Parkinson's Disease : "Not all our plans pan out, but that's ok"

Hello Bruce, thank you for agreeing to share your experiences with Carenity.

First of all, could you tell us more about yourself? 

In a few months I will be 70 years old, and I can neither believe it nor understand how it happened. I’ve lived and worked all over the world, but for the past ten years I’ve been living in a suburb of New York City, just a few miles from where I lived when I was born. I live with my husband and our cat, and I still see my brother and his family, as well as my sister and her family, on holidays like Thanksgiving and Christmas. 

My career was in education, but I was forced to retire last June when my Parkinson’s symptoms got out of hand. I need to concentrate on them every day now, whether it means going to the gym or the town pool, working with a physical therapist, or seeing one doctor after another. 

I like so many things: reading and writing fiction and poetry; hiking in the woods; eating foods from the countries I lived in; competing in open-water swim races. The longest race I ever swam was in New York’s Hudson River; the distance was over 5 miles (about 8 kilometers). 

You have Parkinson’s Disease. At what age were you diagnosed? What were the first manifestations of the disease? What prompted you to seek help? 

I was diagnosed with Parkinson's Disease in 2012, when I was 59 years old. I was working with a personal trainer at my gym, and we both noticed that my right arm would wobble when doing bench presses, but not my left. My primary care doctor sent me to a neurologist who observed me for a year before concluding that I had PD. By that time I was also limping a little bit, and sometimes my right hand would tremble when I wrote. 

What symptoms did you experience at the time? How often did you have attacks? How did you react?

I lost the ability to smell. Otherwise, I continued to live my life as I had always done. Sure, sometimes I limped a little, and sometimes my hand trembled when I wrote, but for many years after the diagnosis my life proceeded as normal, with a few, mostly minor adjustments. I worked in a public charter school in the Bronx, where I trained the staff in the school’s unique pedagogy for teaching reading and writing. I worked with students myself (Kindergarten – 5th Grade), and taught summer school courses where I had the teachers do the same assignments that we asked the children to do, albeit at a graduate-school level. 

I never had “off” and “on” periods, but there were minor issues that crept up sometimes.   

How did the disease evolve?  

These “minor” issues kept evolving, although for the most part I still carried on with my life, working full time and going to the gym after work. One of my first blog posts in February, 2015, listed things I could no longer do, as well as things that were a challenge and things that were no problem at all. The post was titled, “Can’t. Challenge. Not an Issue.” Here’s what it said: 

Things I can’t do with my right arm or hand: 

• type (most days). 
• brush the teeth on the right side of my face. I have to nod my head up and down to get results. 
• pick up a handful of golf tees and, without using my left hand, place them down one at a time in a neat row, all facing the same direction, without dropping any. 
• twirl spaghetti with a fork. 

Things that are a challenge: 

• using a can opener. 
• rolling up the sleeve on my left arm. 
• writing with a pen or pencil – although this depends a lot on whether I’ve been doing hand exercises with weights. 
• cutting steak or other thick meat at dinner. Moral: Eat less meat! 

Not an issue: 

• washing dishes. (Drat!) 
• reading in bed at night, turning the pages. 
• driving stick shift. 
• rolling over in bed at night or changing positions (an issue for some people with Parkinson’s). 
• opening a stuck jar. Can still apply torque. 
• uncorking a bottle of Malbec. (Ready!) 

What is the impact of Parkinson’s on your personal and professional life? 

Up until September, 2020, PD did not impact my work or social life in a major way. Unless I told them, most people assumed I didn’t have anything wrong with me. I was still competing in long-distance swim races, and I started playing ping pong with a group of Parkies who got together every Wednesday night and were coached by volunteers. If I had to see a doctor in the city, I took the day off from work, rode the train into Manhattan, and walked to all my appointments – a distance of many miles, as I used the trip to eat lunch and dinner with friends who lived in Manhattan or Brooklyn. 

Then the COVID pandemic hit. Suddenly the gym was closed, the town swimming pool, the ping pong center. The school where I worked switched over to online learning. You’d think that working from home would free up a lot of your time, but the other staff and I worked long hours to adapt our pedagogy to an online format. I felt exhausted.   

About the same time, my health took a downturn. I had been successfully dealing with every new symptom that came along (e.g., drooling, bladder urgency, insomnia, dry mouth, constipation), but festinating gait proved a challenge that I couldn’t surmount. I had my first fall in May, 2021, and seriously banged up my knee.   

For the following school year (Sept. 2021 – June 2022) I worked only half time at school, so I could devote more time to my health. I started walking and running on a trail in the woods near my house, and I rode a spin bike at home, usually for an hour at a time, pedaling over 100 revolutions per minute. 

And in June, 2022, I retired from my job. 

What are your treatments? Are you satisfied with it? 

Carbidopa-levodopa is my main drug. I take two pills every three hours, and it has kept many symptoms at bay. For example, I am typing these responses with both hands, with my right hand working just as well as my left.  

I am also seeing a physical therapist to focus on how I walk. I fell so many times due to my festinating gait that I needed help to learn how to avoid future falls. She has me do myriad “tiny” exercises where, for example, I put my foot on the first step of a staircase, bring my other foot up to the same step, then go back down and do it again. The only problem for me is that I spend so much time on these important exercises that I’m falling behind on my other physical training, such as swimming and pedaling at a rapid pace on my spin bike. 

You are the creator of the blog – “Parking Suns”. Aside from an opportunity to use such a creative title, what were your reasons for starting this blog? How did people respond to it? 

I started the blog "Parking Suns" for two reasons: I enjoy writing, and I read an article on the Michael J. Fox Foundation’s Facebook page which included this sentence: “Research suggests that writing, and editing, our own stories may help reduce stress and boost health.”  

I received a lot of positive comments, and in the early days I had a huge readership – one post brought in over 6000 visitors! These days I don’t post a lot, so the readership is down. My new goal is to increase my output and have between five and ten posts every month. 

Much of your life has been spent traversing the world. Could you elaborate on your travels and how it has influenced you as an individual? Did the early onset of Parkinson’s affect your frequency of travel? 

I was born in New York City and until high school I lived in a New York suburb. When I was a freshman in high school my father’s company transferred him to the Mexico City office, so my family moved there. My parents lived in Mexico for about 20 years, but after graduating from high school I returned to the States to attend college. The travel bug had bit me, though, and for summer jobs in college I worked in Amsterdam one year and rural Kenya another.    

When I graduated from college I joined the Peace Corps, which sent me to South Korea for three years to teach English and train teachers in a small provincial city. During school vacations my Peace Corps friends and I travelled around Asia: Japan, Taiwan, Hong Kong, Thailand, Malaysia, Indonesia, and the Philippines.   

In 1978, I returned to New York City, got my Master’s degree, and went back to South Korea for two more years. I came back to New York, completed my doctorate, and this time went to Japan for three years to supervise the English program of an American university’s branch campus located in Japan’s snow country. 

After that, a fellow teacher and I started a corporate training firm which taught writing courses, primarily to executives in Fortune 100 investment banks. Our clients flew me to a dozen countries in Asia, South America, and Europe to run writing workshops. 

How did this affect me? I feel fortunate that I got to see how “average” people in these countries lived their lives (for example, in the Peace Corps I lived with a Korean family), as well as how the new wave of internationally-focused business people lived theirs. If, say, I taught a course for investment bankers in Hong Kong, the participants included people from Singapore, Malaysia, and the Philippines.   

I still traveled after I was diagnosed with Parkinson’s, although I eventually gave that up to work full time at my charter school in the Bronx. I was fortunate to meet in New York a young man who is ethnic Korean but was born and raised in Japan. We eventually married, and one of the perks in our relationship is that he’s an excellent cook of Japanese and Korean food, which makes me happy. 

What are your thoughts on the role of an “enriched environment” for people living with Parkinson’s Disease? *

I think it’s extremely important. One of my first blog posts referred to an online article titled “Enriched Environment May Boost Brain Health.” (Unfortunately, that article is no longer available.) In my post I wrote, “the brain is able to generate new neuronal cells (a process called neurogenesis), and this is good because “’having plentiful neuronal connections—a ‘brain reserve’—is thought to stave off the onset and progression of brain diseases like Parkinson’s and Alzheimer’s.’” 

My post continued: 

As I understand it, you can increase the number and the density of the neuronal connections in your brain by involving yourself in “enriched environments.” There are 5 ways to do this: 

• Physical activity: “…any activity that gets blood circulating to the brain is neuroprotective.” 
• Good nutrition: for example, “… foods with omega-3 fatty acids—such as tuna, salmon, herring and walnuts—seem to have a neuroprotective effect. Vitamins E and C, which are powerful antioxidants, also have shown benefit to the brain.” 
• Staying social: “…individuals who isolate or segregate themselves have higher rates of dementia than those who stay well-socialized.” 
• Mental stimulation: play complex board games; learn a new language; study works of art; read poetry; design your own website and start blogging… 
• Meditation and spirituality: among other reasons, these two options reduce your stress. 

For many years I posted paintings from the Metropolitan Museum of Art and invited my viewers to study the painting and write comments addressing one or more of these questions:  

• What is going on in this picture? 
• What do you see that makes you say that? 

I also started writing sonnets and posting them on my blog. Here’s one that many people commented on: What more can you find? 

********** 

Appointment w/ My Neurologist  

“Have you fallen yet?” she always asks, 
In her paisley scarf and white lab coat. 
“Feeling dizzy? Spit caught in your throat? 
Frustrated that you can’t do daily tasks?” 
She makes me tap my fingers, tap my toes, 
Then follow with my eyes her roving pen. 
Up and down and side to side it goes: 
A font of jokes for a comedian. 
Well, Parkinson’s is not some morbid joke, 
Yet in her office all these tasks evoke 
A childish sense of humor. Soaring mirth 
That doesn’t flag or drag me down to earth. 
What have I learned from my movement disorder? 
‘Tween mirth and death, it’s just a hazy border.  

– Bruce Ballard  

**********

What were the reactions of your family and friends when you were diagnosed? How did they react to it and were they supportive of you all the way? 

Everyone was supportive. I also announced I had PD in an email that I sent to the entire staff at my charter school. It caught the principal off guard, but he quickly responded that he had my back. 

What are your plans for the future? What do you think of patient exchange platforms like Carenity? Do you find the advice and support you are looking for?  

I plan to continue competing in swimming races, both short distances in a pool (say, 100 meters) and long distances in the open water. And I’ll still write and read to my heart’s content.   

I think platforms like Carenity are great because they allow people to connect with others who have the same condition. This is especially valuable for people who live in remote areas where nobody else has the same disease. It’s also good to hear other people’s stories, which can make you reflect on your own. 

What advice would you give to members who are also affected by Parkinson’s Disease?   

Exercise! Just today I read an article about Parkinson’s in the Washington Post; it included this subheading under the title: “A mix of high-intensity aerobics and balance, strengthening and stretching exercises may delay the disease’s onset or, ideally, prevent it altogether.” 

Any last words?   

Here’s a poem I wrote this week for my sister’s birthday card: 

Life 

Each year we age and time accelerates. 

Not all our plans pan out, but that’s OK. 

Our total sum of actions culminates 

In realizing life’s a grand buffet.  

Thank you for the opportunity to share my story!

A big thank you to Bruce for his interview! 

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Take care of yourself!