STOCHASTIC

  Aha!! Yet another new word to add to my growing lexicon of heretofore unknown vocabulary. I actually like to come across such new words as it challenges and gives hope. Challenge because new things are harder to absorb as one ages particularly when one is burdened with PD. Additionally, I have always liked to learn new things, to gain knowledge. Today, the opportunity. to feed that “like”, to gain knowledge, is always welcome. Challenging the mind and the body is always a good idea when one has PD.  

When diagnosed with PD it is often a blow that knocks you down, literally and figuratively and does not let you get back up so easily. Your world shatters. One thinks of all the negativity that's been associated with that disease. Merely knowing that it interferes with the working of the cells of your brain is frightening to a degree that one cannot understand unless one is G-d forbid in that situation. That initial reaction upon official diagnosis is actually strange because most people have already known they have been 'gifted' with PD   for many years.

That was the case with me. I have known for decades that I have had PD. However, approaching various doctors with symptoms, with questions, my concerns were brushed off, explained away. Those 'explanations', only added to the confusion and yes, angered me. Brushed off the way as if I did not know my own body. I was told not to diagnose myself, to listen to them because they knew best. Well, they didn't.

That misdiagnosis or non-diagnosis angered me. PD has no cure, but it does have paths to delay the symptoms, to prepare oneself, to be more careful to avoid falls, to 'PD proof' one's house. Most important, to understand what is coming and prepare for it. Arrogance and the ignorance of those who should have known better, and behaved better, delayed all that. Too often women have been pushed aside as apparently incapable of understanding the messages of their own bodies and they have suffered irreversible harm. Yes. there is an element of bitterness here, for in their conceit they violated the Hippocratic Oath wherein they swear to "do no harm" to one in their care.    Thankfully, we found doctors down here who listened, questioned, tested and diagnosed.   

Even as I moved forward to do what I had to do, that anger inside continued to rage. I can see the difference. I see what regular exercise can do. I see how I could have made my life safer. Less eventful. I, my family, my friends could have, would have, had more time to understand what was happening.  They have been wonderful and give me courage and reason to carry on, to keep up the fight. It is a most difficult never-ending fight, a series of battles inevitably leading to a lost war.  

Upon official diagnosis two important thoughts arose. One filled me with guilt. How much better could I have been as a daughter had I understood what was happening to my mother. I could have understood why she fell and how she felt. Her frustration, fears, confusion re her traitor body and understood what was going through her mind, all should and would have been better understood and addressed by me with my own understanding and experiences. With the proper diagnosis. I could have better addressed the issues. Done better. I would have known better. I should have known better. And the guilt lies heavy upon me. To this day and ever onward. I can cry. In fact, I do.

Utmost in my mind was to discover, if I could, whether this Parkinson was of danger to my children, genetic in cause. Or was it stochastic. " there will always be a proportion of people for whom, even with a full understanding, no cause is clear, ... ‘Sometimes it’s just stochastic – a random event that happened that’s bad luck but there’s no obvious cause.’    

In other words, one is **** out of luck. So, we tested. We joined studies. We're told it was not genetic. Then we were told that there were new genes, new testing, new specialists. We have done all that we could, but no definitive answers have been reached - as of yet. We will continue our search for answers. To be informed is a must. 

There are silver linings in this cloud. For one, I have had to reach back deep into my past, into my soul and call upon an inner strength. To reinforce discipline in my life. To institute a rigorous program of physical exercise of challenges and demands. To understand that my newfound hobbies or talents in painting or woodwork, or mixed modalities is not an indulgence nor an aberration, but rather a gift for my brain, from my brain.  

All that is well and good, but the cherry on top or the cherries, are the wonderful gifted caring people otherwise known as therapists.  PT. OT, Speech, whatever the need, they are there. Even simply. to talk with us, to hear our voices, our fears, our dreams, to smile with us as we show the pictures of our kids and grandkids. 

Without their devotion, their care and their patience, a never ending well of encouragement, we would not be where we are today. They read our minds and know when to pay attention to our whining and "I can't do it" attitude and when to push us. To celebrate with us when we do meet that challenge and if not, devise other means so as to avoid a sense of defeat and discouragement.   Always pushing, always encouraging, always there. When we arrive, we are greeted with smiles and we leave with smiles, knowing they will be here with their love, knowledge and encouragement so critical for those with PD.  PAM, my new clinic of less than a year, preceded by a wonderful clinic and staff which closed, has become my home away from home. Most important - they tolerate me so well! These wonderful people are a 'gift that never stops giving".

Bless you. Thank you.