What’s the matter?” I asked. “This is very dangerous. You could fall and hurt yourself!” “But I do this all the time when I work out at home or in the gym.” Which is true. I can hold the pose for five minutes if I want. “Well, you are not doing that here! I won’t allow it!” She was not using the standard baby-talk tone of voice with me, but she was still condescending. So I took her words to heart: I left and never went back. And now? In my continual quest to fight off Parkinson’s disease, I not only exercise at my regular gym, but once a week I work out with a personal trainer — a young guy who is always chipper as he pushes me to my limit. Typically, by the end of the first 10 minutes of our session, my T-shirt is drenched with sweat, and my breath is huffing and puffing. I wear a headband to keep the sweat from pouring down my face and stinging my eyes. By the end of the hour, everything I’m wearing is soaked with sweat, and I drive home in a state of bliss. And on other days at the gym, I follow the advice I read from Davis Phinney about riding a stationary bike for an hour at a fast pace — in my case, I pedal at a cadence of 100 revolutions per minute. I have to wipe the bike off when I finish, and there’s often a puddle of sweat on the floor. I am fortunate that I work at a school where everyone knows I have Parkinson’s disease, yet I still have a massive but enjoyable cartload of responsibilities. And I’m never going back to that physical therapy center again. If I encounter someone who tries to senilicize me as they did, I’ll run in the opposite direction.

Bruce Ballard

What It's Like Dealing With Ever-Changing Parkinson's Symptoms

It seems like there are about 100 symptoms you might encounter when you have Parkinson’s disease, and of course, everybody deals with a different set. (Did you know that Parkies are at increased risk for dandruff?) When I look back at what I’ve been through (I was diagnosed in 2012 and started keeping track of my experiences in a blog, parkingsuns.com, in 2015), I’m surprised that issues that irked me at one point (for example, bladder urgency) faded away after awhile, only to be replaced by some other problem (e.g., insomnia).  I typically find a way to deal with the new challenge so it’s no longer an issue, but then another arises to take its place, and usually, I must find a way to deal with that. I call it the Whack-a-Mole method of disease management. For example, drooling. In the spring of 2015, drooling was a bothersome symptom for me. I’d wake up in the morning with an utterly drenched pillow. I blogged about it and invented a lot of jokes. For example: “My husband now says that sleeping in the same bed with me is drool and unusual punishment.” Another: California was going through a drought at the time, and people were unable to water their lawns. I blogged that if someone would pay my airfare from New York, I’d volunteer to sleep face down on their lawn and nurse it back to life. Yet within a few months, drooling stopped being a pitfall for me. I haven’t had any drooling incidents for years. (Note: this was one situation where I didn’t do anything to stop drooling; the problem either went away on its own, or it might have been fixed by a change in my medicine.) Insomnia proved a difficult dilemma to overcome. Some 90% of people with Parkinson’s suffer from one form of insomnia oranother. In my case, I’d wake up at 2:00 a.m., famished, full of energy and unable to sleep the rest of the night. My solution was two-fold: (1) regularly work out with heavy weights at the gym, to make my body tired; and (2) eat a healthy, substantial meal before going to bed: usually grilled chicken breast and lots of raw vegetables, both of which take my stomach a long time to digest. No alcohol (drat!) and no starches like pasta or potatoes, because they give you an energy boost a few hours after you eat them, which you don’t want in the middle of the night. I am happy to report that these days I look forward to going to bed. I sleep soundly and wake up in a good mood. Getting out of bed in the morning with an upbeat attitude signals for me that I am happy with my life. Dry mouth, an under-reported Parkinson’s symptom, affected me early on, but was easy to counter: just have a bottle or thermos of water with you to keep the pipes lubricated. For added benefit, squeeze some lemon or lime into the water container, or add slices of cucumber. I also experienced constipation once. This was a major event that lasted a week. I got out of that by adding ground-up flax seeds to my morning cereal, and now constipation is a thing of the past. (As usual, I invented a lot of jokes when I was dealing with constipation and posted them on my blog. Here’s one: “What do New Yorkers call a bird that poops on you as it flies overhead? A stool pigeon.” Thus I’ve worked my way through a lot of symptoms in my Parkie life, and I feel that I have the upper hand. My current challenge concerns my gait. These days when I wake up in the morning, I stumble about with a festinating gate until my meds kick in. This was fine until last week, when we replaced the tiles on the floor of the master bathroom. The white, faux-marble sill on the door separating the bathroom from the bedroom is now over an inch higher than it was before; it practically looms over the bedroom carpet next to it, looking like the Wall in the Game of Thrones. In my pre-dawn, festinating-gait daze, I trip and stumble when my scuffling slippers collide with the new sill in the doorway. But I know I can fix this. I just have to be more conscious when I climb out of bed, and I must walk like a normal human being — that is, walk as I used to walk before the multi-fingered calamity known as Parkinson’s disease set up shop in my noggin. What new symptom will strike me next? I don’t know. I feel the whole process is like a drama series on Netflix. Tune in next week!

Bruce Ballard

My 8 New Year’s Resolutions as Someone with Parkinson’s Disease

This is what I’m aiming for in the upcoming year. I call it my “2020 vision.” 1. Make going to the gym my top priority. Here’s what often happens on the weekend: I wake up Saturday morning, eat breakfast, then review with my husband all we need to accomplish today. Shop for the week’s groceries, pick up dry cleaning, get something we need at Home Depot, do some work around the house, pick up some prescription medicine at the pharmacy, etc. I try to work a trip to the gym into this schedule, but I’m not always successful. Going forward, I want to hit the gym first thing in the morning, then deal with the other tasks later. 2. Work out for at least 90 minutes. So much research has shown that physical exercise helps delay Parkinson’s progression. The clearest statement on this comes from another blog by fellow Parkie, Benjamin Stecher: “ The only thing proven to prevent or slow the degenerating brain is a healthy lifestyle and plenty of exercise. Though the optimal ‘dose’ is unknown, the trend lines seem to indicate that the further these factors are pushed, the better the results. ” Up until now, I tried to go to the gym three or four times a week, each time for an hour. But now I want to do more. An hour at the gym flies by, and I walk out the door feeling OK, but not like I’ve really pushed my entire body. Ninety minutes or longer will produce much better results, I believe. 3. Enter a few long-distance, open water swims this summer. Last July, I ruptured my Achilles tendon, which sidelined me for the rest of the calendar year, both in swimming and in working out at the gym. I usually compete each summer in a few open water races that range from a mile to two miles, and last summer, I had to cancel all of them. I am itching to get back in the water again to swim these long distances. Entering these races forces me to train harder, and the after-race glow leaves me feeling serene for the rest of the day. 4. Accept that life is hectic, and go with the flow. I find life, especially in New York City and its suburbs, is fast-paced and high pressure. Take Thanksgiving, for example. You work all day the Wednesday before, fight massive rush-hour crowds to get home, then you wake up early Thursday and start cooking and preparing all kinds of foods, using many bowls, pots and pans, and setting out a spruced-up table for the big feast. After everyone’s eaten, you work through the evening to clean up. It’s wild. I used to feel stressed out by the way so much of life (the workweek, the weekends, the holidays) seems to happen so fast, but now I’m putting myself in a new mind-set, accepting what happens, no matter the pace. 5. Read up on death. This sounds morbid, but at this point in my life (I’ll be 67 next month), I want to learn more about death at an intellectual level, especially by reading things written by humans who are far smarter and more articulate than me, and who have thought deeply about the subject. I recently read Leo Tolstoy’s “The Death of Ivan Ilyich,” which caused me to think about my place in the world and whether I’ve lived too much for my own pleasure and not enough for the benefit of society at large. Can I now show more compassion and sympathy for others? (Answer: Yes. Work on it!) I also just read “The Art of Dying,” an extended rumination on having a terminal illness (advanced lung cancer), by Peter Schjeldahl in a recent issue of  The New Yorker. As an art critic for the magazine, he writes: “ Death is like painting rather than like sculpture, because it’s seen from only one side.” He then reviews in random, chaotic order some of the main, as well as trivial, events of his past. It’s like you’re getting an insider’s look at the thought processes of someone in the end stages of his life. And then there’s the flat-out funny “Have Your Lost Your Mind?” by fellow Parkie Michael Kinsley (again in The New Yorker) who jokes about what lies ahead for the baby boomer generation, as so many of us will age and be kept alive by recent medical advances, even though we may go bananas in the process. Kinsley says: “ Writing in [this magazine] a few years ago, I predicted that the ultimate boomer rat race would be the competition to live the longest. I stand by my prediction that, as the moment approaches, dying richer will come to seem pointless compared with dying later. But, on further reflection, I think I underrated the penultimate boomer competition: competitive cognition. The rules are simple: the winner is whoever dies with more of his or her marbles.” All of this is rich food for thought. 6. Stay cognitively active. How? Read more books. Play more ping-pong. Write more blog posts and more poems, especially sonnets. Put myself in more situations where I’m forced to speak one of my two rusty second languages: Korean and Spanish. For example, I lived in Mexico as a high school student, and I majored in Spanish in college. But after graduating from university in 1975, I hardly spoke Spanish again. It was interesting that the two workers who replaced the tile floor in our bathroom last week spoke only Spanish. I spoke with them a lot and felt my linguistic ability coming back, as though through mist. I surprised myself by noticing tiny errors in my speech. For instance, I used the phrase “mujeres o hombres” ( women or men) and then remembered in Spanish, the word for “ or ” (“o”) changes if the following word begins with the same sound.  I should have said “mujeres u hombres.” I was amazed I still held onto that intellectual tidbit. 7. Enjoy my handicapped parking tag. My husband had been urging me for years to get that tag you hang on your car’s rear-view mirror, which allows you to park in the reserved spots near the front doors to the shop or mall you’re about to enter. I kept resisting him for two reasons: First, I don’t feel handicapped. (“But you are,” he’d always respond.)  Second, the spaces reserved for handicapped drivers are often the worst places to park, precisely because they’re right by the main entrance, with pedestrians walking every which way and sometimes small children darting about, not to mention cars nosing their way into and out of other spaces. I’d much rather park far away from the entrance, where there aren’t a lot of cars, and where I have to walk a fair distance to get inside the building. But here’s when the handicap tag pays off: when the weather is horrible (rain, sleet, bitter wind) and you want to get into the building quickly. Now, I’m delighted to have this tag ready if I really need it. 8. Enjoy my life as much as possible, and be more helpful to others around me. ‘ ‘Nuff said. Best wishes to everyone!

Bruce Ballard

The Faces That Greet Me When I Wake Up: Poem About Parkinson’s Disease

On weekdays, my clock radio turns on at 3:58 a.m. Why not 4 a.m.? Because the NPR radio station I listen to gives the local weather for New York, where I live, at 3:59, and at 4 a.m. it starts an hour of news from the BBC — way across the ocean in England. I need to know what New York’s weather is going to be, especially the pre-dawn temperature, so I can prep myself for work. I down my first round of Parkinson’s disease drugs while sitting on the edge of my bed, then stumble with official festinating gait into the bathroom, where a community of familiar faces awaits me. Who are they, and what’s on their mind? Let’s meet them one by one, via some acrostic poetry. (In an acrostic poem, you can read the first letter of each line to find a related word.) T ommy Toilet greets me with eyes wide O pen, and are those tear drops I nching down his face? L et’s plan to sleep a little E xtra this weekend, to make up for T ime lost to insomnia. F loating high above the toilet bowl, I spot friendly Fanny Fish, who S wam up through the pipes to say, “ H owdy! Stay positive today!” F rancine the Impala, A ll decked out in shiny gold, U nusual for a C loven-hoofed ruminant, E xhorts me to take my drugs on schedule T oday, tomorrow and for all eternity. P ray tell, is that a bright idea O n Poseidon’s forehead, or just the S un shining on this Get-Up-And- E njoy-Yourself day! Sure, I may have an I ncurable, mind-blowing, mind-destroying D isease, but there’s lots I can still do, and O nce I’ve figured out today’s plan of action, I’m ready for the N ext step. This poem was originally published on the author’s blog.

Bruce Ballard

The Faces That Greet Me When I Wake Up: Poem About Parkinson’s Disease

On weekdays, my clock radio turns on at 3:58 a.m. Why not 4 a.m.? Because the NPR radio station I listen to gives the local weather for New York, where I live, at 3:59, and at 4 a.m. it starts an hour of news from the BBC — way across the ocean in England. I need to know what New York’s weather is going to be, especially the pre-dawn temperature, so I can prep myself for work. I down my first round of Parkinson’s disease drugs while sitting on the edge of my bed, then stumble with official festinating gait into the bathroom, where a community of familiar faces awaits me. Who are they, and what’s on their mind? Let’s meet them one by one, via some acrostic poetry. (In an acrostic poem, you can read the first letter of each line to find a related word.) T ommy Toilet greets me with eyes wide O pen, and are those tear drops I nching down his face? L et’s plan to sleep a little E xtra this weekend, to make up for T ime lost to insomnia. F loating high above the toilet bowl, I spot friendly Fanny Fish, who S wam up through the pipes to say, “ H owdy! Stay positive today!” F rancine the Impala, A ll decked out in shiny gold, U nusual for a C loven-hoofed ruminant, E xhorts me to take my drugs on schedule T oday, tomorrow and for all eternity. P ray tell, is that a bright idea O n Poseidon’s forehead, or just the S un shining on this Get-Up-And- E njoy-Yourself day! Sure, I may have an I ncurable, mind-blowing, mind-destroying D isease, but there’s lots I can still do, and O nce I’ve figured out today’s plan of action, I’m ready for the N ext step. This poem was originally published on the author’s blog.

Bruce Ballard

How to Cope With an Injury When You Have Parkinson's Disease

You’d think that once you’re stricken with a devastating illness like Parkinson’s, you’d get a free pass on other medical calamities. But that’s not how life works. Fellow blogger Allison Smith (The Perky Parkie) has had to deal with Parkinson’s as well as colon cancer. Sheryl Jedlinski, another fellow blogger (Living Well With Parkinson’s Disease), not only has PD but underwent two knee replacements, followed by surgery and 18 chemo treatments for stage 4 endometrial cancer that had spread beyond her uterus. In light of their experiences, I feel lucky that my second medical condition, while it sounds gruesome, is relatively… well, I was about to say “is relatively a walk in the park,” but in fact, I can’t walk at all. Over the summer, I injured the Achilles tendon on my left foot; eventually, it tore entirely free from the bone. About two weeks ago, a surgeon sliced open the back of my ankle, reached in and grabbed the end of the tendon, pulled it back down to where it belongs and screwed it directly into the bone. Now I have to stay entirely off that foot for about six weeks. No walking allowed. Here’s my foot about two weeks after the operation when the doctor removed the cast and the staples and stuck bandages over the wound. Now I wear the clunky black boot that you see in the screen’s top photo. I keep it on even when I sleep at night. To get around at home, I crawl on my hands and knees. When I’m at work, I use a wheelchair, and someone needs to help me get in and out of the car. No walking allowed! (I learned empirically what “no walking allowed” meant when I absent-mindedly put all my weight on my left foot as I was climbing into bed.  A searing pain shot up my leg like a lightning bolt. Ouch!) So… Why am I writing about this? Because I see it as a conceptual metaphor for having Parkinson’s disease. My torn Achilles tendon is an unexpected medical condition that puts me at a fork in the road, meaning I can choose how I’ll respond to it. If I were to choose the grumpy route, what would infuriate me? Let the bullets fly: My injury has caused me to experience Parkinson’s symptoms that I never had before. For example, I can’t turn over in bed at night while wearing that bulky boot. Similarly, when the hospital’s physical therapist tried to teach me to use crutches, I became dizzy and kept falling to one side or the other. The therapist and her assistant kept catching me as I fell. The same happened when I tried to use the crutches at home: my husband needed to stand next to me and pull me upright whenever I lost my balance. I never fell with Parkinson’s disease before this. I had good balance up until now. Falling is such a downer! For the first few days after the operation, my foot hurt a lot, yet the powerful drug the doctor gave me provided no relief. I had to withdraw from competing in the world’s first table tennis tournament for Parkies: 60 ping pong enthusiasts (including a former Olympian) from a dozen countries converged at a large table-tennis hall near my house last weekend and duked it out in doubles and singles matches. Talk about drama, fun and excitement! I really wanted to do this! Damn! It hurts when I have to crawl on my hands and knees at home. I don’t understand how babies manage it! My knees are scratched and scabby from crawling on the carpet, and it’s just plain painful to crawl on the tiled floor in the bathroom. I can’t go to the gym to exercise, nor can I swim laps in the town pool. I miss my workouts! They’re what keep me sane! But enough with the downers. Let’s choose another route. Can we view my foot operation and recovery as an unusual life experience with a set of challenges that I would never have imagined otherwise? Let’s see… When I leave home to go to work, I have to descend a flight of stairs on our front stoop. I could sit on my bottom and work my way down step by step, but this isn’t practical if I’m wearing work clothes, nor is it dignified(!). So what do I do? I hold myself up with my hands on opposite railings and work my way down by landing on each step with my right foot. This is an enjoyable physical challenge for me — a little scary because the two railings are so far apart, but also a thrill. When I look at the bottom half of my body in the picture below, I imagine that I’m levitating. Here’s a situation that might exasperate some people, but I found amusing. My husband and I recently ate in a restaurant, and at one point, I needed to use the toilet. The restaurant had a large handicapped-accessible restroom. I wheeled myself up to the toilet, grabbed one of the silver handrails on the wall with my right hand, stood up on my good foot (the right foot) and proceeded to pee in the toilet bowl, using my left hand to guide the stream dead center. Everything was going smoothly (or should I say flowing smoothly?) until the wheelchair started rolling away from me because the floor wasn’t level. Panic in the restroom! Fortunately, I was able to stretch out my left leg and hold the wheelchair in place with the toe of the boot until I finished the job. I thought, “This is amazing — all four of my limbs are working productively on independent tasks, and I’m just overseeing everything like a manager. Great teamwork!” I work at a public charter school in the Bronx which is known for its relaxed, friendly atmosphere and for offering children challenges they willingly work hard at. We’re an elementary school, and we try to set up as many unusual situations for the kids to experience as possible. My desk is at a cubicle in a room that’s been divided up into eight smaller spaces. If I have to attend a meeting in another part of the building, the school’s founding director, whose cubicle is next to mine, wheels me out into the hallway. As soon as he sees a student walking alone in the hall, he waylays the child and says, “Please wheel Dr. Ballard to his meeting in Room X.” The child usually smiles in disbelief and seems thrilled by this unexpected opportunity. In addition, it gives the two of us a chance to chitchat, and if we have to round sharp corners or maneuver between tables and chairs, the whole thing turns into a learning experience as the child backs up the wheelchair, tries to reposition it and proceeds forward again. In the photo below we’re just about to make a sharp left turn into the school’s main office. It’s marvelous. In this way, I live for the moment, in the present, finding fun and doable challenges along the way. And that’s how I view having Parkinson’s, too. Sure, there may be rough times ahead withmy foot and with PD. After all, remember that Achilles’ mother held him aloft by his left ankle and dunked the rest of him into the river Styx (“Styx was primarily a feature in the afterworld of classical Greek mythology, similar to the Christian area of Hell… The ferryman Charon often is described as having transported the souls of the newly dead across this river into the underworld” – Wikipedia). But why let that hamper how I live now? P.S. I mentioned two other bloggers who have had to deal with multiple medical maladies. Here are links to their blog posts that I particularly like and are relevant to my own here. Allison Smith, the Perky Parky: I Am Allison’s Parkinson’s. Sheryl Jedlinski, Living Well with Parkinson’s Disease: Throw Open the Doors!

Bruce Ballard

5 Essential Tips for Anyone Newly Diagnosed With Parkinson’s Disease

If you’ve recently been diagnosed with Parkinson’s disease, allow me to welcome you to a new stage in your life that can have many positive aspects. I know that sounds strange, but I’m serious. As a newbie, you stand a good chance of benefitting from all of the recent research on seeking a cure for Parkinson’s and/or improved control over the symptoms. In addition, the world of Parkinson’s patients, doctors and researchers is filled with amazing and inspiring people you’ll be glad to know. Did you have trouble getting an accurate diagnosis? This is true for many people, including me. In 2012, the neurologist I saw misdiagnosed me with multiple sclerosis. My primary care physician told me to visit some other neurologists and movement disorder specialists to get a second opinion. When it became clear to everyone that I had Parkinson’s, the response from the movement disorder specialists was surprisingly nonchalant. “When you’re 90 years old, you may need a wheelchair,” two separate movement disorder specialists told me in an upbeat way. One of them added, “You drive a car on New York City streets, and it’s a stick shift? That’s amazing – and it’s more than I can do!” They weren’t treating the fact that I had Parkinson’s as something only negative. What advice can I give you at this time? Here are some pointers: 1. Most importantly, start an exercise program. As fellow Parkinson blogger Ben Stecher writes: “The only thing proven to prevent or slow the degenerating brain is a healthy lifestyle and plenty of exercise. Though the optimal ‘dose’ is unknown, the trend lines seem to indicate that the further these factors are pushed, the better the results.” Since you are recently diagnosed, I assume you can likely still walk about. If that’s the case, start walking longer and longer distances! And/or join a gym and take spinning classes or yoga or, if you can afford it, work out with a personal trainer. Sign up for the nearest Rock Steady boxing class, which was created exclusively for Parkies and does not involve actually hitting someone – but it produces remarkable results. If you can’t walk, seek out online and onsite exercise classes you can do while sitting. In 2013, the Lancet (a prestigious peer-reviewed medical journal) analyzed over 100 studies that looked at the effect of physical exercise on people with Parkinson’s. Much of the article was highly technical, but you can read my review of the benefits of different kinds of exercise the Lancet article covered. 2. Stay socially active. Now is not the time to stay home and mope! Continue seeing your current friends and family, and try to find out if there’s a good Parkinson’s support group near you. (Note:  if you do attend a support group, but find that the discussions focus only on despair, look elsewhere!) You can also become active online by joining one of the many Facebook groups devoted to Parkinson’s. There are so many blogs written by Parkies where you can read an article and then post a question or response. I’d suggest starting out with Ben Stecher and the Perky Parkie and branching out from there. 3. Keep your mind engaged by reading – especially reading books. Of course, you can read anything you like, such as the award-winning article you’re perusing right now. (Joke!) A recent article in Reader’s Digest reports on research that found that reading whole books, which forces your brain to take in and tie together huge amounts of information, stretches your mind and helps you ward off cognitive decline – an issue all of us Parkies face. In particular, the Reader’s Digest article discusses a study conducted by researchers at Yale University: “To understand why and what each of us can do to get the most out of our words, start by asking the same question the Yale team did: What is it about reading books in particular that boosts our brain power, whereas reading newspapers and magazines doesn’t? For one, the researchers posit, chapter books encourage ‘deep reading.’ Unlike, say, skimming a page of headlines, reading a book (of any genre) forces your brain to think critically and make connections from one chapter to another, and to the outside world. When you make connections, so does your brain, literally forging new pathways between regions in all four lobes and both hemispheres. Over time, these neural networks can promote quicker thinking and may provide a greater defense against the worst effects of cognitive decay.” 4. Listen to music and, if possible, dance, play or sing yourself. The Michael J. Fox Foundation’s website has an excellent overview of the power of music for Parkies. Here’s an excerpt – but make sure you go to the website to read the whole thing: “Researchers have investigated the brain changes that occur when listening to and playing music. The emotional experience of hearing music can increase the release of dopamine — the brain chemical lacking in Parkinson’s disease. People with musical training have better memory, executive function (planning, problem solving, organizing, etc) and visuospatial perception (ability to determine the relationship of objects in space). While playing music, multiple different areas of the brain are activated and in the long run, this leads to an increase in the volume and activity of the corpus callosum — the bridge that allows communication between the two sides of the brain.” 5. Stay upbeat. In many ways, you have a choice as to how you respond to your Parkinson’s diagnosis. I suggest opting for the sunny side of the street. For example, I’m a big fan of the Perky Parky blog, and I always check out the Facebook page “Parkinson’s ‘Laugh with Me’ Group,” which is exclusively about humor. And for an article written by a Parkie that causes many people to laugh outright, check out “Have You Lost Your Mind?“ by Michael Kinsley. Once again, welcome to the new stage in your life. Surround yourself with exercise, friendship, music and literature, and you should be fine for the longest time. Follow this journey on Parking Suns