Wednesday, 30 April 2014

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."

wordlef.PNGOf 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.)

Sunday, 6 April 2014

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.
 - 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…