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...

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!

Reflections on D-Day

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

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

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

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

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

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

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

Wrong ended therapy.....

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

...simply stronger butts!

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.

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.

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.

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....!

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.

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

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 \___/!