Parkinson’s Disease – Living with It. Moving on…

Friday was “Tweaking Day.” Eight weeks after optimization, I returned to my neurologist for evaluation and adjustments to this imbedded Boston-Scientific device. For the first time since this all begun, I had slept right through the night, off meds. I could finally enter the examination room feeling and acting like my normal self.

The very best part of the entire evaluation was Dr. Haq’s question soon after he entered the room: “Are you off meds…right now?!” Fifteen hours after taking my last dose of Parkinson’s meds, and he could not tell! Does that give you some idea of how well this device is working? No wonder I find myself calling the remote control “The Magic Button.” In a matter of seconds after activating the device, I go from a stumbling, uncoordinated, handicapped individual to someone who looks and reacts like a normal human being!

Later in the day Friday, I had reason to be at my former school. I was setting up a project with the local Art’s Council, taking a cultural arts program into the local schools. For the first time in six months, I had a constructive contribution to make there.

Only now am I realizing that I entered my former beloved domain with no hint of depression, no sense of loss, not even survivor’s guilt. Capitalizing on experiences in the classroom, and using connections made long ago within the school system, I am able to bring cultural arts to many more students in our area. Serving on the board of the local Arts Council apparently will become a strong identity as I reshape my existence.

Reshaping my existence. That is something that all new retirees do. It is a normal activity! The disability that Parkinson’s inflicted has led to one of the biggest changes we all face in life: moving from a productive wage earner to … Well, I don’t fully know yet what retirees do! Or at least, what this disabled retiree will do. (Some long held dreams are taking shape both in the photography and ministerial realms.) I have arrived at this place several years earlier than planned. The reprieve that DBS affords is giving me the opportunity to really have a retirement. In some ways, it’s like being 21 again, with no limit to possibilities and opportunities. I didn’t see this coming.

As new opportunities come my way, I am sensing the need to move beyond the intense focus on Parkinson’s and DBS. That’s a good thing – it means my life is returning to normal. Yes, it is a different normal from before Parkinson’s, but this new reality looks as if it will suit me equally well.   I’ll take it!

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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