Living BIG

The doctor delivered his bad news in a dry, emotionless professional tone, although for a nano second, I thought I saw something like pity flash across his eyes.

When, nine years ago, the neurologist confirmed that Parkinson's Disease lurked in my brain and was gradually asserting its dominance over the control of my movements and other basic but essential components of existence such as balance, coordination, and structured thinking, my afflicted brain crouched in the shadows of denial and regret. Today, dyskinesia, fatigue, lightheadedness, uncontrollable jerking, etc., etc., render denial impossible. Since I can’t deny the PD, I try to handle the regrets by living BIG.

I didn’t know much about PD when I learned that I had it. Two of my mother’s brothers lived out their lives in wheelchairs because of PD. One might think that fact alone would have spurred curiosity. Now I know more about PD than I want.

In response to my questions, that first neurologist said that a few of his patients survived “fifteen years.” He appeared to think that was a positive. He said PD was a “boutique illness.” Symptoms differed for everyone. It was impossible to know exactly how I would be affected. He didn’t offer anything else except a future consisting of drugs to “manage” the disease and drugs to manage the drugs. Thus began my PD education, which, so far, has included exercise classes, support groups, other people with PD, and my own experience.

One thing I do know is that people with PD live in a smaller world than the earth occupied by non-PD beings. We often shuffle our feet and walk with a mincing tentative gait. We hunch over, lean to one side, or bend forward like puppets with broken strings. We talk in whispers, hesitate in crowds, and stay home rather than interact with a world of fast moving, impatient strangers and immobile sharp edges. We suddenly fall because our body twists on its own in a room without space for twisting, causing bruises and broken bones. Some have said that having PD is to live in a shrinking existence.

If that is correct, then I should live BIG. Until it becomes impossible, I should shout my words and stimulate my voice; take exaggerated steps with plenty of jumping and running; struggle against denial, depression, and self-pity by making plans and setting goals. Learn something new. Challenge myself. Live BIG.

On the other hand.

I used to think of myself as an intelligent and confident guy in control of my life. I was an attorney and people relied on my advice and judgment to make decisions. I was quiet and laid back, but colleagues and friends listened when I talked. I created poetry, stories and novels. I could dance, juggle, drink until I was drunk, and entertain very young grandchildren with simple magic tricks.

Much of that self-image has been stripped or “shrunk” by PD. When my meds are “off,” ambition, energy, and desire rush away, often in just a few minutes. I realize that in order for me to live BIG I will have to dig deep into whatever remains of my old, pre-PD self. The reality is that there may not be much.

Like the song says:

Feeling alright (oh, no)
I'm not feeling too good myself (oh, no)

Later.

Manuel Ramos