From One Perspective

by Christine Hall

 “You can observe a lot by watching.”... Yogi Berra

 

As I sit here in front of my computer awaiting inspiration, my mind drifts, not really focusing on any one thing, but hovering over an umbrella of thoughts. It's pleasant letting a busy brain relax and float around in a cloudy haze. It's always a wonder to me that the brain doesn’t seem to yell out for rest as often as our bodies. It seems to have such an amazing and seemingly endless capacity to absorb and store information without exploding.                    

 I don’t often let my mind wander too far these days for fear that it might enjoy it too much in never-never land and not return. My brain and I enjoy a somewhat tenuous relationship now, not as sure of each other as we once were.  More than anything else that comes with Parkinson’s, I fear the deterioration of mind. The physical stuff is disabling, painful, annoying and tiresome.  But the brain stuff – well, that is an entirely different matter- no black and white, just issues (and tissues) of grey. Just thinking about it gives me shivers (or maybe it’s just tremors) but at the same time I just can’t help mentally going there from time to time. On those days that there is a little fuzziness to my thinking, I begin to fear that the decay has begun.  Every time I mislay or forget something I wonder whether this is the “onset”.    Sometimes I am out in the car and just momentarily I can’t remember where I am supposed to be going. Those are likely pretty common occurrences, people laugh about them.  But there is also a scary aspect.  The movie “A Beautiful Mind” impressed me with its demonstration of the very fine line that exists between what we consider eccentricity and madness.  I wondered how you know that you’ve crossed it. Perhaps the answer lies in whether or not you are able to ask the question.

We know that twenty to twenty-five percent of people with Parkinson’s will develop dementia in later stages of the disease. But there is no way of determining how many of us suffer from lesser versions of impaired cognitive or behavioural functioning at earlier stages, mainly because psychological testing is not a routine event in most of our lives (fortunately). We have to rely on anecdotal evidence from those around us, and who is ever going to tell a loved one that their brain seems a little off?  Many of us seem to be a little “nuts” from time to time – overly sensitive, paranoid, anxiety ridden, isolating or just plain “off the wall”. Is that a normal kind of mid-life crazy or is it due to PD?  No one really knows. I have observed hospital patients with progressive neurological conditions that affect the mind and behaviour and many do not seem to have an awareness of their mental status –most of the time.  Once in a while however you see a glimmer of reality shadow their faces.  I have both an aversion to and a curiosity about these aspects of neurological disease. It stands to reason that the balance of every area of the brain will be affected by these progressive conditions.  I want to be prepared for all eventualities…..even insanity.

So, how does one deal with the potential threat of mental oblivion? Most of us can’t and don’t think about it much, forcing it onto a back burner of the mind.  Periodically though, it boils up and has to be addressed. These are the times that it becomes very real and seems to loom large over the present. There are no self-help manuals on the topic and it is not a popular subject for casual conversation, even with our closest family.  And don’t even dream of conducting Internet searches about the signs of cognitive deterioration or dementia……unless you enjoy scaring yourself silly. In the end most of us engage in solitary thought or tentatively share our fears with each other. After all, you are really talking about the demise of your very essence. Not a comfortable spot to be.  What if it happens slowly and you don’t notice? What if it happens quickly and you do notice? What if you need care? What if you become an embarrassment to yourself and family?  What if…what if…what if?  I guess it’s not too surprising that it is difficult to get a conversation going about such topics.  But, along with these anxieties comes the fear that no one will know what your choices would be should the worst-case scenario occur.  There is this nagging need to let someone know, which is really not logical, since should it happen, you likely wouldn’t care anyway. But you hope someone is listening when you tell them what you would want to happen if you became incapacitated. I don’t know why it should matter but it does.  We need to be able to talk about it.

You see, I let my mind drift for a moment and look where it went!  I have pulled it back into the here and now and can’t write any more about the possibility of mental deterioration.  The future is simmering on the back burner again – until next time.