Welcome to Parkinson’s and Me
Tomorrow, you wake up and cannot walk. You can stumble, but even those graceless steps risk a fall. The bathroom has relocated in the last hours and seems miles away—an unattainable distance. An hour later, post taking a little pill, your legs responsive get you safely to the coffee machine. To those of you with Parkinson’s Disease you know this scenario and those who care for someone with the disease, you go or watch this play out every day. Meals require small bites, a long chew and care in swallowing to avoid choking. A once robust voice requires effort to be more than a soft mumble. The list goes on. With this blog, I propose to address the symptoms of this movement disorder and the pain, emotional and physical that some days overwhelm. Like me, perhaps, you find the world you knew is cut off and you struggle to feel vital.
Can I help others and perhaps myself by writing about my daily Parkinson’s experience? Two people thought so and their suggestions have led to this intimate and vulnerable undertaking. First encounter was with a woman in a hotel lobby as she waited for her ride to the airport. We had a brief conversation during which she asked if I could speak up. I apologized for my mumble, mentioned I had Parkinson’s and immediately went to my LOUD voice. Taken aback by my voice change, she revealed that her father has PD. I told her about some of the things her father could do to improve his condition. With intelligent sparkling eyes, an unforgettable beautiful smile, she looked at me and said, “You should write about your ideas and help other PD people.”
The second stranger was a doctor, a neurologist, whom I met in an airport lounge. He approached me, having judged that I had PD. Once I expressed a willingness to discuss the disease, he went through the usual questions about my condition. After an hour, he wished he could spend one year in my skin. Only then, he said could he understand what it felt like to be Parkinsonian. He thought that it would make him a better and more compassionate doctor. I immediately offered to trade skins for his one year trial.
These two strangers got me thinking. I think the doctor could speculate how painful his share of our trade would be. I have chosen to write about my disease to inform others and address just a few of my life’s problems. I hope to hear from other PD patients about their struggles and solutions.
I ask not for pity for myself and other PD patients and their caregivers, but I want people to understand PD is more than a movement disorder. Doctors like to tell us Parkinson’s patients die with PD, not of PD. While this statement may be true, I have discovered that PD patients die a little bit every day.
Parkinson’s Disease is defined as a progressive, degenerative, neurological disorder for which there is no known cure or even a neural protective solution to slow its downward progression. It is possible to live a long time with it, if the disease is properly attended to. My goal is to make every day less painful, more enjoyable and safer by trying to face the disease’s reality and search for ways to improve my life. I intend to use this forum to share these solutions with all of you who are willing to read my words.
Welcome to my world.