Personal reflections / impact of Young Onset Parkinson's in life of a late-40's musician,husband,father and teacher. Metaphysical implications of disease, musings on life, music, poetry ...

Friday, December 28, 2007

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


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.



Friday, December 21, 2007

Prius Envy....







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!

Tuesday, December 18, 2007

Prius Satori Moment..


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"

Sunday, December 16, 2007

On Spaghetti and Billiards and Conducting....


'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!





Saturday, December 1, 2007

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


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)

Thursday, November 22, 2007

Woozy Horndog

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....

Wednesday, November 21, 2007

Baby Aspirin, Turkey & the Calendar


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!

Monday, November 12, 2007

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


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....





Saturday, November 10, 2007

Blue Velvet & Ecstacy


'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 ever
ything looks better at closing time....

Wednesday, November 7, 2007

Fatal Triangulation...


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.....

Friday, October 12, 2007

Minefields & Timebombs

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...

Saturday, October 6, 2007

New Forms of Deep Brain Stimulation....


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.

Monday, October 1, 2007

Strange Attractors



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....









Saturday, September 29, 2007

Counting your Blessings....


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...

Friday, September 28, 2007

Smile! Now '50 is the new '70!


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 ...


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!






Thursday, September 27, 2007

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....

Tuesday, September 25, 2007

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!

Sunday, September 23, 2007

Disturbing Progression


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.


Saturday, September 22, 2007

Yom Kippur


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.


Thursday, September 20, 2007

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


'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.


Tuesday, September 18, 2007

Hakuna Matata


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....!


Monday, September 17, 2007

Holy Molie!.....


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.


Sunday, September 16, 2007

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.....


Social Implications.....Telling


Who to, how to tell...

Endings shrouded in twilight

stark diagnosis

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


Saturday, September 15, 2007

On brain death....


Dopamine lemmings

Rush to embrace the abyss

For what noble cause?






On Diagnosis & PD




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....


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 \___/!

What The Hell: A Life in Hell Fansite