The Ribbon of Road Ahead

I am Carol Clupny. I don’t give up!

But what if I want to. What if I am tired of all this…the pain, the tremors, the freezing gait, the voice that is getting softer, the inability to get up out of a chair and walk across the room, this disease called Parkinson’s? Getting up out of the chair. yeah. I used to be glued to the chair, now I am cemented.

I once started an entire journey by struggling out of my chair and walking out the door, down three steps and across the yard to the mailbox. The next day I crossed the street. The next and next and next days I walked further and further. Until summer was here and I walked out of my workplace for the last time. In three days, I found myself in northern Spain walking the Camino Frances, one of the ancient pilgrimage paths leading across five hundred miles of mountains, eucalyptus trees, the meseta, and forests to Santiago de Compostela. I carried a backpack with a change of clothes, a blanket, rain gear, water and a snack. It was hard but not undoable.

I woke up at 1 am this morning thinking about that first walk, and how I returned 3 more times until I was “done”. I thought about my friend Barb Swan walking with a group of friends and Maryhelen Peterson who took on the challenge as a solo hiker. At the end they will feel like being “done”, and then they will be planning their next Camino.

I am done with Parkinson’s. It apparently is not done with me.

The return of symptoms I started with 16 years ago has not been fun. On each of Camino walks I grew, and learned, and was victorious over those symptoms. I took down the victory flag after I visited a neurologist last week for a check up. When I asked about my feet getting into a freezing gait, the doctor said, I’m sorry, we don’t have anything for that. What about this stiffness. I can prescribe some more Sinemet at a higher dosage and we can see if that helps. Five times a day. Pain. Extra strength Tylenol,2+every six hours. Where is the bottle of “hope”? I wanted to ask..

My husband is a godsend. He tempered all the information which I had taken as bad news and made things a bit brighter. He does absolutely everything for me and now he needs to undo the pill boxes he just packed and add in the new prescription. It reminded me I can’t do anything around the house, not the dishes or the laundry or paying the bills. He helps me get my shoes and socks on, find my phone, my sketchbook, my hairbrush, my wallet. I have to start dressing at least an hour before we leave. And he misses a meeting or can’t help with a project because now he has to monitor my medication, my fluid intake, my food. And people just don’t understand because I must be faking It. They saw me riding my bike or traveling to speak to a group. It’s a good day when I can pull myself together to get to church. They only see the normal in me not what’s shaking or broken and hurting. People don’t understand. They don’t have Parkinson’s.

So, since I can’t be done with PD, I declare a break. I am going to break from apathy and move through the pain and stiffness of exercise. I am going to ditch the absolute terror of responsibility as Leroy, my support dog and I learn to work together to make me more independent. I am going to laugh at the pain, stiffness shuffling steps, tremors and enjoy getting to know this wonderful dog. Parkinson’s be gone.

Recess starts now.