Saturday, June 5, 2010

Parkinson's Disease and Freedom

It is Friday. It is late. I am exhausted from the week of work and other worries. 6 hours sleep last night. Up at 5 AM. No nap today. But I refuse to go to bed. I will not let the fatigue treat me like some whipped puppy being shooed off to my corner to sleep. It is my own little act of rebellion. I sit in front of my computer and read cases recently decided and posted on the British Columbia Supreme Court website. Or I read e-mails, check blogs, or review my daily Google Alerts on recent world developments or news stories related to Parkinson's disease. And, of course, often I write positivelyparkinsons postings. It has become my silent protest against the logical thing to do; get some sleep!

I begin to wonder whether this is some Freudian refusal to "die". However, I have concluded that "staying up late" is defiantly seeking control, pursuing freedom. A friend recently said, with resignation, that he was having trouble coming to grips with the idea that at 50 he can no longer "do it all".  As we age it can feel like our choices become more limited. We do not have the resilience, the reservoir of energy, the enthusiasm or sometimes the audacity to "just do it".

My Parkinson's disease constantly reminds me that I am losing control of my body. And age itself slices like a scalpel into the sharpness of my memory, sometimes leaving me without the right word, someone's name or a clear recollection of an important event. The younger, tech-savvy generation rises like a tidal wave, threatening to overwhelm my ability to remain on the cutting edge of developments in my profession. At 57, am I losing control of my life? "Freedom 55" must be a cruel joke, a myth perpetrated by investment dealers and "wealth managers"?

Ironically, this reminds me of my 18-month-old grandson and his love of stairs and keys. Until recently fear kept PJ from even attempting to crawl up the curved staircase in the entryway of our home. But, inevitably, like all helpless babies who are growing into their 2 year old independence, he has began to assert his need for freedom to make his own choices. He giggles excitedly as he stretches his short legs up to the next riser, clinging to the spindles with one hand while he turns, beaming, to watch me follow a few steps below. He will spend several more decades in this process of asserting himself, and inserting himself into the world around him, making choices, taking control, and experiencing freedom.

Anyone experiencing the progression of PD will feel a commensurately deepening sense of loss. But, like any loss, be it the inability to hold a teacup still enough to raise to your lips, having your driver’s license revoked or being unable to move due to "freezing", the loss need not define us.

I may lose my self-importance/pride, some of my self-image/vanity, and even elements of my self-worth/misplaced identity to the extent it is tied to my perceived ability to control the world around me. But I cannot and will not allow any disease, misfortune, event or even person to take away my determination to be the person God made me, with an irrepressible ability and need to make choices. For as Voltaire, the French philosopher, said, "Man is free at the moment he wishes to be.” We are only as free as we choose.

As for me, as irresponsible as it may sound, I choose to prop my weary eyelids open, shake my already shaking fist in the face of this disease, and stay up ridiculously late on Friday night.


  1. Way to go! I share your frustration as I too am 57 and was diagnosed 4yrs ago. I am fortunate as I am one of the small percentage who do not shake visibly. My biggest frustration is 'mislaying' words and objects! Fight the good fight.

    Cape Town
    South Africa

  2. Try to sleep and let your brain regenerate as much dopamine as it can. John just slept for 12 straight hours after scraping old paint off our house for 6 hours. I don't know how he can sleep so long, but his symptoms have not progressed much in 3 years. I know that exercise and lifting weights helps the muscle cells regenerate.

    All I know is that John sleeps well, eats well, and exercises frequently.

    Keep well and try to sleep.