"ADVERSITY HAPPENS"

    My thoughts after reading the New Yorker's article on Parkinson's Disease, April 28, 2014,  "Have You lost Your Mind?" ---

Apparently, many people who have PD are ashamed and/or embarrassed about the diagnosis.   Do they see it as a personal failure?   Or, maybe a defect?

My personal attitude is that 

1) it's not a personal failure - because, as far as I know, I had nothing to do with acquiring it,

2) and yes, it's a defect.  So What?  Does that make me "bad" or "undesirable"?     No way!

I've had a lot of personal success over the past 60 years, creating a strong self-image  (good news) - but, also strong enough to foster an un-healthy level of pride and independence (bad news -  too much of anything can become a negative, IMHO.)

Actually, I want people to know that I have PD.  I want people to know 'why' I look and respond the way I do.  Most of the time I'm smiling inside - something  desperately lacking in my demeanor.  (I've tried to notify my face, but unfortunately it doesn't respond to my mental commands  very well.) 

Because I had DBS surgery, My Parkinson's tremor is gone -- however, my speech has been extremely impacted.  I recently made a calling card to help break the ice with strangers:  

Today, at age 63, Parkinson's is not a 'career buster' for me, but rather a journey to a new place - mentally, physically, emotionally and spiritually. 

Fortunately, my diagnosis came at a time in my life when my vocation was morphing into a technological rat race.  I had been pleased with my accomplishments by age 55, but not necessarily excited about chasing the learning curve of the tech/video future.    (Maybe that apathy was a non-motor symptom of PD -- undetected at the time)   I was ready for a change - but not necessarily Parkinson's

Now, mind you, I'm not a stranger to change - having lived in numerous locations from:

               Philadelphia to Anchorage,   New York City to Detroit,

               North Hollywood to Modesto,  Sacramento and Yuba City, CA.  

Currently residing in North San Diego County, in retirement, I look back at the many hats I've worn since the 1960's: 

o   professional musician, magician/entertainer;  laborer/carpenter on the Alaska Pipeline;

o   construction superintendant;  racquetball and fitness club manager/owner; 

o   roller skating rink owner/operator;  Independent Business Owner with Amway Global; 

o   professional videographer  and audiovisual contractor,  producer/director. 

To be certain, I've had a very full life and my bucket list is small.  I'm sure there will be some surprises yet to come, but I have learned that  adversity happens.  How we respond to adversity determines our well-being in this life...and potentially, it determines our status in the next life to come. 

I don't like Parkinson's Disease.   It has grossly altered the dynamics of our lives - Beckie, our children and grandkids have been negatively impacted.  It has forced us into a place of pain and emotional trauma - a place, in some small way reminiscent of the trouble encountered by the ancient patriarch, JOB...a place of psychological and philosophical drama...a place,  however, where I am learning about faith and hope.  A place  where I'm connecting with my Creator -

A place where the 'glass is half full' --- always.

D'Nile

Today I had some lunch at Souplantation after dropping Beckie off at work. Halfway through my meal, an older couple entered and proceeded to sit in the booth across from where I was sitting.  The lady was "well-kept" - with meticulous makeup and clothing, poise and grace (like someone you'd see at South Coast Plaza in Newport Beach).

The man was well dressed - looking like he was in his early eighties - but immediately it was obvious something was amiss:  the tell-tale shuffling gait and 'freezing' as he got to the table.  Then the awkward process of trying to slide into the booth (which he navigated by himself while the woman went to get drinks).  Once he was seated, I looked for any kind of tremor, but it was minimal. 

The woman returned and they began eating.  I  watched painfully as he tried to eat his salad with a fork (remembering how big a challenge that was for me before DBS surgery).

His face had the typical Parkinson's mask appearance and he didn't talk...except to blurt out "I have to go to the bathroom."  At which point the lady got up to assist him, reaching out her hand to try to pull him up to a standing position, while reaching down with her other hand to try to swing his legs around so he could stand up.  Watching him struggle to get out of that booth was difficult, to say the least.  (Too many memories of my own)

The lady ( I assumed she was his wife) graciously and patiently walked him arm in arm to the restroom - at which point I got up from my seat and followed at a distance, finally meeting up with her at the pasta bar.  As I approached, I quietly asked, "How long has your husband had Parkinsons's?"

To my utter amazement, she replied, "Oh, he doesn't have Parkinson's.  He has Dementia and Alzheimers!  He's 96 years old!    To which I responded with  "I've had Parkinson's for 7 years, but I had brain surgery to minimize the tremor."

She replied, "Our neighbor had Parkinson's for 17 years.  He passed away this past year - he couldn't swallow anymore so they put a tube into his stomach." 

I tried to keep a pleasant look on my face as I remembered my friend, Bill, in the last year of his battle with ALS (Lou Gehrig's Disease), trying to sustain himself with that G-tube protruding from his tummy.  We exchanged niceties for a moment and then she excused herself saying,  "I have to keep a close eye on him."  That was the extent of our conversation.

That's not the first time I have seen someone with obvious symptoms of Parkinson's Disease who was in denial about it.  Maybe they think because there is no tremor, that  it's just old age.  I don't know.    But it astounds me that someone close to them doesn't drop a hint!  That man had Parkinson's...shuffling, freezing upon trying to navigate narrow spaces, facial muscle droop, no strength in the core muscles, very slow movements, etc., etc.

He is probably too old at 96 to be a candidate for DBS,  but there is no doubt he could benefit by taking carbidopa/levodopa medication for Parkinson's.  But then, I am no doctor.  I am however, in the center of my own battle with continuing debilitating symptoms, and I know one when I see one.

What's the moral of the story?

Never forget that D'Nile is a river in Egypt...and its far, far away!

Denial, on the other hand, is sometimes too close to home.

Kenny Wayne