Call to Adventure
I was working at a chiropractic office when I first noticed a tremor in my foot; this diagnosis was confirmed by one of the docs. I was not totally surprised. My brother, Dave, had been diagnosed with Parkinson’s a few years earlier; but I was still scared and anxious about what the future held.
Would I be able to dance at my grandchildren’s weddings; could I stay as active as I had been with marathon running, alpine skiing, and cross country skiing? I naturally feared the prospect of cognition issues; there were so many unknowns. Who did I trust with such vulnerable information? How fast would this disease progress? What were my resources?
I was overwhelmed and felt as though my wonderfully ordinary life was tumbling down, and I just stood back, as an observer, and helplessly watched from a distance. Where was God in all this? Did He care? Should I keep this from my elderly parents who had many medical challenges themselves? Being somewhat of a control freak, this was a very uncomfortable place for me.
In May of 2013 Dr. T, a general neurologist asked me what I thought I had – I told him – he agreed. His nonchalant attitude was off-putting. He immediately prescribed Sinemet to confirm the PD diagnosis. That seemed odd to me; I had done enough research to know that Parkinson’s meds had a laundry list of side effects. Now, as I look back, I regret not advocating for myself to get a Dat Scan instead. These Parkinson’s drugs are far more dangerous than the MDS’ let on.
A few days later, I called Dr. T’s office, asking for the doctor’s notes, which they agreed to send. They were riddled with errors. Most were minor; but, I was irritated to read that I had had car wrecks because of my PD. There were no accidents, but I had mentioned to him that I was more easily startled and that I needed to drive more defensively and intentionally. When I read that my elderly parents were dead, the veins just about popped out of my head. They were failing but not dead yet. I called his office and asked them to correct all of the errors. I didn’t show much grace. Spring loaded? You bet.
I made an appointment with a Movement Disorders Specialist at University of Colorado Health; Dr. K. was the exact opposite of the first doctor. She told me that I did not have bad enough symptoms to require Sinemet, and all I needed was a dopamine agonist and an MAO B inhibitor. Knowing the potential side effects of dyskinesias with Sinemet, I was glad to get off of it.
Somehow at the end of this visit, even though it wasn’t scheduled, we were able to see Cari, a UCH social worker. What a gift she was to us. She tried to explain that our lives were not over – we were just going to experience a dramatic paradigm shift. With trepidation we asked many questions. Little did we realize that each person’s PD is unique — there are different causes, different treatments, different progression, different meds.
We left UCH feeling much more confident that there was life after PD; but we had much to learn. That was one of the times in my life when I was most appreciative of my husband Dan and the strong support and love he demonstrated during perhaps the hardest time in my life. We had already been through some challenges, but this next hurdle was going to push us nearly to the limits.
I’m glad it’s Dan I’m stuck with – I know that he will be there no matter what. There’s so much comfort in that reassurance, even if at times he is overprotective. He’s good about noticing if my jacket sleeve is inside out before I struggle to put it on. But, he is still learning to ask whether I need help, rather than just assuming.
I would learn later that Cari and Dr. K. and Dan would be just the initial members of my amazingly valuable support group. As each new challenge presented itself, I sought out the assistance of yet another specialist, family member or friend. These people were my life blood.
Patti Burnett 