7 Reactions to Parkinson’s Disease

“No question, you have Parkinson’s disease.” The neurologist casually mumbled the words like someone commenting on the weather. I just stared for a moment, then put on my best “I can deal with this” smile and said, “Okay.” Inside I was reviewing mental snapshots of my father’s free fall towards total disability with the same scourge. At the same time I was fast-forwarding to how I will tell my family, the team at work, friends and colleagues about a disease that will get worse.

What do you do when life takes a wrong turn? The sudden death of a loved one? A traumatic accident for which you are responsible? The devastating discovery that you have an incurable disease? Or any serious situation that leaves you feeling like you hit a wall?

Many if not all of us simply REACT. As with most who read this blog, life has been more charmed than marred. But, as is apparent from this blog, PD has presented some challenges. These have often left me in one of seven reaction modes.

Fight. Angry, I wanted to fight back. I did not know how or even why, but it seemed better than doing nothing. Somehow this feels like I regained some control that the disease had taken.

Retreat. Sad and misunderstood, I just wanted to be alone. Of course, this accomplished little except it allowed me to spiral down into self-pity. But it seemed better than watching the pity in others’ eyes.

Ignore. Some call it denial, but to me it was ignoring the fact that life after PD no longer held the same promise, the dreams disappeared or at least differed dramatically. Running from that reality seemed easier than the alternative.

Endure. Coming from a stoic, work-oriented genetic pool, my reaction was often to dig deep and persevere. Related to ignoring, the difference is one of focusing in rather than fleeing.

Negotiate. With the diagnosis, with myself, with God. “Why me?” “What if I was wrongly diagnosed?” “What must I do to be cured?” “Surely,” I thought, “there must be a mistake or some way out of this.”

Defend. Defensiveness was my most prevalent reaction. “Don’t worry about me, I can beat this,” I would think to myself. “Do not pigeonhole me. I am not disabled. I am fine.”

Surrender. Giving up. Resigned to a reality of decline. Although I do react this way at times, I cannot stay there for long both. It is not who I am or want to be. It is the ultimate loss.

These are all reactions. Although they may be “natural”, they are emotional not thoughtful responses. These reactions are places I visit but cannot live for long.

Where I have to put down roots, how I must deal with the disease, is in the acceptance of the diagnosis. I have concluded that my PD is not purposeless pain or purposeful punishment. To succeed at acceptance I need to recognize that I cannot do it alone. I need friends (the clue found in the first letter of each of the 7 reaction words). Friends and family are the foundation for escaping a routine of reaction.