Reflections on D-Day

D-day (diagnosis day)... a day that will live in infamy.

Knew it was coming, but it was one nasty rollercoaster. To date, there is no accurate trustworthy test for PD - only sure way to tell is to slice your brain open and take a good look-see at the pigmentation of a brain region dangerously close to your brain stem - short of that diagnosis is reached, essentially, by testing for and ruling out every other possible malady that could cause symptoms. Took over two years in my case, which is not unusual.

Take enough tests and, sure 'nuff, you're 'gonna find something wrong with you. In my case, high levels of arsenic showed up on tests for heavy metals (!) - must be that nice glass of hot tea my wife brings me each and every night. Cut back on fish and managed to get that back in the pocket (...fun test...24 hour urine sample...every drop for one day goes into a special vat).

MRIs are taken to rule out brain lesions. My internist suggested taking an MRI of the neck area (cervical spine)....I was perversely happy to hear that it showed a narrowing on the spinal column (cervical spinal stenos is...) which he thought may be the cause of symptoms. So through the woods and over the dale its off to the neurosurgeon I go...

I felt a tremendous sense of relief, thinking, for a couple of months, that I dodged the shaky bullet with my name engraved - but, on examination, the neurosurgeon did not believe that the spinal compression was significant enough to be causative of the symptoms. Not what I was hoping to hear :( and back to the neurologist I go....

Neurologist concurred - and after 2 years of testing concluded that I indeed was displaying idiopathic Parkinson's. Excused himself for a moment, came back in with a small shmorgasboard of medical samples of Mirapex, Azilect and a couple of other things and more or less said try what you like and let me know if anything works for you.

Upon arriving home, I took out the shiny starter kit of Mirapex....showed a happy smiling grey haired couple - you could see that the wife was admiring her Parkinson's afflicted hubby - you could almost read the invisible text bubble above her head (...gosh hunny, it's ok if you drool and need me to change you, but you're always gonna be one hot studmuffin to me!).
I examined my hands....they smelled of desinex from the last change to my 18 month old little girl....too soon for this stuff, 'freakin way too soon....

Wrong ended therapy.....

These days I find myself checking in once a week or so with the good people in the YOPA chat room(Young Onset Parkinson's Associan...yopa.org / highly recommended) - 'mentioned in passing that the PD symptoms had really been kicking my butt the past week. Everyone concurred - seems PD was kicking everyones butt.....and then it dawned on me: medician approaches to management of this beast have been ass-backwards - what we need is not more pharmacological hooch to futz with delicate and poorly understood brain chemistry -

...simply stronger butts!

Dag-nabbed gimpy arm....

For a while now, I've found myself somewhat p.o.d and angry with my arm, which has gone gradually gimpy and no longer is that reliable extension of myself it once was. Sober reflection informs me of the stupidity of feeling that way....sort of like if someone hits you with a stick you go and punch the stick. The pinky, the hand, the arm are not the source of the disease ....

So, now I'm just pissed at my brain - fed it right all these years, kept it warm and cozy in my cranium and this is the thanks I get.....sheeesh. This doesn't make much better sense, but its closer...

So - what has caused my braincells to pack their tiny Gucci bags and rush the checkout counter at Hotel Head? Kabbalistic wisdom, karmic processes inform us that physical disease processes are manifestations of things we've put into play through our decisions, actions, decisions not to act....point's back at yourself at some level, but just what/where the message is still eludes me.

In the meantime, there's my stupid brain and 'freakin arm to keep me company.....

Shots over the bow / first symptoms...

quivering pinky

fresh-caught fish spasms and gasps

PDs cold first kiss . . .

Just when does something - a process - actually begin? When you eat an apple at what point does apple stop being apple and start being you? And when a chronic disease process eats you when do you stop being you and start becoming a manifestation of the process?

Texts on PD state that by the time any symptoms become noticable a huge portion - ~ 80% or thereabouts, of the dopamine producing cells in the substancia nigra portion of the brain have packed their bags and checked out - so in clinical terms, this disease process is a real futher-mucker for most.

My first clue that something was rotten in my inner Denmark was a very tentative, almost shy pinky tremor on the left hand. As a keyboard musician I probably took note of this earlier than most, hyper aware of sensation and feedback from the perspective of a musicians hand. Thought not-too-much of it for a while....

After a few months it became more regularly present, usually only when at the keyboard. Made mention of it at a regular physical - couldn't produce the tremor on demand and, at that initial point, we both dismissed it as nothing of concern. But next day, there was my little friend, back in the pinky happily waving and dancing in the wind..... the battle was on

Call me Ishmael....

You can call me Modem....you can call me Dave. Neither is my true and legal name, rather an old online moniker taken from days long ago when I had worked selling modems wholesaleback in the days when 9600's baud puppies were hot stuff. Always thought that 'ModemDavid' could be a great name for discount electronics chain, a'la 'Crazy Eddie'.... however, the new generation knows nothing of the modulator / demodulators of yore.

Trying my first attempt at blogging to chronicle and share observations and experiences stimulated by - but not limited to - my recent experience of having been diagnosed with Parkinson's disease. Having been diagnosed last December after a slow onset of symptoms stretching back several years has been, at least, a thought-provoking experience. Haiku helps....so does a good glass of wine, or clarifying thoughts on paper. Some of these thoughts I'll post here to share with you ...'guess you're on your own for the wine \___/!