ModemDavids Parkinson Page

Close Encounters of the Dsyphagic Kikng

2011-02-27T21:15:00.000-08:00

Parkinson ’s disease presents but two challenges –

Moving

Standing still…

So, it’s been awhile between posts …. Not much to say, after a while. But it’s definitely gotten to be a harder slog, what between the constant tremor, distonia of the foot, some wicked swallowing problems (dysphagia, for you terminology hounds) - almost done in by inhaling a milky shard of shredded wheat on Monday, only to face the challenge of disgorging a malevolent tortalinni from my airpipe – prevailed both times only to go through a hellish failed attempt to hack out a small morsel of yummy watermelon before it took up residence in my left lung. Need now to be onguard for signs of aspirationial –‘fucking pnumonia, or at least, the boogie woogie flu…..man. This is not the guy I planned to be, strictly old man in nursing home stuff – and for a spry bastard still several months ahead a fifty second birthday. Anyway, hope the offending melon did not contain any fertile seeds, otherwise I may need to appropriate Herbie Hancock’s ‘Watermelon Man’ as my new theme song….

Swimming Upstream

2010-01-23T20:14:00.000-08:00

Bucking a shitload of inertia I have finally begun to drag my sorry behind on a regular basis back to the gym – having now passed the half-century mark it’s finally dawned on me that I’m no longer a teenager and will need to keep as many of the original parts in servicable condition for a good while longer. So, decked out in sweatpants and muckalucks I sidle up to a well-worn elipitical training machene, punch up a 30 minute workout and start a-stepping.

Parkinson’s, being the full body futhermucker that it is, has taken the glide out of my stride, the pep out of my step, if the glove don’t fit you must aquit….(sorry, channeling Johnny Cochran there for a moment)…anyway, it’s done a number on my left side and doing the aerobics and weights has gotten tougher.

Inevitably, after 5 or 10 minutes on an aerobic machene I’ll hit a wall where my leg does not want to move, assymettrical large muscle fatigue – and yet, that is the precise moment that I must transcend and push beyond – I know that I can’t but I know that I must and today, as in most days, claim the small victory of making it to 30 minutes or more. I’m reminded of earlier martial arts training where the instructor would mercilessly push us to do endless repetative punches, kicks and blocks. Asked what was the point of pushing so far beyond the threshold of ability he said wisely “exactly the point…..once you go beyond the point where you can do it and can no longer ….yet you insist on continuing you access your goal which is: transcending the limitations of your strength and physical body to strengthen and access the unlimited potential of your will and intention.”

Clearly, in approaching my larger goals of maintaining the best possible functionality and level of health in the face of a systemic challenge, pushing beyond the normative level of my physical abilities is called for – and work and right action towards engaging my will and intention must be engaged. Swimming upstream, but still swimming ….good as it gets, for now.

HOPELESS ROMANTIC

2009-11-14T05:31:00.000-08:00

Entry from the “Modern Translation Guide To Singles Pages Language”

HOPELESS ROMANTIC – has both herpes and aids.

No, no – its not that for me, and, no, ModemDavid remains a faithful married guy, not out there amongst the mingling singles who stare blankly from Ray Bans, thin rays of mingled hope & desire eminating from tired eyes foggy with cheap wine and cheese breath, still seeking that first miraculous locking of eyes with‘the one’ who at any moment may sashay through the doorway if I can only continue to look cool and detatched for maybe one drink more (yeah…right) And, no thank you, I have not gotten any social diseases, unless that mildly inflamed hickey I got from Holly Weiner at 17 counts.

Yet how now at the relatively not ancient age of 50 do I euphemistically describe myself as anthing better, more elevated than simply the cumulative sum of my diseases? Another round of medical visits, more probing, imaging studies (endoscopy, to be precise – which as Los Angeles is a union town involves lowering not only a camera but, apparently, a 3 man IATSE film crew down your neck – or so it felt in recovery) – all of this to reveal the happy arrival of a brand new baby diagnosis – little Moderate to Severe Reflux Disease to add to the list that have truly made 50 the new 70.

So whats on my list now:

Idiopathic Parkinsons

Peridontal Disease,

Myopia

Frozen Sholder,\

Mild to Moderate Spinal Stenosis

Chronic Inflammation of Juvinile Hickey Syndrome ( CIJHS)

I’m one fucked up dude, dude…….and yet

If I am not my name, what am I? If the essential ‘I’ remains more than the sum of my diagnosis, than how do I operate, how do I access the premordial ‘ I’ that animates me from the motionless steady state deeper reality in which the slow but insistant ravages of my multiplicity of disease processes are neutered, rendered harmless, baying perhaps like wolves or hyenas locked safely outside, but firmly enjoined to back off, not interfere or do anthing more than minamaly disrupt the trajectory of my days across the span of a lifetime. Answer me this, o wise one, and I will gladly buy you a beer.

So, like the ‘hopeless romatic’ I still seek retain a link to something optomistic, planning and hopeful looking across the Great Plains of my 50s and beyond hoping to lock eyes with a future that holds something more bearable, duralble and fulfilling than the cold and clear trajectory of multiple diagnosis.

Go figure,

Modemdavid

Dumpster Satori

2009-09-06T06:09:00.000-07:00

Power sander hums

Perplexing flies in dumpster

“Hey… what’s this buzz?”

Well, after the final indignation with my sweetie of having a valet from a fancy restaurant outright refuse to park my monkeyshit brown Mitsubishi on purely aesthetic grounds, I’ve decided to take matters into my own hands – literally – and, armed only with a small power sander, a bit of moxie and elbow grease, head out into the ally behind our l.A. townhome with a facemask, sanding pads and a little A.M. radio tuned to the local Cumbia station. This is what Labor day is all about, I think to myself as I settle into the rhythmic grind of stripping the defective withering clearcoat.

Though I’ve lived here for almost a decade, till today my relation with the ally has been only a transient, passing thing – pass through to drop off a big bag of poo and diapers from the little ones, an occasional quick stroll to the main street to save a few steps….this and nothing more.

Yet, spend a full day in the ally and it reveals a life of its own, patterns repeating yet always theme and variations. Bottle People living on a recycled economy, the occasional cholo wandering through his turf, wondering, ‘so, is this all there is?’ Unlike when passing through as a homeowner, where eye contact is rarely made here, a quick look, an acknowledging glance

Indicating either peaceful coexistence or mutually assured destruction

(‘hey—you fuck with me and I’ll kill you’ and

“hey-you fuck with ME and I’ll kill YOU! Ok good…we’re friends!!!) –

imagine, a working microcosm of cold war US/Soviet relations just outside your doorstep.

Most surprising, though, was my interaction with the natural world. The prolonged low buzzing drone of the power sander was enough to draw many curious onlookers, the type with compound eyes – flies, disturbed from their reveries and bacchanalian refuse orgies, disturbed and – I know, I flatter myself – just maybe attracted by the powerful manly drone of my black and decker ‘MiniMouse’ sander – flies come by to check me out and do the hang where the action is. Not to be outdone, a mammoth bumble bee or two join. Everyone is having a blast as I cut deeper into the evaporating color of the Mitsubishi only to find that -- hey, waddyaknow -- the base metal you would expect to see at the end of the road was only masonite with a thin veneer of aluminum foil…..now I know why it was cheaper than the camry!

So, its now quite a scene, the sander sings sweetly while the flies and bumblebees sway gently to the distorted Cumbias and Cha-Cha-Chas blaring from my radio. All good until LAPD show up, no doubt summoned by some pesky neighbor no doubt wondering why an unlicenced Auto repainting shop was operating within earshot.

And so the day ends, an order to appear in court to answer charges of illegal operation of an environmentally impacting business and disturbing the piece my only souvenier - and, just before I sink into the enuie of legal worries to add to the myriad of others that have found me in my 5oth year a trio of dumpster flies, having followed my back from the ally no doubt, zip by me, back and again in perfect time to the last cumbia of the day still blaring from the radio.

Go figure......

Freaky Teethy Things....

2009-07-25T06:46:00.000-07:00

The Tooth, The Whole Tooth & Nothing but the Tooth….

So, I achieved a long-term life goal – made it to the ripe age of 50 with every one of my teeth still in my head. It’s no secret that Modem is a man with deep pockets…..deep pockets not of the sought-after financial type but rather of the periodontal persuasion. So, here I am, ripe with deep pockets…..sheesh.

And, after many years of near-heroic effort to save one of my more affected teeth, the day of reckoning came and the hour came near when molar number 29 had to go.

The thought of losing a tooth was disturbing to me – to see a fixed and seemingly permanent part of your physical self as impermanent, transient and fleeting thing gives a good elbow to the gut of that largely sleeping part of yourself that, despite all it sees in the world without and the world within – in spite of it all – persists in the dream of personal exceptionality to mortality. If you ever really want to bug that bastard, go ahead, pull a few teeth –

The tooth itself was quite a piece of work – according to the good doctor it was a dental freak of nature, a molar-on-the-edge with a rarely seen extra root shaped roughly in the shape of a male phallus (you can call me ‘dick-head’), a genetic freak apparently at this moment winging its way to a hallowed acrylic display case in the Museum of Dental Oddities. I wish it only the best of happiness in its new life. Apparently, its doing quite well without me, haven taken up with some busty dental hygienist with a thing for freaky teethy things, or so I read on its twitter posting. ‘That’s my boy…J

So its almost a week after losing the little bastard….and, frankly, good riddance. According to the doctor, the permanent state of infection was starting to impact the jaw bone and left untreated could have been much, much worse, more loss of bone, etc. The only available option might then have been the much ballyhooed but untested full “mouth transplant” – and that I’m not ready for, unless maybe I can get myself the strong lower jaw of a CharlesBronson, a George C. Scott, or a Tosiro Mifune. On my budget lucky if I could afford a used Alfred E. Newman, fucked up gapped teeth and all.

Well, that’ll be about all for now. Damn, I’m hungry….’gotta go and gum a donut.

Go figure,

ModemDavid

El NeuroMigre

2008-11-22T06:37:00.000-08:00

Back after another followup at the neurologist. Interesting conversation – apparently, the problem is all in my head.

But, there too, may lay the solution.

How convenient.

Research points to the presence of dormant stem cells already there in your own brain – already there – no need to conduct some surreptitious cell harvesting from the unformed brain of a preborn spawn of some frantic juvenile coupling –

Though I do remember those being ‘kinda fun – the stem cells, the are ALREADY THERE - inside your own head, an unused bench of new hitters for your cognitive world series, the one that really matters – the one that is you.

Imagine – there they are, all lined up on the bench in crisp outfits, telling off color jokes, their witty urban banter punctuated only by the occasion emission of a spent chaw of chewing tobacco, All set ! So what the is the problem???

They’re asleepL

Dormant…

Unconscious, unknowing.

Totally and blissfully unaware

So, my neurologist tells me, the engineering task from the pharmacological perspective is to first wake up all the little bastards and then direct them to migrate to precisely the right location in your ‘wittle head, link dendrites and fill the gap of their dead and dying Brothers of the Dopamine order, to stand in the breech singing kumbaya and forever cure that what ‘ails ye, afflicted readers of this blog.

Piece of cake, no? Take two aspirins, eye of newt and call me in the morning….

Clearly not an easy task – but I felt momentarily positive thinking that maybe a solutions does lurk near. Migrating stem cells – why didn’t I think of that?

Then I did think of that and here is what I think I thought:

If it were me, if I were one of those neuromigrants, and you woke me up – well, first of all, then I’d be pissed….no-one likes being woken up, right? And then, after waking me (remember, I’m pissed) – now what do you do? Hand me marching orders to assemble somewhere within the Substancia Nigra, not the best neighborhood by far, hell, I’ve never been there, and while the march for racial equality may have indeed transcended its challenge with the election of Obama in macro-world, whose to say that my sleepy Grey – matter brothers would ever willingly move to a place characterized by all the Dark Matter of the substancia nigra –never underestimate the predjudice of of pigmentation.

No – as a young, recently awoken plurapotent stemcell no way in hell that I’m about to willingly hitch my wagon to a dying brain. Hell no, I don’t want to be an enable of some near-50 mid career frustrated- high school band director- who left New York to find fame and fortune in Hollywood as a wanna-be film composer, who went from wanna be to has been with out having been there.

Just because he HAD potential and squandered it, now you ‘tellin me that me, with my infinite stem cell superpowers I have to go and shoot my wad on some bum like that? You talking to me? You TALKING TO ME?

Great…. now you’ve gone and radicalized the little bastards…

Desperate times call for desperative measures. Woken and ordered to do the

“Man’s” work – with no say in the matter – its entirely reasonable to assume that a critical mass of the newly politicized neuroMigre would look for ways out….hop on the bus, Gus,..make a new plan, stan…..Hitch a ride on the gust of a sneeze, sling down a thread of mucus hanging from your nose, swinging like a little Tarzan in hopes of somehow finding the way into the head of an up and coming basketball star, supermodel or at least that of a musician who knows better than to do clubdates as a sideman……

Migrating Stem Cells – wake ‘em up, tell em where to go, what to do, and don’ talk back or ask too many question. So what do you make of the odds?

Go figure,

Modemdavid

Sparring with the Muse....

2008-07-20T12:01:00.000-07:00

Before being hit with the reality of PD, as a keyboard musician I would from time to time amuse myself with the morose projection "what would happen if I somehow lost use of my hands" - one of the most terribilest thoughts there is to a working musician - and for the bulk of my teens through early 40's this is what I was -
now, confronting the reality of the gradual but insistent loss of the fine motor control integral to piano technique I find myself having to deal with this experience, not in a traumatic way, i.e. losing your hands in an unfortunate accident, but rather with a torturously slow attrition of those abilities which I've taken for granted for so long.

So it was this week that I approached two music events - the first, a rehearsal session with some top L.A. veteren musicians - these are the guys that play behind all the big name artists when passing through town, the musicals at the Pantages, the Hollywood Award Shows, all the way up to major film dates and all the way down to the monkeysuit jobs at Bar Mitzvahs, Weddings and corporate events of every ilk.

Walking into the session with my gimply left hand was a little disconcerting, and I started out without the quiet assumed conidence in my competence that always till recently accompanied me to the stage - I may not be able to dribble a basketball for shit, but I can always kick musical butt on the keys - and it was a bit of a hard start, but as we got into the second number and on, it was good to start to feel the left hand join in the dance, running on fumes maybe, but still running. From a playing perspective, I've always been more of an 'architectural' player than a virtuoso - i.e., more inclined, attuned to 'surgically' playing the right note, harmony or punctuation at the right time to support the music rather than playing rapid-fire improvisations - and, for where I am now and may be going, this approach serves me well.

I am always impressed playing with senior musicians - guys in their 60s to even into the 90s' - by how undiminished and strong their music making can be - and, looked forward to maybe one day joining the club of back-slapping wizened old geezers trading stories between numbers - I dunno, hard to say where I'll be in 10,20 years even without the PD issues - still, it felt good to get out there and swim with the fishes again for a bit.

Played a second, paying job, solo piano - this started out easier and ended harder.....by the third hour the control and manual dexterity in my left hand had almost completely departed - walking bass lines out of the question, barely able to drop my fingers on the keys save for dropping the entire arm .....got through it but with a considerable degree of difficultly at the end.

No great cathartic thought this time around.....just observing the dance.

Haiku for Waterbugs

2008-07-13T12:02:00.000-07:00

Wise old Waterbug!
Cowers from hot yellow river
Of first morning piss...

Authors note: a true haiku, a transient relationship captured in literary amber....and for the
Stalevo users among you, you know from bright yellow piss, though you shouldn't ought to know from....
anyway, was captivated by the mini-drama played out in the rim of the toilet between my 6 legged friend and his artful dodging of a toxic niagra falls.....

The Secret Life of Modem Mitty...the Applesause Files

2008-06-24T16:45:00.000-07:00

“Come with me, sit” said the lithe young woman as she guided me into the small sunlit private room.

Smiling wryly, she sat directly in front of me and encouraged me to relax and prepare for what was to come. “Now look at me…I want to really see your face” Our eyes lock as the sunlit grey perfectly shaped orbs of her pupils peered deeply into my tired brown peepers. “Good, yes, that's very good, now – here’s where it can get a little strange, ready?”

“Ready” I say, still tense and apprehensive but calmed some by her warm hand pressed on my knee.

“Okay – now do just what I tell you – open your mouth”

I obey and present the impressive collection of porcelain crowns that helped my old friend the dentist put his third child through private college without a second mortgage.

“Good...very good....… now, watch me.” My heart races as she leans forward and extends her tongue towards me and slowly licks the perimeter of her full well shaped mouth…..”Now you…let me see you use your tongue”

To the inner soundtrack of Gene Krupa hopped up on goofballs going ape on jungle toms I extend my tongue towards her and, with great sensuality circle the perimeter of my mustachioed pie-hole. I know she can feel my hotness...

“Mmmhhh…yes, very good” “Ok, now I will touch you, ok? I will touch your cheek”

A her delicate hand comes close to my face I detect the faint smell of almonds and insecticide – Prince Matchibelly ‘or a good generic I posit…

“Now, you can feel my finger on your cheek, yes? Good then, now use your tongue and press hard against it....yes, do it now, hard!”

With a manly grunt I thrust my tongue hard to starboard, and despite the insistent pressure of her manicured finger manage to hold my own. As she retracts her hand, clearly impressed by my masterful command of Tounge Fu, her white overcoat pulls back to reveal the outline of a young, tight yet ample bosom…..

“Hmmmm……ok….very good then…..now this part can get a little "freaky" for some….we’re going to use food…”

Images of whipped cream body sculpture, immoral acts of epic debauchery using cucumbers and organic arugala in ways never imagined by nature, topped off, naturally, by a fine Cuban cigar dance shamelessly through my mind when my wild reverie is shattered by the utterance of a single word…

“Crackers!”

Ouch…..no erotic potential I can see in them…lets get back to the whipped cream….

“Crackers!...... let me see what happens when you eat one…go ahead”

My fantasie irreparably broken, I return to earth and begin to munch on the dry hardtack as the swallowing specialist with almond eyes and ample bosom stares intently at my throat and makes notes as I struggle to get my Parkinson’s addled throat musculature to move the masticated cracker down the gullet.
This is not how the fantasy was to end…

And in reality, this is not the end, but rather it seems to me the beginning of another phase, where I who maintained an inner self image of an immortal and timeless 25 year old must really begin to reconcile with the truth that the hot medical babe featured in earlier really has z-e-r-o interest in my world-class studliness, but rather sees me as an early geriatric case, an object for study, assessment and statistic, as fodder for the medical file.

So, after noticing a definite decline in swallowing ability I find myself the object of a swallowing study – to be followed in a week or so with a real-time imaging study where you get to drink fou-fou fluorescent and slightly radioactive Mai Tai's while wearing an offwhite hospital gown last worn by who-knows-who who,as everyone knows, has an awful problem with their who-knows-what.

So, knocked down to size, I manage to wrestle the cracker into submission with the help of a few gulps of water….the secret, she says, not to succumb to the potential pneumonias or choking episodes that Parkinson’s can enable, is to chew r-e-a-l-l-y carefully and always have something handy to help slog a stuck morsel down your unresponsive gullet….like applesause, or babyfood.

So I finish the appointment, listen to the minilecture on mindful eating and schedule the next event. On the way out, she thrusts a phamplet with the obligatory smiling grey-haired couple (“Swallowing and You”) into my hands….and, checking to first see that no-ones looking, she says ‘wait…something special for you…take it!’ (ah, so she is hot for me) – and before I can thank her or find the words to say on parting she is gone, leaving only the persistent fog of her perfume to remind me that she was even ever her.

Out in the sunlight, by my newly ticketed car I open the brown paper bag with excitedly and with great anticipation…….a three pack, Motts Individual Servings, Easy Chew Applesause with tear away lids.

2008-05-25T08:59:00.001-07:00

"Smile when you say that" :( A Coffee Saga......)

2008-05-25T06:24:00.000-07:00

SHIT!
Roll out of bed late last Thursday .... well, 'roll' is too slick of a word here....more like 'struggle' to work two numb arms with radiating pain in the left shoulder (is it the PD? spinal stenosis? or just a likely torn rotator cuff?) ......as the Stones chestnut 'what a drag it is....getting old" plays on a repeating loop in my fuzzy head. Coffee...

Rushing to get organized I whack my toe but good into a 25 pound freeweight.....more pain, but not enough to do the trick... still not awake.....need coffee.....need coffee.....

Loop through the kitchen on a mad dash to the door and .....SHIT!SHIT!.....out of coffee!!! Ok, it's gonna be ok....will stop on the way to work for a good cup, something strong enough to defend itself....

Make it over to my Mitsubishi, the one with the skin condition ..... notice the air in one tire is low...no time....key in trunk and.....SHIT! SHIT!SHIT!..... the trunk doesn't open...another 'freakin repair ahead...

Cut off by a methed-out tow truck on a short but perilous drive to the local coffee spot. At least its a non-Starbucks place where they don't comment on the cleverness of your order in faux British accent ( "As, yes a fair-trade double whipped moca yaya deep fried unleaded moccafreakin'chinno in a environmentally friendly recyclable tall cup....e-x-c-e-l-l-e-n-t choice, sir!)

Definitely not in the mood for that.

Just coffee....Java, java, java its very near now.....things 'gonna get better......as my wheels scrapes the curb I know I've made it - slam the door shut, noting the weak thud as my last plastic hubcap falls to the pavement.....make it quick 17 steps into the shop....
hmmmm, maybe I'll order a nice piece of rugalah while I'm here....its gonna get better

I was in no way prepared for what happened next:

'Coffee' I mutter

'Sorry, sir...no coffee for you ' says she.

My blank but clearly pre-murderous look from me prompts her to elaborate...

'Ok....I can serve you....but only if you smile!!!' she beams.

'Just the coffee, please' I say.

'No.....I'm serious sir!.....no smile, no coffee!'

Now while I'm not a depresive, truth be know I'm just not a smily type --- especially ear-lie in the morning on demand.....still Modem's a good sport, and I tell my dopamine and caffene starved brain to wire a message to my hairy cheeks (...not those ones! the face, the face!...) to mobilize and pull skywards.....stand there for about 15 seconds in the effort .....nope, can't get it up...(hey! watch it! not that! the cheeks! the hairy cheeks! hey! watch it not those...)

My hands slam down on the counter in....
"JUST GIMME THE DAGNABBED COFFEE!!!!"

I note the calculating look on the pale young face of the counter girl as she wisely steps back to the hot urn of bubblin' joe and pours a measured cup , all the while keeping one eye pegged on the crazy man seething at the register. As she places it calmly on the counter and now looks sykward , raising her arms akimbo and launches into a sermon for the witnesses in heaven " very well sir....it is your life and if you really want to spend it bereft of the joy that a smile can bring I suppose that there really is nothing anyone can really do to make you ..."

..... I tune her out as a spiral column of caffeinated bliss wafts towards my waiting nostrils. I venture a sip, and the haze starts to clear, ahh to be human again, human again....her voice fades back up .....'just here to help and a smile helps all of us ....you really should smile sir" she says with a smile.

I take another sip staring contentently past her towards the pastry case.
Hmmmmm, maybe I will have that rugalah after all.....

"Rugalah" I say blankly...

"Of course, sir ...but only if you smile!"

<><><><><><><><><><><><><><><><><><><><><><><><><><><><><><><><><>

Postscript:

Made it out with only my coffee....tire now fully flat...SHITSHITSHITSHITSHIT!..late for work and spilled all the 'freaking coffee fixing the tire.......telling the story later in the day I found I couldn't help but .... smile.

Bastard!.....she won......

go figure....

:)

What 500 Channel Cable can Teach Us 'bout PD

2008-05-01T04:35:00.000-07:00

Thanks to 500 channel cable I recently caught a few late night 'Kojak' episodes - 'still have more hair than that grizzled SOB but I actually used to drive the same Kojak car - a monkey-shit brown Buick Century V8 around the Bronx back in the early '80s.

So, they get a bad guy, but they ain't got the evidence and next thing you know they've got him hanging out a 12th story window held only by the greasy hands of a coupla'thugs - you know how these shows go - and either they drop him (rarely) or pull the broken and repentant bastard
back in and get whatever info they came for...then they wack him ......

At first, the diagnosis of PD is - if you'll permit a wide metaphor - much like being thrust out a window held only by an ankle - your entire perception, your innerscript of how your life would play out is scrambled and spinning -- but then

then...its different.

No one pulls you back in. No one drops you. Nothing happens....yet you're still looking decidedly at the pavement as if the goons who got you into this decided to go for lunch and cuffed your inverted feet to a pipe - and then forgot to ever return after 3 boilermakers too many....

I can accept complete change
I can deal with a brush with peril.
I don't know how to deal with this 'dangling'......and this is the crux of the existential challenge by the longterm progressive degenerative reality of P.D.

Part of me secretly envys the quick exit enjoyed by some. Take Omar, from the 'Wire' shot in the back of the head by young thug...never saw it coming...
As in all things, the anticipation of the thing itself is the most difficult to bear - all of us come and go....'suppose we all get a different view of the process depending upon our karmic need, tikkun, luck of the draw?
....go figure.... :)

Macintosh Assasin....

2008-04-10T18:11:00.000-07:00

Tasty Assasin

apple hides fatal intent

Now that swallowing has flown

Dang-neared choked on a bite of apple - out of nowhere, just drivin' my monkey-shit brown
Mitsubishi Galant de-lux through the late afternoon haze en-route to pickup my 6 year old
terrorist/daughter when - shazAMMM! 'Freakin bit of apple gets caught in a place at the back of my throat where, till that moment, I never even knew had a place! Nothing was obstructed in my breathing, thankfully, but try as I might, hacking aways like an allycat trying dislodge a wad of steel wool from its feline gullet couldn't get the offending piece of fruit to budge.

This went on for several hours before resolving, and caused me no small amount of stress....sort of like hiccuping uncorrected, or a hangnail but in your throat. More disturbing is what this relatively minor even could presage - when your automatic processes are no longer dependably automatic all bets are off. And even as a driver I 'sucked driving a manual.....

So, I now eye my every meal, each minor snack, with a new sense of respect and trepidation as
my eyes have been opened to see that within that rosy come-hither sheen of an organic Macintosh may lie my ticket to the next world, on, that an innocent-seeming bite of steak may come from a Holy Cow on assignment from the holy one, blessed be he, to be a bovine messenger of doom - no matter how you slice it, the future's just not what it used to be around here.

Stupid Brain Tricks:

2008-03-05T17:51:00.000-08:00

Hmmmm.....maybe the Flushmeister 2000 is closer to my immediate present than I'd like to think. Experienced a new disturbing symptom....smelling things that aren't there.

Getting ready for bed, checking email, was suddenly aware of a series of distinct, pungent and unpleasant odors --- completely un-namable, and not eminating from anything physical (including me.... I checked!)......came and went quickly, 4 or 5 times....not one odor, but a series of them / I found the experience very disturbing...

PD is known to interfere with your olfactory sense....early warning sign can be obliviousness to odors that everyone notices but you. But this....seems to be an internally generated sensation....a hallucination of the nose....misfiring neurons up to shenanigans....

Hallucinations....definately not good :( Is it only a matter of time till visual ones emerge ....'expect any moment Jessica Rabbit to emerge and assume a come-hither pose.....why....well, there she is!...oh, just kidding (....or am I?)

Anyway, this was disturbing...and made it that much harder to catch some shuteye, what with the gimpy arm, tremors, hard swallowing and normal end-of-the-days stresses....
go figure,
Modemdavid

Flushmeister 2000

2008-02-28T18:07:00.000-08:00

Went to see an orthopedist today, the goodly Dr. G...spousal unit was hoping he'd write a 'script for Vicodin...me, only trying to get some relief from an increasingly problematic left shoulder. So, off I go, gimpy arm and all....
After a half hour wait in the examining room deftly completing a crossword in he comes...quick discussion of my orthopedic woes...and then to my utter surprise,

"So, have you given much thought to intellegent toilets? They've really come a long way, technology and all"

say whut?

"You know, the day may come when reaching back to wipe...'not gonna happen. Never too soon to prepare the plumbing...."

say whut?

"Yup....down the road without one of these babies your only hope is to go for the shower..."

say whut?

"Here, look this over" as he hands me a glossy tri-fold brochure on the Flushmeister 2000, with a rent-to-fucking-own option.....and off he lumbers to get the big needle....

Now, I got some problems here, yes. I'm not in 'freaking denial, but I do believe that living as fully in the moment is what's called for to cope...and in THIS moment I am, thankfully, fully capable of wiping my own behind, thank-you.

Seeing my reaction, the good Dr. takes a different tone, and says "look, I'm only trying to get out information that you might find useful, if not today, well, maybe next Thursday"....
"Patients don't always like to hear the truth. Like last week....I got a 500pound whale of man in here 'needs an MRI....but he'll never fit in the machene...so I write him a special admission to the LA Zoo Large Animal Medical Unit....now, no one likes to hear this stuff but....well look me up if you ever need more info on the options"

Which one, the auto-asswipe or large animal MRIs? Sheesh...

So, to cut to the chase...I get a cortisone shot the size of a yardstick in the back of my left shoulder....a new script for physical therapy....and a glossy trifold brochure on the wondrous Flushmeister 2000, with a rent-to-'fucking own option....

And, failure of a spousal unit that I am, 'failed to get a 'script for Vicodin.....
there's still hope...next week I go to the perio-freakin-dontist.....

say 'ahhhhh!
ModemDavid

Up the Down Staircase

2008-02-23T05:09:00.000-08:00

Watching a child grow is like watching a flower ever-so-slowly unfurl and grow - and I'm blessed and fortunate to see this process in the growth of my two daughters, a toddler and part-time terrorist and a first grader. As an adult, and as a parent, you watch your kids knowing that much as they love you they cannot possibly know you in a pers0n-to-person way at this stage.....whatever they see you as is to irrevocably clouded by your role as parent, and especially with those of us who put off parenting till we 'found ourselves' -whatever that now means - with 40 or more years difference in age, the temporal distance is very real and extensive - room for a whole 'nuther generation in that gap.
So, its later in life for me to watch the early life of my girls unfold - I'm reminded of the old wooden escalators at Macy's 34th street, which provided endeless hours of cheap thrills and near-death-experiences when we were kids, trying to evade holiday shoppers and store security for the thrill of running up the down escalator.... or just watching the people move up as you are automatically moved down the down side....
On the down side is where I is....not to be morose, but this is chronic, decline sort of stuff -
and as I watch my kids move smiling up the up side I cannot but wish that I could somehow
make it stop....to meet them at the middle, and just stay there, here, with all their grace, beauty,
potential ...(just not the whining...:) and enough of my facilities to be here fully, to have that longed for time when you are young enough and your kids are old enough to really fully encounter each other as fully human beings, not just as a parent or a child.

Still, mercessly, efficiently the escalator moves and snatches me from my reverie....kids moving up, I'm on my way on my way. The words of Frank Zappa, that iconoclast from the last century, come to mind though, a quote from his Studio Tan album, subtitled "The Adventures of Gregory Peccory".........where he brilliantly defines chronologic time as

"eternity and fractional divisions thereof"

What is a fraction of the eternal? Equally eternal, no? So, maybe there's hope - that in that one moment, that fractional division of eternity, where I meet my children, my wife, and all who I encounter on the metaphorical escalators, that in that moment, secreted, are all moments, timeless, wholly, present, now.....

go figure....:)

Parkinsons Patients: A Logical Choice for the Advant Garde in Virtual Reality!

2008-01-27T17:48:00.000-08:00

So, where are you? I mean it….literally. Just where does your consciousness reside? To what dimensions does it expand itself, and to how small of a non material ball can it become? Like a hermit crab, can it move into any vessel that comes its way?

I’ve been pondering these questions more of late, as I’ve noted with growing concern the gradual seepage of PD symptoms into, what till now, has been the safe harbor of my right side….so long as I could do the hang over there, I’ve been able to compensate fairly well for the interminable tremor and rigidity which Increasingly characterizes my left hand, arm and now leg.

I’m starting feel like I’m being leveraged the ‘hell out of here….here being the body I’ve generally regarded as something ‘I’ fully own. Not the case, as is increasingly more obvious, and clearly a new tenant has taken up occupancy and shows the same singlemindness of purpose that drove our forefathers across the plains in fulfillment of their vision of manifest destiny.

So, I think and I ask: if not here, where do ‘I’ go? And where have ‘I’ gone before…and I think, first about driving.

My dad’s classic ’68 Plymouth Belvedere that I learned to drive…and how difficult it all was to manage up until that magic point where ‘I’ became one with the car….my consciousness expanded to reach to the rusty bumper and back to the tailpipe hung with a hanger which in a previous incarnation held a newly dry-cleaned tweed coat with a cigarette burn on the lapel. That’s when you can drive – when your essential awareness of whatever your driving expands to the full contour of what you’re piloting. Till then – better have some good insurance and a hard head – I remember a few good run-ins with the immovable train trestles of the uptown number 6 train on Westchester Avenue, indeed I do.

Over the years my driving consciousness has contoured itself to operate other memorable vehicles, including a 1973 monkey-shit brown Buick Century (yes, the ‘Kojak’ car), a Chevy Nova, my old favorite ’86 Celica and my current family man sedan, a 2001 Mitsubishi Galant with a skin condition….don’t get me started ‘bout the Mitsubishi. To move on….

I’ve had some fascinating recent experiences futzing around with 3D virtual reality community….second life…...and the beginnings of the strange realization that, yes, it is possible to conceive of – and, even now to actually experience – the beginnings of the porting of your consciousness into an online avatar – and just as the compentent driver is ‘aware’ of his car body, so to does the online avatar become the fringe, and as technology improves no doubt, the focus of consciousness.

So, in recent weeks I’ve experimented with letting my consciousness seep (…hmm…sounds messy) into a variety of avitars including bodies of a winged animal, a Blue Tuxeoed Elvis, a provocatively attired female avatar, and George Bush’s worst fear – a human animal hybrid! What these characters seem to do best, thanks to some amazingly clever programming efforts – is

Dance, dance, dance, with ease and grace and, at times, depraved abandon.

You try that with PD sometimes…..

I remember some time back, maybe around 2000, trying an early 2D chat program and, after a brief interest ( ~ 10 minutes) found the paucity of movement so completely inferior to ‘real’ reality that it held no lasting interest.

But now, two trajectories seem to have crossed – the technology has gotten to a point where it has impact and the movement through the 3D terrain and interaction with ‘others’ has the beginning of depth.

Any my ‘technology’ – i.e my failing wetware which increasingly has difficulty in processing signals in the necessary ways to allow for ease of moment – is on a decline. So as these two trajectories cross the prospect of critical mass – ie. Where an improved virtual reality becomes more enjoyable and compelling than the real thing – a tipping point appears, where, if not just yet, soon we could all be living in a radically transformed reality, with the most disabled here the most ardent adventurers there. Dancing, dreaming, and moving with ease……when this stuff is fully merged with the new field of teledildonics, all bets are off....

Ray Kurzweil, a major figure in modern computer science ( voice recognition software, music synthesis, and futurist extraordinaire) in his provocative “The Age of Spiritual Mmachines' posits that soon…sooner than most think,we will bear witness to the full porting of human consciousness into software.It’s a fascinating premise which, the more I experience the things I’m experiencing, start to seem plausible, possible inevitable.

So, what does the future hold? Stem cell cure? Or maybe a relatively painless decline, drooling and shaking on the outside, while inside, deep with dancing …dancing…dancing with myself…

so till then or something better in day to day reality, on with my virtual blue tuxedo jacket and back to the dance, already in progress…….

Blue Elvis :)

….

…

Banzaii!!!

2008-01-19T05:48:00.000-08:00

Dancing in kitchen

Look! An Angel masquerades

As my sweet daughter!

Yesterday pm had one of those moments…..when, when the delicious, mindnumbing and tunnel-vision inducing busyness of being busy with being busy…

It all faded to black me exposed to my feelings and fully confronted by an awareness of what has changed, what is changing and likely will change in the time-arrow of my life.

And it hurt….

.it was/is/ more likely than not will be more difficult, burdensome and burdening that anything that I experience now, which, while problematic at times, in the larger schema of things still ain’t but a pimple on the behind of a giant wooly mammoth.

Its said in the Pirke Avot (Ethics of the Fathers), a book of distilled communal wisdom of Talmudic sages, that there are 3 ‘stances’ between the Buber-esque ‘I and Thou’ one can adopt:

“whats mine is mine and whats yours is yours’

The hallmark of the average man

“whats mine is mine and whats yours is mine”

The credo of an evil man, most 2 year olds, and the IRS.

“whats mine is yours and whats yours is yours”

The operating stance of a Tsadik

AND, curiously, the ultimate ‘stance’ we must all take when, as ever it comes and for the mortal among us come it will, IS the last …i.e. between oneself and the Power-that-be /ribbono shel olum (master of the universe) an ultimate acknowledgment is inevitable that everything that I have that I can lose….everything- from the most tangible to the most ethereal, each and every ability that within a normative healthy phase we fully is assumed as granted….all of it….is/was only on loan.

So, stupid!, why cry over the loss of what you never really had?

BANZAI!!!!!

One little word, how can it mean so many things? "Graceful acceptance of ones destiny"…..still easier said than done.(thanks, Amparo!)

So there I was, momentarily hit/hurt/by the suck-i-ness of this all when, serendipitously, I remembered to put on a new CD with a wonderful Klezmatic version of Shalom Alechem I planned to sing with the family for Shabbat…hit the wrong track and played a hot Eddie Palmieri salsa number----the kind of Bronx Puerto-Riceno soundtrack of my youth sort of thing….

and just then a little angel impersonating my youngest daughter took my hand and led me to the white-tile dancefloor that is our kitchen and there we were, back in Orchard Beach, on a sunny day with Salsa blaring from competing boom boxes to the smell of roasting g-d knows what in the warm setting sun. I was summoned back to earth only by the pungent smell of yellow rice burning to black...

Banzaii!!!

The Patience of Parkinson's.....scary!

2007-12-28T11:36:00.000-08:00

Chronic, progressive,

As water saps strength from stone

Cliff breaks as I tremble

I like my politics progressive, thank-you - not my ailments if’n I had my druthers.

But my druthers are handled by others, largely at least in regard to PD..….and this time around I’ve taken on a partner who’s calmly steering the ship to a rocky shore . One of the things you can learn by experiencing the slow creep of Parkinson’s is the power of patience and persistence – at least from the disease process itself. It's in no rush, hakuna matata, and while you don’t have all the time in the world, it does. So things change, slowly, subtly and seriously…

Still doing better than not in all regards, but I note some disturbing new symptoms – occasional involvement of my right arm, till recently not at all involved and – equally if not more troubling, some difficulty swallowing. Swallowing is not the type of thing you think about very much, till it becomes less than fully automatic. And, believe me, you start thinking a lot then. So, tell me, how do you swallow?

Peristalsis….(add short segment here)

So, while the disease won’t officially off you itself, it sets up a myriad of ways to deliver your
demise (we deliver!)….falling without reflexes to recover is a popular one, choking growing out of swallowing difficulties, also a perennial, or complications from pneumonias becoming more common with progression of disease all among the top ten ways to check out growing out of this withering away of motor control we call Parkinson’s.

As the process commands and deserves great respect for its patience and persistence, so too must I gird myself to be strong enough not to yield my center, my power to resist that which I might and accept unavoidable changes as they occur, the strength to open a tremorous hand and release with the appreciation for having had them the powers the precious capabilities that collectively form the dowry of health which the more fortunate among us bring to each earthly incarnation.

Prius Envy....

2007-12-21T21:07:00.000-08:00

So, I gets the Mitsubishi back from the shop with the shiny new tranni and within a days it's stalling, and jerking 'n huffing and generally not behaving the way a satisfied car with a new transmision ought to act....so I hoof it over the a local car rental place at 7pm just in time to snag the sorriest and very last rental on the lot...a shiny red DaeWOOO! mini....hot damn.

Drove this clunker for two days while the garage celebrated their good fortune at finding a new donor for thier slush fund...people treat you, well, different, yes....thats the word, different in a daewoo! (there's the marketing pitch .....daewoo......different!)... heres how...

othewise courteous little-biddy old lady drivers feel suddenly free and empowed to drive by you and give you the finger.....not a single, but a triple-thrust fuck-you gesture....for no apparent reason

little children know its ok to toss old soda, or diapers at you as their leer down from towering hummers and suvs, while the dad looks on, winks as if to say, 'thattaboy!"...

people will cut you off without compunction in this thing.....
looking forward to getting the mitsubishi with a skin condition back soon!

Prius Satori Moment..

2007-12-18T21:02:00.000-08:00

When it goes, it goes
When it stops it just stops: silent!
Prius Satori...

'Been an up and down week - down: transmission died / up: rented a Prius.
The three day repair puffed out to six, so in that time I had a good opportunity to get familiar withe the electric/gas hybrid. The amazing thing about the technology is how completely silent and still the car is waiting at lights when the engine disengages - unlike traditional cars, which even stopped always have an agenda of 'go', eternal automotive manifest destiny, if you
will the
Prius just hangs there, state of quiet and complete stillness, an unexpected moment of simply
being there rather than going there.

So how does this relate to PD.....well, it doesn't, not in any meaningful way - other than a reminder to live consciously in the moment you're in -- good things open up unexpectedly, Prius Satori.
And now, everybody into the full lotus position, deep healing breath in, now.....

"oyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyy"
Yiddish trancendental mantra"

On Spaghetti and Billiards and Conducting....

2007-12-16T07:32:00.000-08:00

'Trying to make 'zee love without 'zee woody,
is like shooting pool with wet spaghetti"
Pepe LaPieu

Fear not, gently reader, for Modem's Woody is strong (read my 'Stalevo Horndog' entry) - why I'm hornier than a two-peckered billygoat roaming free in the cialis-patch, truth be told!. Yet the quote from the grand Warner philosopher has new meaning to me as I wrestle with the existential 'is-ness" of what these changes in control of basic bodily movement translate to in day to day experience. These days, I am hyper aware of how having the Heebie Jeebies (i.e., the disease formerly known as Parkinsons) challenges me in playing and conducting music. As for conducting:

Conducting, in its essence, is all about communication of intention through gesture. Movement disorders, Parkinson's for example, strike at the medium between the two - and as they challenge your ability to control the nuance of your own gesture, so to do they impact your ability to shape and mold the fine gesture and subtlety of movement of the 5 or 20 or 40 musicians in front of you. As a frequent keyboardist/conductor for musical theater, it's been truly dismaying to witness the loss of specific skills once taken for granted - i.e., playing the keyboard with the right hand while conducting with the left - grow undependable, risky and
atrophied. Any yet, you struggle, you find ways to compensate -

some truly amazing histories come to mind in this regard, foremost among them Django Reinhard, Hot Jazz Gypsy Guitarist who made his mark with only three grotesquely fused digits on his left hand, the result of a high-intensity cellophane fire that left him maimed. And, in a wider perspective, we're all on our way out once we've made our way in, so heebie jeebies or not, it all comes back to making the most of what you've got while you've got it.
.......carpe 'freaking diem!

How do we do what we do, while we can do it?

2007-12-01T18:09:00.000-08:00

From conception to intention without a hiccup...until the hicupping begins...
'Stitch got a glitch' sort of thing, only its happening to you, you and not some marginally
cute animated disney-'freakin space alien....and that makes it mighty personal!

So how does the quarterback throw the flawless spiral, the dancer the impossibly precise kinetic gesture, or the master musician one focused note so emotionally charged that someone back in the nosebleed seats is propelled into a profound emotional catharsis, a node struck on their string of inner experience, as a doctor would tap your knee in a neurologic exam, only this time with a sonic hammer weilded by a muted trumpet played by a dying jazzman?

There's so much we take for granted... being able to balance, to extend a steady arm, to swallow.
It's been a little disturbing to experience challenge to each of these formerly taken-for-granted
abilities of late - and as a keyboard musician and conductor of a reasonably solid high school jazz ensemble and orchestra I cannot deny that ability to acurately control gesture has begun to impact how I work....."mr. stictch got a glitch.....daaaaaaang!" (said in the vernacular of a contemporary high school terrorist)

Woozy Horndog

2007-11-22T09:46:00.001-08:00

hot off the haiku press......

Stalevo horndog

With Woozy lusty lustings

So Rigid yet shakey!

Well, suppose the good news is I ain't dead yet....probably won't be for a good long while.

This stuff does seem to futz a bit with you libido...in a positive way, but not a good enough reason to advocate for the bright side of Parkinson's....

Baby Aspirin, Turkey & the Calendar

2007-11-21T21:05:00.000-08:00

Interesting to note how you note the years passing....now I can do it by paying attention to when I run out of a bottle of lo-dose baby aspirin, recommended for cardiac health, just around Thanksgiving each year So, another 365 tiny hazy yellow baby aspirins go by..... maybe I can just do 'em all washed down with some tasty cranberry sauce.
Heading down to San Diego for a short vacation with the family ....looking forward to it, but it brings me back to the time a year ago just before getting a diagnosis. Had my chain yanked but good then....all kinds of tests till they found something: cervical spinal stenosis - narrowing of the spinal column in the neck.
I was euphoric! No 'freakin PD - now all I had to do was get on the list for one of those amazing new neck transplants you see on the science shows and home free! Alas, twas not to be...
Neurosurgeon looked me over- nothing there causative of my symptoms. Instead, I get BOTH prizes....hard hit at the time, even harder due to the window of unfounded optimism.

Mortality sucks, but it does make for compelling drama...

I dunno...gonna try to enjoy each moment as it comes.
Happy Thanksgiving!

My Urines So Bright I've Got to Wear Shades!

2007-11-12T10:14:00.001-08:00

My urines so bright

I've got to wear shades!

M-M-M-My Stalevo!s

Hearfelt apologies to Huey Lewis & the News who never in their wildest dreams could think that their little gem of an '80s song would turn up in the 21st 'freakin century as a witty jingle for Parkinson's medication. It they ain't dead this'll kill'em!

This stuff does f**** with your metabolism, no doubt. Anything that turns your pee glow-in-the-dark highlighter yellow and crosses the blood-brain barrier is highly suspect in my book!

With baby boomers now entering the Geezer years we are already seeing a statistical bump in new P>D> cases -only a matter of time till marketers seize the opportunity to 'service' this new consumptive and drug-hungry market niche.

Stalevos biggest competitor is Sinemet. Which sounds better to you?

I'd pick Sinemet! Sounds like a breath freshener...

mmmmmmmm, cinnomeni!

!.. or maybe a pharmacological add on to your favorite Starbucks drink (mmmm-maybe I'll have a
lowfat double Sinemaccino). Now that's good branding!

Stalevo, well geez, thats another story....damn fine drug, IMHO, but needs a marketing makeover. Sounds like it would make your 'shit stanky(!)....which it don't or turns your pee glow-in-the dark yellow, or, in some cases orange (which it do!) is a percieved negative in need of being creatively reframed, re-envisioned as an asset.

'M-M-M-my Stalevo! Its your personal, portable liquid highlighter!

or new STALEVO SUNSET with Orange Affluent!

I dunno....not quite there yet but its a start....

Blue Velvet & Ecstacy

2007-11-10T16:56:00.000-08:00

'Gots to ask the question:
was I complicit in the premature frying of my own brain?
I sure hope not, but 'gots to wonder....

A recent study in Science magazine examined the intriguing possibility of a linkage between Young Onset PD and Ecstacy/MDMA usage - it was, however, thoroughly discredited once it became know the the unfortunate club monkees used in the study were injected with high doses of the wrong drug....
So the study in no way proves anything - but, conversely, does not disprove the nagging possibility of a causal link (see link for info on the now discredited study

http://www.mdma.net/toxicity/ricaurte.html

http://www.mdma.net/toxicity/retract.html

But back to the story. So, these days I live a clean and healthy lifestyle here in sunny California,
eat organic mostly, and no drug use for many years (not including of course the Azilect, ReQuip,baby Aspirin, Crestor, Co-Q10 and Neotine Creatine). I wasn't always so disciplined - back in my wild and frisky days as a New York musician I used a considerable amount of ecstacy over a ~ 3 year period while making the rounds of the downtown club scene. Did I inadvertently fry my own brain? I 'dunno...don't really have a 'freakin clue. So, just how did a nice Jewish boy from the Bronx get there? Easy.....

Working on a recording project with Steve A. and Kevin Z. (names changed to protect the guilty-as-hell) ,' headed out after the session to a place Kevin knew of, the MUDD club during its heyday, 1982 or thereabouts. Kevin had a few extra hits of something sent to him from a lab on the west coast....Ecstacy, the real deal, long before most anyone anywhere had heard of it. Always one for an adventure, washed it down with a Heinekin swig and away we go.

Nothing. Nope. Nothing.... Nothing....... Nothing...... and then

(20 minutes later) I turn into a complete, and surprisingly effective, dancing fool. You have to understand that I don't dance....playing music while others dance, yes, been there and done that, but I had rarely ventured onto any dance floor unless the occasional mandatory hokey-pokey at your cousins wedding sort of thing counts. But this, this was different.....

Before long I was holding it down with one, two, even three very hot, sultry and very naughty downtown hoochie-mamas - at least two of which were definately real women / as for the third, looked maybe like Ann Coulter with a hint of a 5 oclock shadow....but thats another story. Steve and Kevin stared in disbelief.....I had found a niche, a groove, a rhthmic place in the universe where I was completely at one......

Wasn't long till I bugged Kevin to hook me up with his connection - and for a year or two I was a regular at the MUDD, an irregular at local afterhours (open at 4am) and even the after-after hours ( recall seing sunlight at someplace aptly called 'The Nursery"). Supported this new habit by selling off the 40 or so crushed blue velvet tuxedo jackets with oversize black lapels my pal Jeff sold me cheap....insisted that they fell off the back of some truck, and who the hell was I to question his integrity?

So there I was, a snapshot in time, dark figure in blue velvet dancing provocatively into daylight with anonymous skanks from a lost era.

And, here I am, approaching fifty with the heebie jeebies, dancing with myself.......

All I know is that if/when this shit gets REALLY bad I think I'll pull off the patch, stop the stalevo, dust off my old blue velvet tux sit back and enjoy the sunset with a few ecstasy hits washed down by a cold frosty beer ....

If you live your life well, I hear everything looks better at closing time....

Fatal Triangulation...

2007-11-07T05:36:00.000-08:00

Live in the moment....some are more difficult than others. Case in point:

Regular visit to movement disorder clinic last week...disturbing wait, today. In the center of the waiting area was a man writhing in a wheelchair, breathing hard breath with great labor, his mouth an open cavity with lips pulled back over a tootless rim. On another side with a Persian man in his sixties, also in a wheelchair, but otherwise relaxed, accompanied by his wife and a daughter of twenty or so. And there was I....
For one moment there was a connection between all three...I looked at him, looking at me, looking at him....each, as if for a moment acknowledging a silent but implicit linkage. This is not your Disney's "Circle of Life".... hakuna 'f****** matata, indeed!

As for the deathly ill, man - he was seemingly all on his own, in terrible and loud distress, even in a hospital with various medical folk walking by. Everybody seemed to assume, even I for a while, that SOMEBODY was looking out for him. No one was - I finally went to the desk to tell the receptionist...just as I did he fell rigid from his chair to the floor, drooling. Several onlookers, including myself, rushed to set him upright - his body was heavy, tense, petrified, ready for rigor mortis. While you never really know where you're heading, looking at this as a possible end trajectory for your own journey was truly disturbing.

As a young child, I remember many times closing my eyes and pressing just so to see an internal mosaic within, and imagine meeting my future self walking the other way as I returned from school heading north on Crotona Avenue in the Bronx. Invariable, my older self was a handsome, smiling and accomplished business-sort-of-guy who would smile, give me a big 'thumbs up!" and head along his way to whatever sort of hip important stuff it was I do in the future now past.

Now its more like the Matt Groening cartoon I can't find....visiting self from the future pops in, diseased, ill and broken, says to his younger self, he sez....'son, I'm you from your future.....and I've got bad news!" Maybe from this point on I just commune with my younger self.....

Minefields & Timebombs

2007-10-12T21:17:00.000-07:00

A Walk in NYC

Fall in love with a thousand strangers,
Knowing full well that the lure of anonymous connection is never to be made in flesh,
Shirk in fear of a thousand apparent felons,
Knowing that the whack of the leaden pipe, the cut of the blade or the leering bullet engraved with your name will never come…..
Until it does…

Hope my poem doesn't sound paranoid. Reminds me of a story: man goes to a shrink to prove his friends wrong.....they all say he's paranoid. Doc does battery of detailed psychological tests, calls him in: 'well, I have good news and bad news for you..."

"what's the good news?"
"you're not paranoid"....."Great! 'Knew it!....so, doc, whats the bad?"
"Checked around a bit.....everybody really is after you"

I find myself living amidst minefields and timebombs....
the first is of a more pleasent variety (2 and 6 year old daughters....
"mine!""mine!"mine!""mine!'MINE!!!! WAHHHHHHHHH! / you get the picture.

The other is of the PD variety. Still early enough in this process that many of the things that inevitably will happen haven't.

Timebomb: telling at work
Timebomb: telling wife's side of the family....
Timebomb: explaining this in a healthy way to my children....
Timebomb: further impact of process..

Things kept unexpressed develop more psychic gravitas....suppose the key is to accept the reality of changes coming....not to rush them....and not to fear...

New Forms of Deep Brain Stimulation....

2007-10-06T17:14:00.000-07:00

Played handball today with my six-year old - felt really good and triggered some 'thinking-

At first, I was amazed at how much my body remembered - spent a good part of my teenage years playing handball growing up in the Bronx - and it all came back. First, the pain....hurts like a son-of-a-bitch, at least at first. I used to play so hard that my hand would swell to the size of a plump grapefruit - and then I'd go and try to make music at the keyboard. Switched by my early 20s to a raquet, which insulated me from the pain....'kinda stopped playing all together by 40.

But playing today, and feeling the pain -and exhilaration to see that even my gimpy left arm still knew in some deep place how to return a ball - watching my daughter run this way and that to whack the ball - all the pain of PD faded and I saw myself back in the Bronx, not much older than my little girl trying unsuccessfully but happily to return the effortless volleys shot by my Uncles Joe and Uncle Izzy, the pickle maven (ran "United Pickle Co".,or so he said...probably was some front for the Mob, looking back)...and, if but for a moment, it was all OK.

So, seems I have stumbled upon an organic form of Deep Brain Stimulation -
buried memories triggered by the whack of an errant tennis ball - 'gots to beat the kind where they pop electrodes into your head and turn up the juice in your cranial toaster-oven.

Parkinson's strips away the insulation of any happy plans you may have - think I'll start playing again....without the racket. Feels right.

Strange Attractors

2007-10-01T20:16:00.000-07:00

Gin a body meet a body Comin thro' the rye,
Gin a body kiss a body, Need a body cry?

When like meets like an attraction, a visceral magnetism seems to operate to pull one towards the other. Kabbalistic lore posits that we were all once part of the primordial body of Adam Kadmon, the initial human containing all the souls of every human form ever to manifest. And when you feel an unexplainable attraction to a stranger its probably because in your primordial state of creation you were both part of the same organ ... maybe the primordial ear, or hand or eye (....now we can better understand where assholes comes from .....:)

As for my story, I've noticed a strange - non-sexual, but compelling -- attraction towards another teacher who I can clearly see has a Parkinson's condition (unilateral tremor, stiff arm, etc....all the markers I know too well) - though she has never come forward and revealed this to the faculty or students (...nor, have I).

So when I run into her the best I can describe it is as a meeting between the PD consciousness in me and the PD consciousness in her - its as if 'it' recognizes a nearby manifestation of the same 'morphic field' that it inhabits. Strange stuff, strange attraction. Go figure....

Counting your Blessings....

2007-09-29T20:50:00.000-07:00

One of the things you could say about me is I'm a man with deep pockets.....unfortunately the periodontal variety, not the financial kind. So - when I made my most recent visit disclosed when asked if I were taking any medication that I had a PD dx and was on Azilect and Requip.

The Drs. reaction was scary - gave me a nervous smile, said aloud 'well, you just have to count your blessings!" - I could see him make a quick count of his own on his gloved hands before dashing out of the room.

Go figure...

Smile! Now '50 is the new '70!

2007-09-28T20:20:00.000-07:00

Had a business venture some time back (Positive Content Interactive) and worked closely with a major marketing guru named Bob. He was into developmental psychology big time and was angered with Big Advertising for its relentless effort to turn younger and younger children into adult consumers. Apparently there's even an acronym in the trade for this - 'KGOY' i.e., kids getting older younger'.

On the other end of the extreme, marketers work just as hard to keep aging boomers locked into an endless & highly consumtive adolescence, even as they wrinkle, sag and droop their way into through midlife and beyond. So there's alot of pressure to 'think young'when you're not, and to act old while half of your milkteeth still are in your head. 40 is the new 30.... and 60 is the new 40...which is, of course, the new 30.

Not for me....P.D. symptoms, slow movement, gimpy arm that screams in pain trying to simply put my arm in jacket....often make the '50' I'm approaching more like the new '7o. So, maybe I'm the real 'avant-garde'.....ahead of my time.....'MGOY' i.e., men getting older younger.

Drug managment ...

2007-09-28T20:00:00.000-07:00

Pale pharmacy girl

Ashen skin from florescent lights

Greets me by my name now. . .

I much preferred the drugs of my youth. I am for the first time in my life starting to notice - and be recognized - by the 'regulars' at the nearby CVS pharmacy. My new family is made of an odd assortment of zocor-popping, paxil dependent, lunestra lusting and sinemet sucking geezers and geezer pleasers (safe bet that the previous sentence was never once thought, much less uttered, in all of human existance....) ....bunch of 'freakin druggies, and I've joined the club. Only difference now than in my teenage experimental years is we all have a license now.

If this country is serious about the 'war on drugs' we damn well better start to figure out how to live healthier and find alternate modalities to manage long term conditions.

But in the meantime though, I'll have to resign myself to doing another crossword as I wait in line for another monthly supply of requipcrestorzilect salvation. Hallelujah!

Reflections on D-Day

2007-09-27T19:58:00.000-07:00

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.....

2007-09-25T04:53:00.000-07:00

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!

Disturbing Progression

2007-09-23T20:13:00.000-07:00

Meds. not doing the trick, far as I can figure. Taking Azilect and Requip...'supposed to operate by discouraging enzymes in the brain from breaking down the existing dopamine. Been on this stuff for ~ 3 months....much preferred the recreational drugs of my youth....this stuff, so far, does not seem to abate the tremor, or slowness - do, of late, feel on the border of dizziness more often than not. Meeting w/movement disorder specialist end of this week.....other class of drugs would be Sinemet and the like which operate by stimulating more production of dopamine.....downside, for many, is it is known to bring on side fx worse than the condition.

The other question I'm wrestling with is understanding just how far in the progression I've progressed (.....like progressive politics, but would prefer my chronic diseases to be staunch conservatives....). I've noted some disturbing bilaterial progression ....i.e., involvement of my right side, which, to date, has allowed me to compensate well. Bilateral progression is not a good sign and from what I know would indicate things may be further along than I'd like to imagine...disturbing stuff, but thats the deal.

Ideally, sinemet may pull me through for a bit till (cue up heroic music) big PHARMA releases stem-cells in a capule to the rescue.....and everything reverts to how it was. Not impossible...but I have no way to know, either. For what its worth, the UCLA movement disorder clinic I'm being treated at just got a $25 million grant for stem cell research, so if things develop I'm close to the source.

Still that stuff ain't perfect....heard of a case where the stem cells developed not into neurons but
a foot or a kidney....not gonna help having a new spleen in your head....or to give anyone a real and valid reason to call you a dick-head :) .....look forward to hearing the good Doc's take on all of this.

Yom Kippur

2007-09-22T20:27:00.000-07:00

Well, went to a reform service this year....

very reform.....

Rabbi's a Nazi (Temple Beth Hitler)

...apologies to Woody Allen and anyone offended by the undeniable poor taste of the previous joke.

They sang nice...... 'ah regular Mormon Pumpernickle Choir, they wuz ......
and they really put the 'yum' back in 'yum kippor', lox n'bagels, hot coffee strong enough to defend itself (service features a 'designated faster', quite popular).

Not what I've been used to, but the kids had a good experience.....
good to try new things //

\____/ l'chaim & l'shana tova to all.

Nice Name Needed Now for Nasty Disease.....

2007-09-20T20:28:00.000-07:00

'Parkinson's' is a pretty crappy name for this affliction ..... mean no offense, but to my ear it sounds much too Protestant....that there's an implicit requirement for you be a Presbyterian in good standing with your local parish to have it. Truth be, its an equal opportunity destroyer....

Still, what's in a name? Everything....

Take Alzheimers....Most young people today know not from its terrible reality (...saw my grandmother wither away from this) While the name had potential it has suffered from poor marketing and lackluster p.r. efforts. This is clearly evidenced by standardized testing of young people in that when given a range of options on a multiple choice test most usually identify Alzheimers it as a light beer...

Big Fruit knows this - prunes had a poor image, not a hip, happening young person's fruit. So what did they do? Marketing magic: DRIED PLUMS (" the fruit formerly known as prune"....skuttlebutt has it that a endorsement deal is in the works with "the artist formerly known as Prince". Keeps the old bastard regular, apparently....

Methinks something of a similar nature need be done for this sinister condition. I say we check if the naming rights are available for -

The HEEBIE JEEBIES - "What? You vant, boychic, I should tell vhy the hand shakes, scmuck...? Zis I vouldn't vant for my worst enemy, but for you i sell for only $5- its the Heebie Jeebies! schmuck!... the disease formerly known as "Parkinson's"...... and my goiter, thank you alzo mister, for not taking the time to even ask , iz also not so good, but thats another story...."

Aaron's Agony, Moshe's Malaise, maybe Scwartzes Tsurris............................ i dunno, anything but Parkinson's, anything.

Hakuna Matata

2007-09-18T17:49:00.000-07:00

Good news.... skin doc looked at mole -it's all o-kay....hakuna matata....

Promtly called my wife, who was a little concerned too, and exclaimed

"great news, honey!...you can kiss my ass!"

(only time I'll probably get away with that one).

Yee-ha....!

Holy Molie!.....

2007-09-17T20:41:00.000-07:00

New challenge....found a mole on my right buttock which has suddenly elevated and become sensitive. Going into the dermatologist tomorrow to have it checked and play a rousing game of whack-a-mole....may call for an emergency buttectomy......probably not, but sheesh nonetheless.

Moral of the story: having a chronic condition does not grant you a special exemption from the heartbreak of psoriasis, bleeding gums, tooth decay, ebola and every other possible health issue that a person can confront. Some of the PD meds have associated elevated risk of melanomas - as does the condition itself (loss of pigmentation within the brain / bound to have systemic effects).....will have it checked and go from there.

Dag-nabbed gimpy arm....

2007-09-16T13:54:00.000-07:00

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.....

Social Implications.....Telling

2007-09-16T13:51:00.000-07:00

Who to, how to tell...

Endings shrouded in twilight

stark diagnosis

2007-09-16T10:14:00.001-07:00

Shots over the bow / first symptoms...

2007-09-16T07:10:00.000-07:00

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

On brain death....

2007-09-15T20:55:00.000-07:00

Dopamine lemmings

Rush to embrace the abyss

For what noble cause?

On Diagnosis & PD

2007-09-15T18:44:00.000-07:00

s t a r k d i a g n o s i s :(

"in 10 years you'll be hit by a truck"

have a nice day ! :)

Keeping it all in perspective is important, no doubt. I enjoyed at least 45 years of excellent health - you don't have to look far to see small children wrestle with serious disease or injury, young veterans of unnecessary wars broken, shattered or dead leaving families in the wake - so the element of tragedy is relative. Still, as enlightened as we like to pretend to be most of us still spend most of the time living as if we're the center of the universe. So, no matter what, you still feel it as a mule-kick to the gut to be diagnosed with a chronic and progressing disease process .... slow brain-death, while you still have lots of big plans for your grey matter is not for the faint-hearted.

Biggest difficulty with something like in PD dx is its nasty and insistent trajectory - have a stroke, and the doc is likely to consider you at your lowest point and work with you to regain functionality. With PD, essentially, you're at your best now and on your way towards inevitable loss of function, motor control and then some.....while it doesn't officially kill you, it sets the body up for death. Short of any real breakthrough therapies - and there may be some on the horizon -- at best treatment offers a very dubious and tentative promise to slow progression and alleviate some of the symptoms -- often only to create new and more devastating ones. Hard to get happy after being hit with that :(

So Figuring out how to carve out a a place / mentally / coping not to be completely subsumed by the negative has taken on added importance for me- the present, while more challenging, for me is more good than not - the challenge is to stay in the moment - and not to time-travel to a totally f***** future and bring back a great big heaping slop-bucket of tsurris (yiddish-'troubles) to annoint yourself, friends and family in the present. Not so easy for the non-zen masters amongst us - and even if you manage somehow not to do this, good chance your spouse, helpful doctor or concerned friend will inadvertently find a way to do it for you.

My challenge is to live positively in the present......

I will now invoke the ever-handy transcendental Yiddish

(into the full lotus position.....deep healing breath in and......

'oyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyy'

Call me Ishmael....

2007-09-15T18:25:00.000-07:00

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 \___/!