Happy Anniversary or Yay, Parkinson’s!

By Teresa Swartz Roberts

Blog post 1. Copyright 2016

A year ago Feb. 9 I was diagnosed with Parkinson’s Disease. And I am grateful.

I have been given 12 months I didn’t have. It’s not so much that I know I would have died by now. It’s that I –my essence– was dying. My world was getting smaller and smaller, despite my having relocated from rural Maine to Metro Atlanta. I could concentrate only on the three feet in front of me, stooped and unable to persuade my legs to do what I asked of them, no matter how much I begged, sometimes aloud. “Come on, take a step. Reach. Take a step.”

For the last 365 days I have been about living, not dying. Just knowing what it was, the shadow that had fallen over my life just when my family needed me to be a source of light, made a difference. There was now a reason for my pain, my posture, my preoccupation with movement. I have Parkinson’s Disease. I have had Parkinson’s Disease for a while now.

How come I didn’t know? I did, on some level. I took an online test for Parkinson’s. I could draw a spiral without having the line touch from inside to out. That was supposed to mean I didn’t have it. My tremors were in my back, and I thought they were back spasms. So did my nurse practitioner, who prescribed cyclobenzeprine, a muscle relaxant. My chiropractor made the observation that best described how my back felt. “Teresa, it’s no wonder you are exhausted. Your back muscles are tensing and never letting go.” I had been describing the tension as actively hunching over, shaking with the effort. That’s still how it feels. I can sit at the kitchen table to peel potatoes and feel my back, glutes, and legs tensing up and beginning to shake as if I am squatting with 200 pounds on my shoulders.

At this point, I have strategies to deal with that feeling. For one thing, I change positions. Maybe I stand instead of sitting at the table. Maybe I do some exercises. I tense my muscles even harder and then force them to relax, concentrating with all my meditative strength on not shaking, on letting my muscles rest. I stretch out the toes on my right foot, where they curl under, making them release the sock beneath.

By the time I was diagnosed with Parkinson’s, I had also been diagnosed with degenerative spine disease the October before and arthritis years earlier. Those mobility-impairing conditions muddied the symptoms of Parkinson’s, and it was not until the tremors had spread to my right hand and chin that they were obvious to others.

The day I was diagnosed, my son was in the neurologist’s waiting room. He had started driving me most places. I met him in stunned silence, thinking that I would tell my family after my blood test and brain MRI that could rule out other symptom-producing conditions. The thing is, the other conditions were stroke and brain cancer. There was no good news there, so I told my husband and son about the Parkinson’s that evening before supper. I asked my husband to order a pizza and give a big tip to the delivery person because I was thankful that someone would bring us dinner when I was unable to provide.

A done list is the things that you won’t necessarily put on the to-do list but that are important–often more important–than what goes on the to-do list. . .
Today my done list will say that I wrote this journal entry.

All the clichés about livin’ like you’re dyin’ are true. Well, almost. I don’t have a hankering to run with the bulls or tour Antarctica. I did start learning to paint. I always said I would learn to paint someday. Someday is now. I don’t know how long I will be able to hold a brush. I appreciate every day. My prayer is to be a blessing to someone today. While I do sometimes set goals, I emphasize my done list over my to-do list. A done list is the things that you won’t necessarily put on the to-do list but that are important–often more important–than what goes on the to-do list: having an animated lunchtime conversation with my son about an article he read today; seeing the spark in my husband’s face as he talks about the student he gave advice to this afternoon, the one who is thinking of going to graduate school to be a librarian; calling my dad to talk about the foot of snow that is supposed to fall on the mountain where he lives; going to a friend’s house to work on my first painting. Today my done list will say that I wrote this journal entry.

Some activities have to show up on the done list often. I must do at least 30 minutes of physical therapy exercises every morning before starting my day. I should rephrase that: I get to do at least 30 minutes of physical therapy exercises every morning that help me ease into my day. My bed exercises help me become mindful of how my body feels and how it moves. They are meditative, and I often find myself praying or completely emptying my mind of everything but the count as I move, tense, and release.

Every morning that I am alone in the car, I recalibrate my voice, the voice I had started to lose to Parkinson’s, with speech therapy exercises. After a series of “aaah”s, I shout ten everyday phrases I provided when my speech therapist asked for examples that I say on a regular basis. I have learned that I should not do my vocal exercises when I am stopped at a light. Here in temperate Georgia many drivers have their windows down and are startled when they hear “Good morning!” or “I love you!” from the next car. I have gotten some funny looks.

My physical therapist in the Big and Loud program for Parkinson’s told me that my carbidopa-levodopa is only one medicine for my Parkinson’s. Exercise is my other med, and I need to take it every day, twice a day. I start with exercises in bed so that, no matter what, I will have exercised that day. My other exercise three days a week comes in the form of water walking and gentle exercise in a county-run pool. From the time I moved to Georgia, before my diagnosis, I sought out exercise I could do. The people who worked at the pool here made me feel welcome, made me feel as if I could belong there.

I had the Parkinson’s mask back then. My neurologist called it that, and I can see why. My son and I have a ritual of making faces at each other. My facial muscles forgot how. Once I got my medicine, smiling got easier. Now I exercise my face every day. Yes, I said I exercise my face every day. It feels good, and now I can be reasonably sure I am grinning when I mean to grin.

Despite the mask, kind people who also walk at the pool were friendly to me. They became my social circle. Over time, they have become more and more important to my daily life. We check on each other when one of us doesn’t show up at the pool, and we share our life stories while we trudge and kick and stretch. One 19-year-old lifeguard and I talk every time I go to the pool. She reminds me of the college students I used to teach in Maine.

That life is far behind me now. I was a faculty member, writing center director, and coordinator of a developmental writing program at a small public liberal arts college in western Maine. When my husband’s job with the university system was eliminated, we lost our hometown of 18 years, the place we had raised our son. My husband found a wonderful job here in welcoming Georgia, where snow is rare but falling today. I figured I would get a job doing something similar to what I had been doing. But I knew on some level that I might already be too sick. I had a Skype interview with the same college where my husband works, but I was antsy about the fact that the human resources page said that the successful candidate would have to be able to move freely from building to building on campus. I wasn’t sure I could do that. As it was, I was driving from building to building after teaching in the morning rather than walking a block.

Once I was diagnosed, I realized that my working days were over. I got a little teary about it with my physical therapist, and she said that maybe I would be able to work full-time after completing my Big therapy. I made a joke about work interfering with my nap schedule. It wasn’t really much of a joke. Parkinson’s makes me tired. This is the longest I’ve spent in front of computer since leaving work in June 2014. And I started this journal entry yesterday. I had thought about writing a book about Parkinson’s. Maybe I still will, if there is time. It could be another facet of my treatment, I guess. For now, I think I’m done. Happy anniversary.