MIA Update

Reports of my demise of been greatly… Apologies for the long absence. I am back in the saddle. and hope to have something to you shortly. (No plans to define "shortly", as I have made that mistake too many times :-) (I can say we are talking days…) See you soon, Blair Apologies for the absence. Recovering from back surgery. I hope to be able to cobble together a blog entry for you in about a weeks time... Blair

Ain't No Cure For The Summertime Blogger Blues..

Indeed, with the weather so spectacular these days it is been exceedingly tough to bring myself to sit down in front of the keyboard.                  

Working on a piece that should be out shortly.   Sadly, the topic will touch on the recent passing of Robin Williams - and of course the revelations of his recent  Parkinson's diagnosis.

Look for something about the end of the weekend. before weekend! (Fri Aug 29th)

Blair

Hope and The Hapless Wordsmith

The
Hopeless Optimist
Hopeful Agnostic
Optimistic PessimistHapless Wordsmith

“I have come to accept the feeling of not knowing where I am going. And I have trained myself to love it. Because it is only when we are suspended in mid-air with no landing in sight, that we force our wings to unravel and alas begin our flight. And as we fly, we still may not know where we are going to. But the miracle is in the unfolding of the wings. You may not know where you're going, but you know that so long as you spread your wings, the winds will carry you.”

― C. JoyBell C.

I have been sitting on my latest blog entry for so long that I'm afraid to look at the calendar to find out exactly how long it has been.  More worrisome is that I seem more preoccupied with understanding why this has taken so long than getting the thing done and uploaded. Doubting that I can back up my claim that I don't  believe in hope?  Worried that people will think I'm some sad, depressive fellow worthy of their pity? Concerned that some readers will be turned off by my statement?.  A confessional yes to all!

I also realized that I needed to cleanse my blogging palate, as I was a tired blogger who seemed more intent on swiftly justifying my current position than discovering if there was an alternative truth to my seeming condemnation of hope (and there’s no tougher pill to swallow than the realization that there might be an alternative truth). I had been gnawing on the same empty bones for weeks.

I clearly needed to refresh. Luckily I have been a long-suffering Windows user for many years  and knew exactly what my options were:

1.  Refresh Blair without it affecting his blogging work to date.  You can refresh without losing your jokes, cartoons, and any other filler that you get from Wikipedia. Get out of the house, get physical, reconnect with a friend,

 2. Delete everything and reinstall Blair.  Choose this option if not even your mother will read your blog anymore. Shut down system completely.  Load your bikes on the car and go and enjoy the unbeatable therapeutic triple crown of mountains, cycling, and espresso. If you want to start your current blog piece afresh,  this will restore yourself  to factory settings. Why keep anything? It was a piece of rubbish.

So seriously, you don't "believe" in hope? No, in all honesty I cannot make that claim. I made the mistake of blogging about a very sensitive topic in an extremely hyperbolic state late one night. This often happens in the wee hours of the  morning when the veracity plummets and the drivel seems to run like the readership of a seriously misunderstood blogger.

With Parkinson’s, hope is at best, a dim bulb, a flickering 5 watts of low probability construct.  Like a night light, it functions as an emergency beacon; its primary  purpose is to prevent you from walking into walls at night and becoming the butt of office water cooler jokes. It is best not relied on as your primary source of illumination or inspiration.

I do believe in hope. I simply remain unconvinced that there is much utility in it for me - at least for now. I mean, I keep some in my toolbox, but I've yet to find a job where I needed to pull it out. It's like those “hex” bits (six headed screwdriver bits). When you do finally find a job that you can use it on, you realize that you can actually make do with other bits (an appropriately sized Robertson, or a slot screwdriver) just as well. What kind of self-respecting Macguyver would rely on such a “uni-purpose tool?”

I know, I know, I hear what you're saying, “He's fine now, but wait until he has a bit less to cheer about, then he'll be singin’ hope’s tune. He sure sounds like one of those Republicans, trashing Obamacare - until their Reaganesque luck runs out and they catch a neurodegenerative disease. See them sprint to hop on the bandwagon.

Honestly, I love the idea of hope - I can snuggle up to the warm and fuzzy image projected as well as anyone else. It’s just the practice of it that doesn’t appeal.  So where does that leave us, to live for today and screw tomorrow? Overindulging in hope risks not respecting Parkinson's and its proven track record of neurodegeneration. Could German philosopher Nietzsche’s remark that, “There is no greater misery than to remember happier times” be reconfigured to: “There is no greater misery than to pre-live unhappy times expected in your future". I don’t think there’s anything wrong with focusing on today because you don’t like the prospect of the tomorrow that Parkinson's is likely to present you.

The Road West Beckons...

Hope doesn’t get me out of bed in the morning. The prospect of sitting down with a quad espresso and a blank page does. The chance of enjoying the open road on two wheels with Judy, is what gets me out on the bike and keeps me active. A chance to sit on my front porch with my 4 ½-year-old buddy and chat about, well, anything  -  “Blair, you still have the zoo in your attic?”  “Absolutely  -  two of each.“  “Monkeys?”  “Hundreds - They are so noisy!” (For now, my biggest task is finding a way to explain to my neurologist that my insomnia is  unrelated to Parkinson’s - more to a troop of Capuchins :-)

Gotta run, sun is rising and the road west to the Foothills beckons. Time for another dose of CycloTherapy. Have no idea where we will end up, but that’s ok...

Long time No Post...

The dog days of summer have arrived.  My apologies for the long delay since the last posting - especially given that the topic raised in my last entry was hope.

Hope seems to be a very powerful force for some, a lesser, or even a non-factor for others. It is a complicated subject, not one that can be distilled into small soundbites.  My views are a little more complicated than "I don't believe in hope", making a thoughtful reply a bigger task than I assumed.  I hope to get a reply for this weekend. 

Cheers,
Blair

Looking For Vinny - Parkinson's For Life Without Parole Pt 2

The Phantastic Neural-Penal Translator

While I suspect that many readers might have assumed that the whole shtick with contrasting Parkinson’s and a life sentence in the Big House was just that, a shtick, it wasn’t, (at least by the end of the investigation). I was really counting on this piece to stand on its own as a hard-hitting number - like something that the CBC’s Fifth Estate would punch out. At this point, it was about as hard-hitting as a body shot from one of my elderly brothers.

Struggling, I revisited some of my earlier sources to see if there were any updates I could tap into. I checked my forum account at meetAnInmate.com. My posting: "former beauty queen seeks platonic information gathering sessions on prison life" had gotten so many replies that I cancelled the posting. I have found out that the visitors center was an open set up and not behind glass. I doubted  I would survive the pummelling for my postings stretching of the truth.

I had reviewed an excellent article: “50 Slang Words To Make You Seem Like a Tough Guy in Prison” and immediately recognized half of them from my youth. I called up a few of my siblings and tried some of the remaining words. It seemed to work effectively - they still kept their distance.

I had even listened to Johnny Cash’s Folsom Prison Blues. A few movie marathons later, including  Escape from Alcatraz, Cool Hand Luke, the Longest Yard, etc. and I had my thesis: that Prison Guards and Neurologists were in cahoots.  While my resources didn't allow an in-depth investigation, what we uncovered was certainly enough to call in the good people a The CBC's Fifth Estate.

I'll assume you're familiar with the standard (studio mandated)  opening scene where the new inmate (with the Houdini-like abilities to escape) is read the riot act by the Warden. It struck me how much the Warden/Prisoner intake dialogue resembled the Neurologist/Patient intake dialogue. So much so, that I began to think like a conspiracy theorist. And that's just, well, dangerous :-) I didn't have any particular conspiracy in mind. And that's just, well, worse.

Neural - Penal Translater

Watch as the following Warden statements are run through the Neuro - Penal Translator producing the correct  Neurologese translation to the right. And yes, I will confirm rumours that  as a result of the tremendous success this new product, we're looking at the possibility of using this technology in other applications such as a new Marital Translator, Parent - Surly Teenager Translator, Grumpy Guy With Parkinson/s - Partner Translator etc.

I see you have a history of escapes, assaults, and  you are a real shit disturber - Care to comment?	I understand you ask a lot of questions
From now on you’ll breathe when I say to breathe, you'll eat when I say to eat,  and you'll crap when I say to crap. Got it?	This is Sinemet. From now on you will take it at 5am, 9am, 1pm, 5pm, and 9 pm
No one has ever escaped from this prison	There is no cure for Parkinson's
Here at Alcatraz, I deal with prisoners cannot be reformed	Here at the Clinic  we work with neurodegenerative diseases that will not get better, they will worsen over time
Your ass is mine from now until, oh yeah… LIFE!	I will see you after six months from now till neurodegeneternity!

Yes, I'm not the only one taken aback by  the brazen statement of facts and the unapologetic presentation of an unpleasant reality.  I don't think it's a stretch to wonder whether the two of  them went to the same school - but seriously, you want me to suggest that their programs were barely differentiated? That’s pretty bold stuff. I’ll go with it.

Signs your neurologist may be moonlighting at the local penitentiary:

• They suggest “corporal punishment” as a new experimental treatment for Parkinson’s
• They begin to accessorize with Kevlar. 
• They threaten that if they get one more call from the pharmacy to refill your prescription you’ll be going to the “hole” for six weeks
• When questioning you about your exercise levels, they asked how much time you’ve been getting in the “yard” lately.
• They never turn their back on you anymore

Note: no doubt you have noticed the photo to the right. Yes, that is YOUR Neurologist Dr Degenerate! One of our alert readers sent this in to me.  I struggled briefly with my journalistic responsibilities. Extremely briefly, as if I had any, I was unaware of what they were anyways.  Do note, your neurologist has not broken any laws (at least in the photo). I do share your concern over his ability to function at a professional level at your appointments the next morning. I for one, would not feel good entrusting the counting of my toe taps to someone who has been fawning over Vinny "SmartyPants" Malone.

Vinny, aka "SmartyPants"

So you’ve met the Warden. Now it’s time to take a stroll down to cell block B where you will meet he guy who can really get things done. Let’s introduce you to Vinny in B-6. Vinny is the guy who can get you absolutely anything. Need a nail file for your (ahem…) . nails? Vinny can get one for you. Need to get a valentines card to the Warden’s wife? He can take care of that as well. Need to get a set of floor plans for the prison? Done!

Vinny’s smart, real smart. There should be no mystery why they call him “SmartyPants”. Vinny knows his game well. He knows the posted rules, and he knows the real rules. He knows his needs, his suppliers, and his market, all, very, very, well. Vinny is a master of his limited domain. In the big house, he knows what is beyond his control, what he can control, and when he can attempt to influence. You and I can learn a whole lot from Vinny.

If I was half as sharp as Vinny, I would sit down and sketch out all of the things  I can either control, or influence. Vinny, being the sharp, resourceful fellow he is, would then look for gaps and inefficiencies and would seek out the best people he can find for his team. They may have a rap sheet a mile-long, but they would be the best he could find. Are you bold enough to ask for the best?


So now you've learned a bit about prison life, you've met the Warden, Vinny, and maybe gained a little insight into why your Neurologist is incessantly yawning. Our final instalment looks at the concept of hope, why I don't believe in it - and what strategies and secret weapons I possess to help me through to the finish line.

Next: Final Instalment - The Hopeless Optimist

Looking for Vinny - Parkinson's For Life Without Parole

Usted no me Dijo el Tío es Una Leyenda Del Café?

“Quad Espresso!" the Barrista shouted, giving me a short reprieve from the interrogation I was about to undergo by Shemp, an ex-con. I leapt up, enjoying the notoriety (imagined or not) that ordering such a hi-octane drink would bring. I made eye contact with a few of the regulars, accepting their likely feigned admiration. I raised the necter to my lips, glanced off into the distance, and in my best Juan Valdez accent offered, "nuez, adecegrita, yaque domina la crema" (nutty, suitably bold as it dominates the cream) My disciples nodded in agreement, as the Barrista rolled  his eyes. Good god, They still think I'm Columbian ;)

Shemp and I had crossed paths about 12 minutes earlier outside the coffee shop. He had been panhandling, I, doing a blog entry that contrasted living with Parkinson's to a life sentence of incarceration, was looking for someone with real life correctional experience. Shemp was my man. A free lunch in return for one hour of "Life In the Big House For Dummies."

I wracked my brain for any personal anecdote that might convince him that I was just a little bit less like Howdy Doody and a shade more like Clint Eastwood. Someone once told me that everyone should have at least a minor skirmish with the law. I think the thought was that if you were just one more stupid comment away from charges, it was some indication that you were at least willing to stand up or yourself. I would suggest that the addition of the adjective "stupid"
was maybe a sign that this was a bit less about logic and more about a boiled down explanation of how we actually fill our remaining rooms in incarceration.

I thought I would test him with this one. After a few minutes of conversation, I would wait until the first pregnant pause, look at him with an expression appropriate for a "we got business to do" situation... (of course, I would first need to locate that look in my repertoire), then I would ask him "can you be trusted?" At that point, I'm guessing that he would either strangle me with his bare hands, or he would be ready to do business. I would look at him, pause, and whisper "last week, Monday - I killed a man, with kindness. At that point, depending on his reaction and demeanour, I would either bolt for the door, or really bolt for the door…

I was striding back to the table when I realized that you can take the con out of Millhaven Pen but you can't take…. The grub had arrived, and Shemp's latent penal instincts had kicked into high gear. He had assumed the Emily Post approved correctional dining position - crowding the  plate, arms protecting either flank, shanked left and right with the business end up. That’s right, Shemp ate his meal with two knives. Frankly, it scared the shit out of me just to sit at the same table as a double-shanked Shemp...

I let out a next to silent groan. I managed to coerce one of the few remaining loyal cells in my substantia nigra to help out with some movement, cracking open an eyelid. Ahh - Starbucks, fantabulous. I slowly raised my head off the table, self checking whether I had violated any coffee culture norms. Ok there. A swizzle stick - stuck to my cheek, fell to the table. Shemp,  I muttered…?

 No sign of Shemp. I checked my Starbucks receipt to see if there had been any charges on it - other than my regular quad. None. Was Shemp one big apparition? Quite possibly. I had been warned about "extremely vivid" dreams as a side effect of one of my medications. I got up to go and splash some water on my face when I noticed a napkin on the other side of the table wadded up into the tightest ball you could imagine. On the back of the napkin, was written my working title for the blog entry but not in my writing:

"Once you accept that you are not in control,

you are in control...

Family feud, Unjustly Detained, The Lost years...

Occasionally I will chat with someone contrasting life with Parkinson’s with incarceration, particularly with the concept of a life sentence without parole. Most are uncomfortable laughing at Parkinson’s to begin with, even if I take the lead - c’mon, it’s safe, follow me …. (the ice is thick enough!). I appreciate the thoughtfulness involved, but do wish I could have more belly laughs with others about it. Some disagree with the characterization of Parkinson’s as a life sentence, while others question my knowledge or first-hand experience with the penal system to make a valid case.

For your information, I am eminently qualified to make this comparison. I have watched every epis0de of Prison Break (80),  I survived as a sibling detainee in my youth,   I have toured Alcatraz, and most importantly, I, myself, have done time in the Big House.

Hell hath no fury like a sibling who will one day write a blog

Sadly, the photo to the right can be reduced to yet another tale of brotherly love gone sour, one more example of misuse of RCMP resources by one of its members, (a Sargeant no less), and ultimately, an oh-so- desperate attempt by a brother to knock me down off my favorite son pedestal. (it’s a wonder I can write with such clarity in this thin air).

Cycling through Kimberly, B.C., I was hauled off on an obscure public (in)decency law Kimberly Code 2.6.4  Subsection: Public Indecency and Spandex Cycling that read: “if over 40 years of age, thou shalt not be seen on a bicycle in spandex, unless deemed to be “somewhat hot for their age.”  I took the expedient route and plead guilty. I mean, its not like the sentence was remotely Mandellian in length. (I was out in 20 min.) It’s just that I reject any form of "Hotness profiling".  I know, I know, I could have easily fought it !




Next Week: Part Two starting with The Phantastic Neural-Penal Translator

Water Is Getting Pretty Rough out There

Thursday Update:

Just cleaning up a few puddles here and there.  A few parts were rejected by the censor board. I have cleaned it all up and now you are safe to huddle around the blog with your family on Sunday nights instead of watching Heartland. you will get it later today at long last      

Wednesday Update:

The water can get pretty rough out this way. We like to think that here at Parkinson's Wake we are getting good at handling rough water. Even so, this week it has been coming over the top of the gunnels - slowing progress on almost everything. Posting will come tomorrow. I think it's become apparent pretty quick that a rigid posting schedule is not suitable for me. I'm thinking that the once a week frequency may be manageable but I think we need to go back to the flexible posting timing - as in, it will be posted when it's posted.

Thanks for your understanding!

Blair

Good Things Come to Those Who Wait & The Surprising Science of Happiness

Hello all,

Apologies for another delay. Despite my best intentions,  I was not able to get my column done in time. It's a good one - I'm enjoying working on it and would not want to rush it out the door for the sake of getting it out. It will be out on Saturday.

This week -  Enjoy the following. Many of you will be familiar with Ted Talks. For those who are not, you're in for a treat. This is one of my favorites. By Dan Gilbert .

Harvard psychologist Dan Gilbert says our beliefs about what will make us happy are often wrong — a premise he supports with intriguing research, and explains in his accessible and unexpectedly funny book, Stumbling on Happiness.

Enjoy!
Blair

The Surprising Science of Happiness

Are You Finding What You're Looking For?

Are you finding what you're looking for Ma'am?

I’ve been asked why I often use the term “We” when talking about the blog. I suppose the insinuation is that I am but a lone soprano masquerading as a choir. Maybe, maybe not. In my defense, I point out that as  the title goes, “some days I’m the dog, some days I’m the fire hydrant”. So minimally, there are at least two voices right there.

We at Life in Parkinson's Wake like to poke fun at pretty much anything within poking distance of Parkinson's. If you can't find anything funny about Parkinson's, just  follow us and skate a little closer to the periphery of the truth. Research shows us the health benefits are just as good. That is why we are known to “goof it up” around here. It just feels good - and  now we know why.

For those who missed it, last weekend Linda Loma University researchers provided more compelling evidence that laughing provides tangible, measurable cardiovascular and metabolic benefits. So much so, that in many quarters, laughter is being referred to as more of a legitimate treatment option than ever before.

Consider the following findings rounded up from a number of research efforts:

• Neuroendocrine and stress hormone changes during mirthful (belly)  laughter.
• Anticipating a laugh reduces the level of stress hormones.
• "HAML" [humour associated mirthful laughter] may be another non-pharmacological  lifestyle intervention to provide health, wellness [and] adjunctive therapeutic benefits,"
• Specifically, the study showed that endorphin and human growth hormone levels rise in expectation of an upcoming positive experience - that is, even before the event occurs while other studies have shown that a daily 30-minute exposure can produce profound and longer-lasting changes in these measures.

In one of Prof. Lee Berk’s studies he looked at 20 healthy older adults in the 60s and 70s measuring their stress levels in short-term memories. One group was asked to sit silently, not talking, reading, or using their cell phones while the remainder watched funny videos (Bill Gates  And Steven Jobs cuddling? I’m not sure, they don’t specify what the funny videos were. Following a  break, the “humour group” performed approximately 20% better in recall activities in the nonregular group the humour group also displayed lower levels of cortisol, stress hormone.

In a study published in Journal of Holistic Nursing, patients were told one-liners after surgery and before painful medications was administered. Those exposed to humour perceived less pain when  compared to patients who didn’t get a dose of humour as part of their therapy.

We also came across a few studies that piqued our interest:

• “Repetitive Laughter Effects Rival Repetitive Exercise - So Why the Hell Am I Getting up at 5am for Rowing Practice?”,
• “The Mirthful Laughter and Bacon Regime - Your Best Shot at Happiness?”
• “Husbands Who Think They’re Funny - Feigned Spousal  Laughter And Its Physiological Effects”.

No doubt, you can see where I’m going with this. Our relationship has been changing, and will continue to evolve.  Over this blog’s relatively short lifespan, we have seen the motive of your blog visits change from primarily a time killing session to an intensive therapy session.

In the beginning, this blog gig was just that, a “gig” - an outlet my wife suggested (maybe thinking if I had an audience online, maybe she wouldn't have to endure so much of my stupid humour at home), The Blog project was also pursued with the remote possibility that occasionally I might stumble upon some socially useful musing on life with Parkinson’s that I could share with the world.

Though we might be a pair of individuals careening towards a more professional "patient/clinician" relationship, it would seem that the field of healthcare is not quite ready for us. There are currently no regulations on “laughter therapy”,  the entire field is aching for regulation and education.

While the scientific field is catching up to the field of laughter therapy, dissemination of information at the practitioner level is woefully lacking. For example, there is a complete absence of  information regarding recommended dosages for laughter therapy. Is there a rating system for laughter content?  As an aspiring practitioner, how do I prescribe laughter therapy? How can I control who views what content? And for what duration?

For example, You, right now, in the absence of a specific comedic prescription, do you feel like this entry contains the right comedic dosage for what ails you? How many times a day are you reading this blog? Does your laughter originate from the belly or from the diaphragm?

All indicators seem to point to a significant change in our business model. In fact, this would be our first business model. We are slowly moving towards a user pays site model. We believe that all provincial health authorities will be approving humour as a billable treatment within months.

There are several issues to be worked out regarding treatment options and billable features. Several studies did conclude that the strongest comedic health effects resulting from humour associated with happiness and joy, as opposed to humour based on embarrassment and anxiety. While I cannot offer specifics just yet, I can confidently state that we will be committed to providing multiple treatment options: our regular fare, suitable for most situations and ages. The second treatment option will be based on humour that is drawn from the embarrassment and anxiety vein. If you grew up surrounded by three or more siblings, still have visible scars from the dinner table of your youth, or were tickled the point of incontinence, then this treatment model is diffinitely for you.

Hey, what do you say we just leave things the way they were? I mean, they weren’t that bad, were they?  Me fumbling through my first blog, posting with the regularity of a constipated Sinimet junkie,  snorting lines of  Metamucil behind closed doors. You, plunging headfirst into my Blog searching for nuggets of anything with a shred of therapeutic value,  like a New York City freegan working his favorite dumpster? Sounds like a winner to me :))

So if you’re willing to keep me on retainer in my old amateur status, I’m willing to stick with you. Just remember that you are fully responsible for your own dose, and monitoring any possible complications with other medications you are taking. In short, I am back to my old shtick - spewing whatever nonsense  I feel like, without any complications, repercussions, or censoring.

Life is good - at least on those days that I am the dog  :-)

Cheers,
Blair

There Is Always One More Sinemet - Or Is There?

There’s always one more ...”  I have long subscribed to this adage. There is always one more parking spot, one more AAA battery somewhere in the house, and one more Sinemet.” You may have to circle the parking lot till you're nauseous, rip apart every single remote control  you can commandeer, and as for the Sinemet, well, just keep reading...

Shit...

This adage applies to Sinemet as long as one subscribes to what I call,  “distributed medicating”. This is the practice of keeping a small quantity of Sinemet in virtually every nook and cranny of your daily world. That means a few tabs in most rooms in your house, in your car, your partner’s car, work, in your bicycle bag, your hiking jacket, underneath the sofa cushions, behind the seat of your buddy  Gifford  Falway’s car... You get the idea. Your imagination is the limit.

What follows is a tale of misadventure, of a desperation so gripping, that you may stagger away feeling as if you got a vicarious tug on Blair's dopamine stogie. Be careful before you judge the authors decisions made and actions taken in the final scene. I hope you will agree that one needs to be facing the same consequences in order to understand what decisions you would make.

Scene: A Snowy weekday afternoon, midwinter 2013. Parking lot, Calgary Rowing Club, authors former place of employment. Heading to the parking lot, I am the last one out.

As I took my last few steps to the car a slight stiffening of the legs along with a few stutter steps was all I needed  to know that I was headed for some mannor of  peril. On the trip down I had realized that  I had forgotten my Sinemet ( that pharmaceutical precursor to dopamine that essentially makes fluid (and for some, at times, can  seem like any) movement possible).  

While I was a firm believer in “there is always one more Sinemet”, there is also a reasonable limit to my wishful thinking. My shoulders sunk in the car seat as the realization hit - I was about to begin careening down the backside of the dopamine curve with no means whatsoever to reverse the process unless some Sinemet came into my life pronto.

With no options I was terribly fond of, I thought I should at least give the car one more search. At an almost inaudible level, I heard a voice say, “did you look for it, or did you LOOK for it? I got down on my hands and knees  and immediately a glint of telltale yellow caught my eye - under the driver’s side mat. I peeled the mat up - and there was my solution. My precise dose of three tabs of Sinemet - errr… two piles of powdered Sinemet, and a cracked, dehydrated, sad substitute for a pill. The crushed pills appeared to have been marinating in a solution of road salt and slush. A Slushy with a nice "hit" I reasoned.

I quickly came to the conclusion that I had no shame and there was no doubt whatsoever as to what I was going to do with this "medication". I thought it best at least I should pretend that I had a modicum of shame and pondered the dilemma. I knew there was something like a "five second rule" but wasn't sure if it applied to medication found under the floor mats of your car.

Your turn. What would you have done? Let me refresh your options:

1) Chow down on the yellow powder underneath the floor mat?

2) Call a taxi. (Then endure the hassle of returning later to pick up a vehicle).

3) Call a friend to come to your rescue. (Possibly someone who's never seen you in a "pre-makeup" state.

As you mull the options, Remember that no one will find out your chosen course of action (unless of course you are stupid enough to write about it in your personal blog…)

Update To Blog Posting Schedule

Just a quick note to readers - the next posting here will be Saturday, with a regular weekend posting from that date onwards. Apologies for not being able to continue posting on the less predictable dopamine-fueled  schedule of late. It's just that I think you need more structure and that this is best means of delivery for you.  Obsessively checking for updates to this blog at work, at the dinner table, and elsewhere is going to cost you dearly someday my friend.

Failing this, we  will be looking at an intervention for you and none of us want to go down that road.

See you Saturday,
Blair

The New Parkinson's Alternative Glossary (& The Naked Carpenter)

Sometimes people say I make up words. I reply, "Necessity is the mother of invention." I only resort to forging new words when the English language cannot keep up with my convoluted, dopamine-starved, twisted, fictionettes.

It used to be that every linguistic street crossing had sentries posted to guard against entry of neo bastardized words - inevitably from the Rock n' Roll stained youth of the time. These days, the sentries look to have abandoned their posts. It would appear that anyone can become a pseudo authority and start their own dictionary. It's like we've gone from "Let's start a rock 'n roll band and make a million dollars" to "let's write a dictionary to legitimize our verbal diarrhea."

Of course we have the gold standards, the Oxfords, the, Webster’s, etc. We know of several upstarts such as the URBAN dictionary, the RURAL dictionary, and my personal favorite “Right On The Edge of Town”  (but still close to Starbucks), dictionary, aka, “The New Parkinson’s Alternative Glossary."

Yes, I am pleased to present to you the latest entry in the increasingly crowded dictionary/glossary market: The New Parkinson’s Alternative Glossary. This latest entry fills a strong need for a glossary/dictionary that can decipher and crack the code of some of our multi-worded phrases in the Parkinson's sphere. While these cryptic references are primarily from my personal dialect, many fellow Parkinsonians will recognize some of the references.

This truly is the English language at its most beautiful. This handsome, six page, no-cover downloadable beauty would make a great gift for anyone affected by Parkinson's - but would also be an excellent gift for any others that are curious about how the other 1% live!

Parkinson's Wake has managed to extort a review from Giff, our old friend from REHAB:

"A must-read for those friends and family who don’t find anything funny about Parkinson’s"

Gifford Falway - REHAB (Retired Elders Having A Blast)

We will be feeding you these gems one minnow at a time here on the blog. 
Without further adieu, our first entry is..

Verb (latin)

• Literally, to “seize the night”. Parkinsonian definition refers to an unusual spurt of good mobility, a rare nocturnal “kicking in” of dopamine. This often results in a titanic mental steel cage match pitting a frenetic urge to leap out of bed and “make hay while the sun shines” with an almost equally powerful urge to stay put and drift off into effortless sleep (the latter with the recognition that the typical Parkinsonian banks as much sleep as a coffee taster on night shift.



New York's Naked Cowboy
A distant relative of Calgary's
 the Naked Carpenter

• Additional Info: A willingness to engage in "carpe noctum" activities means the individual must accept the risks of functioning in times of a manic state. There are documented cases of extremely odd behaviour associated with carpe noctum. In one disturbing case in SW Calgary, an individual was found in his carpentry shop working away in his underwear at 3:30am. When confronted and questioned why he was in underwear, he responded "Wouldn't be very safe doing carpentry naked, would it?" It is said that the first respopnder was reminded of New York's "Naked Cowboy". (Minus the boots, the cowboy hat, and replace the guitar with an 8 ft. length of beautiful milled Birdseye Maple.)

It's All About The Bike AND YOU!

I warned my wife before I popped the big question (How many head of sheep does your father own?), that Rasmussens "mate for life." She still married me. Although I was not in the least bit surprised,  that  alone, was promising) Similarly, I’ve always been what you might call monogamous with my bicycles.  Maybe that is because my two-wheeled needs had always been simple and easily satisfied by the typical off-the-shelf, Canadian Tire fare my parents provided.  I have rarely been tempted to philander when it came to bicycles. 

 Calgary? Au contraire. Many young petrol punks here in Cowtown seem to worship their steeds like  carbon-graphite trophy wives,  spooning their exotic frames weeknights until Big Oil spat them out Friday 6pm. Proceeding to litter the walk-in clinics from Canmore to Banff with their weekend warrior booboos, they were already looking ahead to their regular fortnight upgrade. "Hey, did you hear Bowie Cycle has frames crafted out of bamboo/braided milk curds/Tsetse Fly stools..."Stiff as hell, dude". And on to the next frame they were.

I had never really gotten into bikes the way these guys had. Suppose my relatively pedestrian performance demands didn't suggest that anything other than a banana seat and streamers was required. But it was time for me to open the wallet. It was time to invest as I was about to embark on an "epic" (I'm pretty sure this is the appropriate word :-) bicycle trek from St. John's Newfoundland to Inuvik Northwest Territories. 

Date: March 2000 
Setting: A Bikeshop in MyTown, ON, that specializes in supporting  primarily unplanned, unresearched, and unsupported bicycle tours greater than 10,000 km,  against the prevailing wind by L4/L5- challenged 40 year-olds packing gallons of false bravado and a horseshoe  so far up the butt that the dentist was able to use it as a bridge.

It was like I had walked onto the set of Toy Story. Bells ringing, Bike computers pinging alarms, and constant throaty “come hither” whispers from the European titanium beauties. I turned the corner and there she was in all her cromoly glory. "Caribou" was a navy blue workhorse, a Clydesdalesque  bike - one of the few true touring bikes manufactured today, At 39 pounds, an extra long wheelbase, and heavy duty touring rims, the only thing missing seemed to be fastening points for an oxcart. 

I swung my leg over and climbed into the saddle. I heard a barely audible giggle. "What the...?" I locked my feet into the pedals and started to spin." Easy cowboy, this ain't your Daddy's 10 speed"
MIRA! I blurted. I quickly reassured staff that I was not OK, but that I would be fine. That was the last I ever saw or heard of MIRA.

St John's Campsite 1st Evening

As I walked "Caribou" to the checkout I could hear the snickers clearly - "Jim, remember the last time we sold a touring bike?"   "Geez, I think it was at least when that Ben Mulroney was  in office."  "I didn't know we still sold hogs" offered the third Stooge.

No time to waste, 14 days to go before departure...

Campsite Visitor First Morning

Fastforward five months, 141 days, 148 pounds Gorp, 188 cold showers, and one bout of Beaver Fever. I arrived in Inuvik, NWT a different person. Agreed, that does sound quite melodramatic. But how could someone not change? Was the change from meeting people like Artie from St. Johns, who when told that I was traversing to "see the country “, asked, “doncha' have enough friends already?" Did I learn something from the young New Brunswick farming couple who (having met them 20 minutes prior), told me "make yourself at home, we are  heading into Moncton - see you when we get home". Did the final 760 km of gravel intimidation (The Dempster Highway) make me one tough(er) hombre? 

What I take away from that trip, you ask? I learned that many Canadians think that a guy who cycles across the country by himself against the prevailing wind is likely missing a screw (or the cells in his Substantia Nigra are not producing enough dopamine). I gained an appreciation of perspective - an acceptance that more of life is found on the grayscale than at either end. Thirdly, that cycling is an awesome therapy for crap that life throws at you, real, or imagined.

Caribou was a superstar on that trek. It's hard to believe that 14 years have passed since that adventure. Closing in on a decade living with Parkinson's, the bike has taken, and I believe will take a more and more crucial role in fighting this disease. There is an enormous body of research being accumulated. Much of it focuses on exercise in general, but there's also specific, hard data coming out that points to cycling as an excellent activity not only to alleviate some troublesome side effects from Parkinson's medications, but also there are strong indications that cycling has considerable value in slowing the disease.

Here are a few thoughts on why I find cycling so perfect a therapy. If you have Parkinson's, keep in mind as I mentioned before that every individual has a unique collection of symptoms, responses to medications etc. All I can say, is try cycling. If balance is a major issue and might be for many, maybe starting out on a stationary bike should be the default starting point. Talk to your doctor first :-)

Firstly, cycling remains one of the few activities I can still enjoy almost any time, in its full, pure, unadulterated state. That means I can do it fully, completely, and without any accommodations or watering down of the activity. Of course, like any other priority activity, I would always choose to go cycling at a time of peaking dopamine levels. Parkinson's or not, we will all at some point have to make adjustments - choose decaffeinated versions of our activities and most importantly,  recalibrate our training and expectations. 

One of the high points of cycling for me has always been its gift of “flow”. This, I find is one of the most accessible areas of the sport of cycling as the concept of flow seems to be almost inherent in this cyclical, physical motion. Flow is the ability to put the motion on "autopilot". This gives you the opportunity to think about something, nothing, or everything. (The latter discouraged :-) It's true that many of societies greatest inventions, rock albums, and blog entries have been crafted from the seat of a bicycle.

 I think experiencing this state on the bicycle can be extremely satisfying as I find that the physical realities of Parkinson's demonstrate an almost a physical definition of the antithesis of flow. Walking tends to become a stop/start activity (both mentally, and physically), This may help you understand the difficulty one may have navigating through a crowded room. Without the ability to demonstrate any flowing movement, the person's thoughts then turn to a left/right left/right thought process. (No exaggeration there) That will also help you understand why there may be little eye contact in this situation as 110% focus is demanded of mobility.

There are a few evaluative points along the yearly timeline of Parkinson's. As we're speaking of a neurodegenerative disease, It will not surprise you that many of these  markers are indicative of a not so positive result. It is to my excitement every spring that the opening day cycling event has always been a positive marker.    I know that's not going to last forever but I will enjoy it as long as I can.
res·pite
ˈrespət,riˈspīt/Submit
noun
 - a short period of rest or relief from something difficult or unpleasant.

This last item is almost a consequence of experiencing flow. But the definition says it all. The flowing movements of cycling combined with the never-ending changing scenery gives it the ability to set my mind free from the constant barrage of concerns throughout the day related to Parkinson's and its joyous ability to banish worry at least temporarily

Those with Parkinson’s can easily get consumed by the physicality of day-to-day living, of the ebb and flow off their symptoms and of the appropriate actions that are required on their part. The minute to minute hour to hour mental grind of managing the disease can be just that, a grind. Cycling can provide a wonderful joyous break that is hard to find elsewhere.

 It's never too late to feel like a kid again. Cycling has the ability to take you "back to the future" if that's your mode of transport, or help you create new adventure. Whether it's in your basement, or around town, you never know when it might take you…

The Man Behind the Mask Pt 2

Sometimes I do things backwards. I have been known to make a major elecronics purchase, then return home to read Consumer Reports to see how I did.  And yes, it is true that my life sport has been rowing where we choose to travel backwards. Finally, yes, it is true that I started a blog without any mention of plans, goals, motivations etc. for the blog. How about we rectify that situation? Author authored Q & A format will be easiest...

Why are you blogging on such a personal topic?

They say to write about “what you know”. I know Parkinson’s. As such, I don't really find that personal, at least what I've offered you so far. I mean, seriously, you can get more perspective on this by going to the bio section in your local bookstore where you can find some pretty gut-wrenching personal stuff. Makes my stuff pretty dry :-)

Who do you hope to reach with this blog?

Of course, your first target is usually those with Parkinson’s - they are the ones that need the laughs the most. I'm thinking however, that there might be a tougher market to crack. (And maybe one more valuable to you). That is, your support group, and those just outside of your support group. The latter group would include your friends, coworkers, teammates etc., ones who would be rarely called upon for any specific support duties but who would benefit from having an understanding of your situation. They are also the ones who would be very unlikely to take it upon themselves to learn about your disease from the standard relatively depressing, medical site. However, if you dug up a blog entry of mine that you liked, and sent the link, you could say something like:

"check this out - this blog is from some dude who has Parkinson's. He's a bit out in left field but can  be pretty funny from time to time…"

The biggest plus in this situation is not that Blair gets another page view, but that you have given permission for someone in your circle to laugh at Parkinson's. That may open up another level of communication that you didn't have before. Give it a try!

It seems that many of your topics are, well, interesting, to say the least. Comment?
I think if people are going to stick around long enough to absorb your intended message, then providing a few humorous side adventures may help keep them engaged. As much as possible, I do like to start postings with the setting in the broader side of life. I.e., I prefer the stories did not start and end in the petri dish of Parkinson’s.

What do you hope to get out of this? (It looks to be a fair amount of work)
Honestly, in the beginning I wasn’t quite sure why I was doing it. I had an urge to do it but I couldn't clearly identify a reason.  As time goes on, I recognize the following fueling my writing:

It Keeps My Mental LEGO in Order

Parkinson’s or not, like your hard drive, your brain becomes sluggish and lethargic due to sloppy housekeeping and inefficient memory storage practices. The writing process does a wonderful job of re-filing those fleeting thoughts (red), Pulitzer quality blog drafts (yellow), and acceptance speeches (blue) etc.  into a tight lean, mean, blogging machine. Note that the above image and its associated color coding is from the author’s recent MRI.

Talk the Talk - Time To Walk the Walk


I’m no different than the rest of you.  I have this "LAZY" gene that sometimes rears its ugly head and prevents me from getting those "My Body Is a Temple" items done. And let me tell you, when you've got Parkinson's, your list of things that can make a difference is a rather long one. This makes my list more often than not, a "Temple of Doom" list. I’m thinking items like fitness, nutrition, social interaction...  Often I get tired of doing all those things that should be done to take care of Parkinson’s. My hopes are that the blog will keep me honest.

The Satisfaction of Sharing And Contributing

Hopefully readers will take away more than just a chuckle or two. I think there's something for everyone somewhere in my quasi-fictionary tales. You may have to look hard, sometimes reading between the lines - occasionally requiring a Waldo-rian search effort but it's there somewhere!

Are You Worried about being called a Naval-Gazer?

I had already assembled an elaborate defense against this hideous crime - call it a  preemptive strike against those that would throw rocks. Then I sat down and wondered - was this an awards show or a trial? I looked at all of the grayscale definitions and realized that I would be quite pleased to be accused of some half of their crimes of passion and the other half I didn’t really care about. So I suppose I’m resigning myself to a conviction in absentia. Who knows, maybe I’ll end up doing hard time - I hear the writing opportunities are good in the big house. And if I play my cards right, with bad behaviour and all, maybe I could get some solitary.

My editor is looking over my shoulder saying I need a conclusion to tie this entry together. I said it is wound as tight as a middle school teacher at report card time.

Honey? Honey???

Solitude, Cafe Moments, and Finding Your "Pocket Bliss"...

Summer of Love, 1967
Vineland, Ontario

 I sat up, rubbing the nightmares from my eyes. One, two, three, shazam! I squinted them open a  crack - damn! Still double bunked with three other brothers. I pledged to re-commit to my letter campaign to Children's  Services.

 I leapt  to the edge of the bed, put on my "sneaky slippers", and  played hopscotch in slo-mo to the door. I knew the floor like a musical instrument. Each piece of hardwood a key with its own pitch - its ability to creak, annoy, and wake up, or its silence - its ability to whisper, embrace stealth, and to keep a secret.

 The Mission? To make it downstairs to the TV unencumbered by Big Brother (any version). I grabbed Orr and the Bruins from the hockey card collection and locked the door to our second-floor bathroom. The door was secured shut by pulling out the drawer in front of it. It provided, I calculated, about 14 seconds of secured access until a scissors-armed sibling could  scratch and pry it open. With an active defense, one could keep the viking at bay for an unlimited period of blasphemy, threats, and well, pure juvenile entertainment. I have learned since however, that there is no such thing as an "idle" threat. It may be a week later, a year, or decades, but eventually, you will catch them pouring Red Bull in your IV line, or some such shenanigans.

At baseboard level behind the door was the heating register - that glorious provider of toe-warming, navel-gazing comfort. I settled in, back against the cupboard door, feet up against the register - And thought about, absolutely… Nothing.  I wondered, would I have time to do this when I grew up?

The furnace shut off; I got up. I always got up  slightly confused - was the brief period of bliss nullified by the more intense disappointment when the furnace turns off? I recognized these experiences many years later as what I called “coin massage regret”. In brief, the experience that the ending of the coin massage often brought more disappointment - enough to seemingly cancel out the joy experienced during the short massage.

I walked over to the stairs and perched myself on the top step. I could recognize my Mom’s perfume anywhere - I call it “Ode de Cafe”. It seemed like such an easy conclusion. For years as an early riser, the coffee smell - the smell of fresh ground coffee meant "mom was up". The absence of that gorgeous smell meant that mom was either on strike, working to rule, was testing our independence - or all three :-)

She proceeded to sit down in her easy chair and gaze out the window. Her fingers wrapped around the cup like it was Aladdin’s magic lamp.What was she wishing? One can only speculate: "If only all the boys were like Blair" (I repeat, just speculating).

She took the smallest of sips of the brown nectar, her head rose, looking towards the heavens as if to give thanks - then squeezed her eyes shut for a few seconds as if to lock in the sensation. I resisted the urge to check on her to see if she was okay, content that I had witnessed her in this altered state many times before and she had always come out of it okay, in time to make us pancakes.

As expected, Mom did "come out" of her caffeine induced elevated state and made us the most delicious batch of pancakes you can imagine.  I don't recall any specific instructives passed on to me  about "smelling the roses" , or anything relating to solitude by  Mom but there has been clear recognition on my part that I appreciate many of the same things that my mother does - and that many of these involve an inward looking approach that works well with many activities I enjoy.

Don't underestimate the power of the coffee ritual. In  mom's peak moments, she not just enjoys the equivalent of my dopamine moments, I have no doubt that in those moments of bliss in the early mornings, she was planning her battle strategy for the day, whilst enjoying the solitude as much as someone at the cabin lakeside.

Is that what this has been about? The coffee high? Not necessarily. Maybe it is more about the discovery and continual cultivation of those things in life that give us great pleasure and that we can call upon virtually anytime, anyplace. I want to  call this cultivating "pocket bliss". No, we didn't develop any skills nor provide you with any tools to do that, that is beyond the scope of this blog. What is within its scope,  is a reminder to discover those activities that give you great pleasure when you are by yourself, focusing on the activities that require little overhead. I.e., you can take with you when you go :-)

We like to ignore its  instructive reality, but having a neurodegenerative disease like Parkinson's is no different than the aging process on steroids. You are gradually going to have things taken away from you one by one. Your task now as a "pocket bliss" seeker is to seek out and cultivate activities that you can take with you wherever the Parkinson's adventure (or any other adventure for that matter) takes you.

Bon voyage,
Blair