Guess Genes

My children and grandson do not have my genes.

Renae and I have the miraculous privilege of having adopted 3 children within weeks of their births. Today that would be a rarity indeed. And while they each may bear the mysterious genetic fingerprints of their unknown birth parents, the specter of Parkinson's is not embedded in their psyche or their physiology, as it is mine.

Why did I "get" Parkinson’s Disease? Anyone in similar circumstances would ask the same nagging question. “Why me?” It is one of the most common cries of human existence and experience. This are really several questions in one, each rooted in a different dimension of human curiosity: medical science, psychology and spiritual. As I think about it, maybe that two-word sentence is really the existentially defining question for us all. However, lest this humble blog become a treatise of too significant scope, it is only the first one that will concern me in this posting.

Of course, if those pathologists who study this fairly common disease (6 – 8 million patients worldwide, approx. 1 in 500) actually knew the answer to this haunting question, we would expect that the cure would be inevitable and imminent. And millions of us who live with PD would be celebrating like never before. But, like so many diseases, the answer seems to be complex. It is called “idiopathic”, which I might add is not the merger of ‘idiot’ and ‘pathetic’. It is the medical profession’s word for “cause unknown”. Despite having been identified by Dr. James Parkinson nearly a century ago (1817), only recently have significant strides been taken in the scientific world of “why”.

It appears that the root cause of PD is most likely an enigmatic equation of genetic predisposition/mutation and environmental event/exposure. At least in my case these two factors seem to collide like two meteors bearing my name, with the fallout being my own personal brand of PD. It would seem that there is some genetic defect that has found its way down the circuitous chain of my father’s ancestry, although this is speculation at best. On top of that, I grew up (to extent I have done so) in the orchards of the Coldstream Valley, outside Vernon, BC, where in my childhood was spent playing among the pesticides that were sprayed naively into the Spring air for all to inhale.

PD in my case seems to be like lung cancer to a person prewired to have a special sensitivity to second hand smoke. It resulted from the body’s genetic predisposition to easy absorption of toxins. At least that is my best guess.

So what if you are the child of a PD person? Sometimes it must feel like being tied to the railroad tracks with the train just round the corner.

First, as I suggested previously in my Grappling With The Ghost of 82 posting, you can’t dwell on the future or it will traumatize you. Second, the odds are still stacked heavily against hearing a verdict of ‘positively Parkinson’s’. Even if the genetic and environmental stars align, chances are you will not have PD. And thirdly, even if the PD diagnosis comes, you can live with this challenge, like so many others do. It could be worse, right? We can accept without fear the perils that may present themselves in the days or years ahead, and still live fully productive and even joyful lives. Is there a better alternative?

Below is a 4 generations photo: my father-in-law, Louie, my son, Adam, and me with my grandson, Patrick.

In the Beginning

Parkinson's disease (PD) starts out as innocently as a small outbreak of acne. It is annoying at first, but generally goes unnoticed. A few people seem to have eyes that see the rather unappealing flaws, but most don't much pay attention. But week after week, month after month, it gets worse. More people look at you a little too long with that quizzical expression (you know, the one that says, "There is something wrong with this picture. Now what is it?"). You are increasingly bothered by this "condition" that does not seem to go away. At some point you see the doctor. You expect the dismissive, "take a few of these pills once a day for the next two weeks and that nasty problem will disappear". Instead, after a few rather innocuous tests the unsmiling man in the white smock tells you the news that will change your views of your genetic heritage, upbringing, work, family, and/or even God (there has to be something or someone to blame). In short, your whole worldview is shaken. Most of all, the diagnosis immediately distorts your sense of the future.

There is no doubt after a second or third opinion, it's POSITIVELY PARKINSON'S. This is a life-altering, "incurable", degenerative and ultimately debilitating disease. This dying of dopamine in the brain, and its consequences, begin to define you. A thousand times a day your mind repeats mournfully, "I have Parkinson"s Disease."

The good news (of which there is precious little) is that you are unlikely to die from PD. The bad news is that you must learn to live with its greedy encroachment on "normal" living. And you have no idea how to do that!

PD is not a disease you can hide for long, although one becomes very adept at doing so (sitting on my jumpy right hand is my personal favourite). It is not a disease that progresses or evidences itself predictably, even day-to-day. It will certainly humble and frustrate you as it progressively conquers your limbs one by one, but no one will predict exactly when or how . Its symptoms might be 'treatable' by a plethora of pills, but at some point the adverse affects of the meds may be worse than the PD itself. There may be pain or not. Tremors or none. Stiffness might convert your face to an unblinking, expressionless mask and your legs to planted stumps. Depression, insomnia, loss of smell, and/or fatigue may invade your experience. The picture is not pretty.

Writing a blog focuses the mind. Writing one about living with a disease that has the disturbing ability to incessantly remind you of its unwanted presence is like looking through a microscope. It can be a frightening picture; like a horror movie with a progressively more scary storyline. No happy ending!

But must those of us contending with PD be permanently relegated to the ranks of those pitied by others (and sometimes ourselves)? I say "No!" After all, "normal" really is just a setting on a dryer. There is so much we can do. It was my 21 year old daughter who came up with the name "Positively Parkinson's" as we drove together from the Seattle Airport to our home in Langley British Columbia and talked about this risky business of blogging. I told her I wanted to start a blog to share words of encouragement with others dealing with PD, and those who care for or about them. The name was perfect.

So here it is, the beginning. I intend to post entries as often as my schedule allows. I invite feedback and comment; good, bad or ugly, I will try not to take it personally.. I will share stories and ideas (and I invite yours).

My hope and prayer is that this modest and personal attempt at sharing my PD journey and exploring ideas of how to live positively with it will somehow encourage others facing the often overwhelming and always uphill uncertainty of life with PD. We can be "Positively Parkinson's"!