Sometimes we seem to forget that those with Parkinson's, Alzheimer's and any of the many other so far "uncurable" diseases of the central nervous system (and their caregivers) face many of the same problems and situations that we do in taking care of someone with progressive supranuclear palsy. We can all learn from each other - feel for each other - and pray for each other.
Health is a family issue, especially when one member suffers from an incurable disease. How do you face each day with a loved one who is being consumed by Parkinson's Disease? Prayer. Hope for a cure. Love. Lots and lots of love!
It took a while to convince my husband to see a doctor. The hand tremor and body stiffness sent up a red flag to me. Looking back, I think it did for him too, but he would rather not know the diagnosis for sure. I understood that, yet I knew getting help as early as possible was imperative.
"You may have ten good years, or you could have thirty good years," the doctor said. Ten years used to seem like forever. That day it seemed very short as I allowed my mind to race ahead and examine the symptoms I knew my husband would have to live with.
We began to read everything we could find on the disease. None of the articles offered real hope, but they did let us know that researchers are looking for a cure. The question neither of us dared ask: "Will it come soon enough to help us?"
The months turned into a year. I noted the progression in my journal. The stiffness was worse. His energy level was very low. At times his voice was so husky he could barely talk. It broke my heart to sit beside him in church and not hear him singing. It hurt when I had to find the page in the hymnal because his fingers refused to work. All I knew to do was move a little closer and put my hand on his arm or hold his hand in mine. That always helped the tremor.
Two years have passed now, and the disease is slowly progressing. Some days are good. He laughs and smiles and talks. Some days are bad. He is quiet and withdrawn. I take my cues from him, but I always make sure he feels my love.
One day he looked at me with unshed tears and said, "I'm afraid you won't like me when I get bad with this disease." I wrapped my arms around him, planted a big kiss on his cheek and replied, "I will love forever and always. This disease isn't big enough to take my love from you." He smiled, and I knew I must make him feel my love every single day. And so I have by simple little things like tucking him into bed, kissing him on the forehead, preparing his favorite dishes, holding his hand while we watch television and whatever else I can think of.
The prognosis is not good, but I know we will see this through together. We share a love that has endured many hardships and sorrows. Our love will endure the progression of Parkinson's Disease. If you know the power of prayer, say a prayer for my husband and me. We thank you.
