Parkinson’s Disease – Reality Check

The DBS current has been constantly flowing into my brain for 6 weeks now, and there are some realities that demand an audience. First: there will be a continual need for adjusting, or “tweaking” as we DBS folks like to put it. DBS is not a cure for Parkinson’s. Parkinson’s is progressive and will continue its disruption of normal life. Fortunately, as things change, the stimulus can be adjusted to address many of the issues. The proverbial roller coaster is still in play, but the ups and downs are much less intrusive. Life is definitely better, but I cannot go on my merry way, totally ignoring Parkinson’s presence.

Second: perhaps the most frustrating aspect of Parkinson’s is its unpredictability. One day, one hour, even one minute, I can look and feel “normal,” and the next, I am off balance, climbing stairs with extreme difficulty, bumping into walls or furniture or people, shaking and twisting with muscle cramps. There is never a pattern to these episodes, so there is nothing I can fix. Controlling my existence seems more and more improbable, although DBS is definitely a step in that direction.

Third: the same pre-DBS issues are still in play. Parkinson symptoms seem to increase in direct proportion to stress levels and exhaustion. Apparently, not even the miracles of brain surgery can cancel the negative effects of those issues that plague us even in “normal” life.

In recent months, my unwelcomed “guest” has somehow become a magnifying glass – yielding an intense perspective that often gives me pause. At times, it’s as if I can see and understand more clearly than ever before: Time is short; don’t take it for granted. Make the most of each moment. Energy is no longer an unlimited commodity; rather, it is a valuable resource to be guarded and managed wisely. Choose carefully how to spend this precious resource. Focus on the most important things; ditch the others.

The flip side is that if I dwell on those “heavy” ideas too long, I find myself sliding down the slippery slope of the “efficiency god,” losing spontaneity, and facing again the limitations that are part of the Parkinson’s world. I have slammed into disability/early retirement much sooner than planned. I have to keep reminding myself of the things I longed for when I was locked into the demanding routines of a school teacher’s job: a leisurely cup of coffee in the morning; breakfast at the table, instead of eating cereal from a mug on the way to work; time to get lost in the story of a good book; lunch on real dishes, with adult food choices, table clothes, and adult conversation. And, there is the approaching birth of a special grandchild and knowing I can go and be “Grandma” with few time constraints.

But I find these joyous things tinged, somehow, with the knowledge that this isn’t quite how I had things planned. The reality is that I am no longer the efficient, multi-tasking “super-woman” of even a year ago. My energy rarely lasts as long as my “want to.” My tolerance for disorganization is at an all-time low…yet I am more disorganized than ever before. I am finding that I no longer cope well with stress. That fact, in itself, is quite stressful! For example, a recent episode, with looking glass reality, pointed out that some of my organizational ability has been compromised. I don’t know that the surgery caused it, and for the most part, no one else would notice it. But I notice it and it is incredibly frustrating. Imagine the chagrin when I could not produce some all-important papers needed by my financial advisor. Imagine finding not one, but three file folders in the finances drawer – all with the same label, but placed in different places throughout the drawer! The papers were there – but I have not figured out why I made three separate folders for the same thing!

"Scene Along he Way" gets new exposure in artists' co-op setting.

“Scene Along he Way” gets new exposure in artists’ co-op setting.

In the midst of post-DBS realities, there are some good things happening. Dreams that I’ve held close for most of my life as an adult oddly seem to be within reach. I have often dreamed of being a professional photographer – one who captures and creates fine works of art. To my surprise, I have landed on the ground floor of a budding artists’ co-operative venture in our uptown district. Fortunately, it is not nearly as strenuous as the school job; the neurologist’s suggestion of “light work with frequent breaks” should fit well with the demands of this small business venture. Besides the obvious chance to market my photography, this co-op is giving desperately needed structure to my days and focus to the photography process.

Another long-held dream is also in the making. I went to graduate school, preparing for music ministry in a local church. Unfortunately, I hit the church scene just as the organization of churches in my denomination was convulsing in the throes of a fundamentalist/moderate/liberal fragmentation. One of my denomination’s ways of recognizing one’s call to the Ministry is to ordain a new young minister in a service of “laying on of hands.” Sadly, a major bone of contention has been the ordination of women. For all the years of my career, I have continued to deal with the conflicting realities of my own personal sense of call and commitment to Ministry and the realization that many folks around me never understood or accepted that call and commitment. Now – yes, in the wake of DBS surgery and the realities of early retirement – my church has begun the process that will lead to my ordination. It seems more avenues for Ministry are open for me than ever before!

Some folks would call such things serendipitous. Some would say I’m just lucky. Others would call it redemption, or God at work in my life. Perhaps all of those perspectives shed light on this new reality of living with a chronic illness and an amazing medical intervention. I’ve been given a reprieve. Not without limits, of course. There were always limits before, but I could largely ignore them or think my way around them. Now, I approach the days with a renewed wisdom. Do I always get it right? No. Do I sometimes overdo? Often. Do I look at living with Parkinson’s with new determination? Definitely. Is my life better for DBS? Without a doubt.

About vivace1017

I grew up in the hills of East Tennessee, in a well-educated, articulate, highly creative community. Venturing forth from my hometown at age 17, I attended a small college near Knoxville, and began my career as a music teacher in Taichung, Taiwan. I wound my way from there through grad school in Louisville, KY to a brief sojourn in Georgia, and landed finally, with a husband and two sons in south central Virginia. My career journey has meandered from private music studio to public school classroom, from church organ bench to grant writing and photography. Now, roles are changing again, settling into places that have always been a part of me, yet are only now realizing my best attention. This site is my internal voice as I work through who I have been, who I want to be, and the legacy I want to leave in my wake.
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4 Responses to Parkinson’s Disease – Reality Check

  1. Debbie McKinney says:

    Love reading your articles.

  2. Deb Watring says:

    Thank you so much for sharing your journey – so well written.

  3. Ardie Roddy says:

    Keep on keeping girl! I love reading your postings.

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