Live. Local. Late-breaking.

The imperfect clock picture signifies the imperfect nature of time with Parkinson's.
Time is at the center of news. It’s also at the center of life with Parkinson’s.

By Teresa Swartz Roberts

Blog post 25. Copyright 2018

            Live. Local. Late-breaking.

            Every broadcast market has at least one news team that describes its newscast with the three Ls. Something about those words must appeal to viewers. Maybe it’s the alliteration. Same with Live, Laugh, Love. Maybe it’s the way the slogan encompasses the who-what-when-where-why-and-how nature of journalism. This is happening now to you or your neighbor. Saying late-breaking gives us an excuse to have less than the full story. You will have to keep watching to understand the why and how.

            I am live. I’ve had another Parkinson’s anniversary. It’s been three years since I was diagnosed. Three years of fighting a battle that, before diagnosis, I had no weapons for. I responded to the standard treatment of carbidopa-levodopa. My therapists helped my body relearn how to reach for the top shelf, dance like no one is watching, make myself heard.

            It’s a good life, a blessed life. I am able to practice my religion in a loving church community. I am able to be creative as long as I give myself time. And I have time. I have the perfect care partner, My Honey, and the perfect son, The Boy. I have people in my life who love and care for me.

            As long as I am mindful and medicated, I can live well. Trying to remain in charge of my body takes pretty much all of my time: the 45 minutes of stretching and resistance I do before getting out of bed, the swallowing exercises I do with breakfast, the eyebrow raises and tongue-clicks I do to keep smiling, the shouting “It’s time to wash up for dinner!” and other nonsense while behind the wheel to keep my voice loud enough for everyday phrases.

            I have become enough of a fixture at the Collins Hill Aquatic Center that I was missed when I had to avoid the water for a few weeks after a minor eye surgery. (And I definitely missed the folks there.) I’ve done Water Arthritis class and Tai Chi for Health class, and my husband is teaching me how to box in our garage. I am meeting other people with Parkinson’s (PWPs) at the YMCA Parkinson’s Movement class and Yoga for PD at Yoga Dawning, a studio in Suwannee. I see in them where I’ve been and where I’m headed.

            My world is pretty local. I don’t even realize I am disabled until I leave my comfortable, accessible environment and face stairs or short toilets. I don’t drive into downtown Atlanta. The eye doctor asked me how lights look when I drive at night, and my answer was that I don’t go out at night. I know this sounds pathetic, but I don’t feel pathetic. I stretch my body and my mind and my spirit. I just do it all within a 20-mile radius.

            Here’s the breaking news: I’m in another transition with my Parkinson’s Disease. I didn’t really understand on/off episodes. My medicine wore off, and I’d occasionally have an off day, but now I’m looking at on/off as a switch that gets flipped. I’m writing this exactly 47 minutes before my next dose of carbidopa-levodopa. I know that at that point, I will need dopamine. I will feel my ankles start to stiffen and my back give me more of an argument when I ask it to straighten. I will start to shuffle when I walk and take several steps to turn a corner rather than one.

            While I have some productive time every day, I am unreliable, unable to sustain the vigor needed to work a job. Recently, my husband and I met with a financial consultant who asked about the reasons I had worked in the past and whether I felt the need, other than financially, to work now. You are what you do, after all. I did struggle with my identity after giving up my job at a small liberal arts university in Maine. But I still have an identity. I know who I am. I am very good at being myself for short periods of time.

I thought I knew how to live in the moment, but I had no idea.

            I thought I knew how to live in the moment, but I had no idea. I’m still learning. I don’t have the full story yet. I’m still live. Stay tuned.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s