March of the Zombies

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Laura and her Sherpa-For-Life

Gosh, here it is almost the Fourth of July.  I suddenly realized that the backpack I had contemplated way back in January was now only a month away.  Could I really do a 10-mile backpack in Oregon’s beautiful Eagle Cap Wilderness?  Could I really do multiple days of day hikes?  Could I really sleep on the ground four nights in a row?

I had hired a mule and wrangler in January and paid a deposit.  The balance was due (where was that fine print…?) oh yes, 30 days before departure.  Departure was (when did I set this?) August 6, so that means – gulp – I had to make the call by July 6.

Quick! Time for a trial backpack. I looked over every hike on the Washington Trails Association website: too far, too steep, too muddy, too buggy, etc., etc.  Finally selected one/  Stuffed the backpack and did a couple walks around the neighborhood – hey, maybe I can do this.  Loaded the backpack in the car and then looked out and – it was raining.  And there was a suspicious puddle under Paul’s backpack.  Whoops- the lid had come off his water bottle, and the inside of his pack was well soaked. So we deferred one day.  Picked a new hike that I thought would be easier – the Ingalls Creek hike which,  purely by coincidence,  happens to be what we call “the scene of the crime”:  where we mutually proposed to each other on a backpack some 28 years ago.

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Ingalls Creek- the scene of  the crime.

With the usual summer construction delays, it took us some three hours to get to the trailhead.   This is not a irrelevant comment – that long in a car (even with  breaks)  means I was already stiff and sore before I started down the trail.  My body was reminding me that I had done a 3-mile trial with the pack around the neighborhood the day before.

Finally, we hoisted the packs on our backs and off we went.  Immediately I turned into a zombie.  Even though the trail had a very mild grade, e-v-e-r-y–s-t-e-p–w-a-s–a-g-o-n-y.  The pack weighed a bit more than 22 pounds, not a lot for a backpack, and my Sherpa-For-Life was carrying tent, water filter, cooking pot, stove, and fuel. But I felt like I was carrying a boulder which rested entirely on my right butt and right thigh.  I would trudge 4 or 5 steps and then have to stop to rest.  When I finally staggered into a clearing and had a little lunch, I was able to check my watch:  it had taken me nearly an hour to go…about a half mile.

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I still get a reward: The legendary onion rings at Zeke’s Drive-in.

Pretty easy to make the call – neither this trial backpack nor the one in August were going to happen.  Yes, I was disappointed, but frankly mostly I was relieved.  I’m still going to Eagle Cap, just need to do some rethinking.  I’ll need to focus on being able to cover the 8 miles to Minam River Lodge, another destination in the area.  Paul and I will be walking in but don’t need to bring bedding or food.  I’ll still have about  10 pounds in clothes and personal items (it’s amazing how much your clothes weigh).  But Paul thinks he may be able to carry some of that weight if I turn into a  zombie again.

YouTube extra:   Yes, there are actually musical selections on YouTube called “March of the Zombies”, but I like this scene from The Wizard of Oz better.  I still get scared at all the Wicked Witch of the West scenes.

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Dancing in Sanskrit

Oh, ugh, what are these exceptionally awkward photos?  This is Laura taking a beginning ballet class, scowling at the Zoom-powered instruction on her little laptop.  Most of the time, I turn off the video so that the instructor (Mark Haim, a real dancer and dance instructor) can’t see me.

I harbor no illusions of doing real live ballet, but this course came floating by in my email and I thought it would be a helpful neurological exercise.  I’ve never been a good kinesthetic learner – I like to say I have been taught to tie a bowline knot at least 72 times.  Now with the Parkinson’s, my communication between body and brain is really hosed up.  As I write this, I am unable to sit comfortably.  I keep leaning over to the left and my tense calves are being filled with buckshot by Evil Posture Genies.

The ballet class is now over and I am mulling the possibility of taking another round of six lessons.  I have found the ballet frustrating, but then, I have to remember that I found skiing and swing dancing frustrating too at the beginning, and now I do those two activities adequately and have fun.   I’ve regretfully had to largely give up downhill skiing because there are too many tasks going on as I hurtle myself down a slippery, hilly slope for my multi-tasking-impaired brain to handle comfortably.

There is of course no physical danger with ballet, and at this beginning stage, not even much multi-tasking – mostly just moving my legs.  But I still find following the routine (much less making it look good) as impenetrable as if I were learning Sanskrit.

Dancing has at least made me empathetic about folks who are poor readers and spellers.    Because I’ve been an excellent reader and speller since before kindergarten, I’ve frankly always had trouble understanding how some people can reach adulthood and barely be able to read and/or spell.  But now I can acknowledge that, just as I have never exercised and developed the dance “muscle memory”,  folks who are semi-literate may have not had the opportunities to develop the textual learning “muscles”.  It’s always struck me as bizarre that reading teachers continue to argue for the One True Way to teach reading, rather than acknowledge multiple tools are needed.

As I stumble through the ballet, I have to remind myself that developing these muscles is not as hopeless as (say) my understanding Sanskrit.  After all, I can read and retain very complicated choral music –  but then I’ve been singing since I was in first grade –  this muscle memory is very developed.  (I know I’ve sung since first grade, because I remember that we routinely sang with gusto a standard patriotic song: “My Country, T-I-C”.  I always wondered what T-I-C stood for.)

YouTube Extra:  Listen to Aretha proclaim “From every mountainside, Let freedom ring” at Barack Obama’s inauguration.  I was in that audience, way, way back beyond the Washington Monument but I don’t remember this moment.  Oh, we need this kind of hope and optimism today.

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The Volkswagen and the wool suit

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The Kennedy kids by an early Beetle in 1964

I have a confession to make — I’ve never been too good at charitable giving.   When I add up donations at tax time, I’m always embarrassed at the total amount.  But these are extraordinary times, with 40 million people out of work.  Time to up my game.  Courtesy of the US Congress, I was presented with a great opportunity to donate – those silly $1200 stimulus checks.  Silly, because for the folks who need the check,  $1200 is gone in a heartbeat.  Silly, because there was virtually no means test for the check – why are my husband and I, who are able to afford now-cancelled trips abroad, getting these checks?

So where should I pass on the money?  The first donation was pretty straightforward.  My city of 50,000 is big enough to have urban problems but too small to have much resources.  A consortium of churches runs services (no shelter) for the homeless.  The lines are only getting longer for the weekly free meal.  Inexplicably, the city will be tossing out the organization from their rent-subsidized location in a couple months.  Okay, first check written.

Second check was an investment in a young woman graduating from college.   Today, the amount wouldn’t come anywhere close to a  used car, but I was remembering that each of the Kennedy kids was passed down a Volkswagen Beetle upon college graduation.   That financial boost from my folks eased things enough for me that I was able to save some money  early on – it made all the difference for me.   And the wool suit?  For my first real professional job, my mom insisted on buying me a tailored wool suit.  It looked expensive – because it was.  I felt  like a million dollars when I marched into the newspaper where I had been a clerk with my first substantial press release – which they published.  I hoped a little extra money for this young woman might be the equivalent of the VW or at least the suit – but I believe it’s going to be swallowed up by tuition.   That’s OK, of course – her call.

Third check – I was appalled at the murder of George Floyd in Minneapolis, but I was equally appalled that legitimate peaceful protests were hijacked into riots.   The local suburban shopping area was looted.   The Chamber of Commerce already had a fund set up for businesses struggling to stay afloat in the wake of COVID-19 – this senseless violence is yet another blow to the fragile economy.  I added to the fund, with a note to the director that I hoped the money might go towards clean up costs and deductibles of the looted businesses.  Insurance never covers everything.

And the last check — it occurs to me that all those entities that needed money before the pandemic — say, the Girl Scouts or the Seattle Opera or the American Cancer Society — still need the money.  The world has turned upside down but so many organizations  are still providing services that need to be funded.  So I thought I’d send some money to MIchael J. Fox Foundation.  The research goes on.   Check out their focused resesarch strategy  and major research initiatives.

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Call for Doctor Jazz!

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Jelly Roll Morton, 1915

My blog posts have been pretty gloomy lately.  I reflected upon this as I was bopping around the living room the other morning,  doing my exercises and belting out one of my traditional jazz favorites, ” Call for Doctor Jazz!”  It is physically impossible to be gloomy and listen (sing!) to ragtime at the same time.

Singing about Doctor Jazz made me think how grateful I am for my own special doctor, the neurologist I will be visiting in about a week.  I’m not expecting miracles but I suspect much of my current pains could be improved with an adjustment to medication.

Also, May 18 was the 40th anniversary of Mt. St. Helen’s eruption.  Forty years is both a lengthy  time (I moved to Seattle the next year, when the wheat field of eastern Washington were still thick with ash.) and an eyeblink, geologically speaking.   The mammoth scale of a volcanic eruption makes my Parkie challenges seem trivial.

And then, with perfect timing, I got these encouraging words from fellow blogger Carol Clupny  in her latest post, “Show Up!”.  She says, ” I developed some “practices” during the pandemic. ….. The biggest tool was to keep to a routine…..But the most important practice was that I “showed up”. By “showing up” for my day no matter how bad I felt, I experienced some relief from my issues and got something accomplished. …”

Thanks, Carol, for the reminder that I am not going to manage my Parkinson’s symptoms unless I show up.

YouTube Extra:  Although “Dr. Jazz” is a jazz standard in the repertoire of most trad jazz bands, I had trouble finding a version that had a good arrangement and good singing.  So I went back to the source:  Jelly Roll Morton and his Red Hot Peppers in 1926.   I like his version better than the one from the composer, Joe “King” Oliver, a cornet player and bandleader of the 1920s.  Alas, neither Jelly Roll nor King can sing, although this is a tune best sung (as one record cover puts it) “after swallowing five pounds of gravel”.

 

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See ya in the funny papers

I’ve been hanging out with a  pretty bad crew lately – the kind of dastardly bad guys you’d see in the old-fashioned comics.  Here’s the lineup on the bad hombres:

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–All this time, I thought Al Capp’s creation, Li’l  Abner, was such a nice boy.  I thought  it was funny that he made his living testing mattresses.  Now I’m having so much trouble sleeping that I’ve tested up to five different mattresses in one night.  Li’l Abner and mattresses look a lot more sinister now.  (And Daisy Mae has always looked…cold.   Get the poor girl a sweater!)

 

–I continue to walk like the Bride of Franktein.  Hard to correct my leaning-forward posture.Bride_Frankenstein_1935_21-1487460005-726x388

Dick Tracy-Where’s   Dick  Tracy when I need him?  Every night I am tortured by thugs pouring concrete down my calves.  My calves are tighter than they ever have been and now I’m starting to get that sensation during the day.

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–I wobble around like a Bozo the Clown doll with my increased dyskinesia.Hamill-Joker_3

And there’s always a Joker.    Like a few nights ago, I finally got to sleep out on the sofa.  I heard my husband very distinctly say, ” There’s someone at the door.”  I jumped out of bed only to hear the dulcet tones of my beloved’s snoring.  Guess it was the Joker.

YouTube extra: While we’re on the superhero/dastardly villains theme,  I couldn’t resist The Green Hornet Theme.  Cheesy 1960s fashions in the opening credits are a bonus to Al Hirt’s fabulous trumpet playing.

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The P-Q-R-S-T of Pain

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Yesterday I watched a webinar about pain in Parkinson’s Disease, well delivered by Dr. Pravin Khemani,  a neurologist at Swedish Medical Center here in Seattle.  I’m sure the local chapter of the APDA that sponsored it will be putting his talk on their website/ YouTube channel.

I wanted to focus on a great takeaway from his talk that certainly sounds like it would help with communication with your doctor – whether or not your pain is due to Parkinson’s.

The takeaway is one of those diagnostic mnemonics.  When I Googled PQRST, sure enough up pops “PQRST Pain”, complete with many Powerpoint slides from many sources.  Like most mnemonics, there are variations on what exactly the letters stand for.  Here’s Dr. Khemanii’s version:

P recipitating –  What precipitates the pain?  A particular movement?

Q uality — What is the quality of the pain?  dull, sharp, icy, etc.

R adiation  Where does pain radiate from?  Does one side hurt more than the other?  (Parkies tend to have one-sided motor symptoms.)

S ite– Where is pain located?

S everity – On a scale of 1 to 10, what’s the severity of the pain?
(I always wonder how valid this is, since it’s so subjective.  You have people with a papercut who whine their pain is a  10, while others as they’re pulling the hatchet out of their leg “don’t want to make a fuss” and call it “3”.

T iming  When  did pain start?

T reatment – What treatments  worked or didn’t work?

T heory – I added this one. Often the patient has a theory what’s causing the pain.  If considered at all, use appropriately – the doctor probably doesn’t want to spend time on your theory that the pain is due to your neighbor’s high-pitched yapping dog.

How would you use this mnemonic?  I suspect it’s intended more for the doctor and most physicians would be startled to have a patient use it.  But on the other hand, I consider it’s a waste of the doctor’s time for the patient to just go in and say “it hurts like hell, doc”.  This mnemonic offers a structured way for the patient to better define the pain before the doctor’s appointment.  I typically give the doctor  notes regarding topics I want to cover, current state of symptoms, etc.  It’s time for my neurologist notes and I’ll use this mnemonic as a mental checklist when I’m describing the latest pains.

Posted in Miscellaneous, Parkinson's Basics, Treatment | 3 Comments

Beyond the Blue Horizon

IMG_20200314_174327.jpgI’m getting to be an expert at what it looks like Beyond the Blue Horizon.   I can hardly remember the long-ago days when I slept through the night.  Over the past eight years of sleeping with Dr. Parkinson, I’ve gone from getting up once or twice a night to routinely getting up 3-4 times a night.  I can look at the darkness/light Beyond the Blue Horizon and  pretty well estimate what time it is, even before I succumb to temptation and look at the clock.

The main reason for the frequent waking is that I am having increasing difficulty turning over in bed.   The choreography to roll over is so convoluted and elaborate that it inevitably wakes me up.  I wrote about difficulty moving in bed in “Roll Over, Beethoven” way back in July 2018.  What’s different now  is that in addition to trouble rolling over, Mafia hoodlums appear to have been dispatched to pour concrete into my legs.   I’ve had muscle rigidity before but this is much worse.  Imagine laying on your back – this should be the comfortable position  when all else fails, right?   Nope.   My calves and feet are too tight, and I can’t relax them.  Even scarier– for the first time ever, I’m starting to freeze – I can’t move (briefly) .

So, what’s the fix?  I’ve been experimenting with different pillow arrangements, additional drug doses,  exercises,  and a special Mexican tranquilizer (chocolate milk and Kahlua).  Lots of  yawning , but no magic bullet.  I have to have patience, and remind myself of the many people in these bizarre times  who are far, far Beyond the Blue Horizon —  lost their job, or a loved one, or the certainty of getting a latte at the corner Starbucks or toilet paper at the Safeway.

And I have to remind myself of other Parkies who have lived longer than I have with the disease, and continue to fight the good fight of  staying positive.  I’ve just had the inspiration of reading haunting poetry from two poetic Parkies.   One is fellow blogger Carol Clupny in her Good Friday post.  The other is a friend of hers, Wayne Gilbert, who wrote a poem dedicated to Carol  after a middle-of-the-night conversation in which, as Carol puts it: “So many of my Parkinsons friends have these dark nights.”   Both poets use language exquisitely; here’s one of the phrases from Wayne’s poetry that I have tucked away:
I want to be the kind of person who’s trapped in a cave, lights a torch, figures out how to draw sacred figures on the walls .

YouTube extra:   Why the phrase “Beyond the Blue Horizon”?  This lovely 1930s song, popularized by Jeanette MacDonald in one of the first talkies “Monte Carlo” (1930), is on my brain since I have been working on arranging it.  Warm up the Victrola, put on  your dancing shoes, and fox trot around the room – remember: “Beyond the Blue Horizon lies a rising sun!”`

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Fun and Games with Parkies

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Laura dancing at 2013 WPC

We Parkies are a fun-loving lot – maybe it’s because we “shake, rattle, and roll” so naturally.   Here is your chance to join in the fun.  The World Parkinson Coalition just sent me this announcement for this sing-a-long, starting Thursday, April 9 (this week!) and happening weekly through the end of April:

WPC Parkinson Sing-A-Long

The WPC Choir Director, Judi Spencer, will be gathering everyone from the past choirs along with hundreds of other folks, to join her in a virtual sing-a-long on, you guessed it, Zoom. We’ll hold these virtual sing-a-longs for four weeks, on each Thursday starting April 9. You can view our press release HERE. The webpage with the sign up details is HERE.

We’ll alternate the times on Thursdays from 1PM ET and 5PM ET.

We are doing this because, well, why not? We love to sing, singing is good for our voices, and so many of us are quarantined at home and could really use an uplifting sing-a-long and chance to connect with the world for a bit.

Imagine – a global Zoom call with 500 people on it!

To get you in the right mood, here’s an oldie but goodie from 1971 about global singing, long before the technology existed.  Even if you’re not a baby boomer, you just can’t resist singing along!

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Exercise in a Time of Plague

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Laura’s view of exercise – with apologies to Hieronymous Bosch.

Regular readers of this blog know what a fan I am of exercise – that is to say, not.  But despite the disruptions and shutdowns caused by the coronavirus scourge, there are plenty of exercise programs out there that we Parkies can “enjoy” in the comfort of your own home.

Here are three I’ve participated in, with links. costs, and other details:

–I just started today a free program exploring the Feldenkreis method to improve flexibility and balance.  This is sponsored by Northwest Parkinson’s Foundation and taught by Irene Pasternak, MA.  Tuesdays and Thursdays, 10:30-11:15 through April 30.  Yes, the class is free, but you do need to register.  Click on the link for more info and to register.

—Nate Coomer is the Energizer Bunny and physical therapist behind the  Parkinson’s Fitness Project. and the “Daily Dose” program.    This has always been a subscription video program ,but he has expanded his live feeds from a couple a week to six.  All the classes are also on video so you can look at them anytime.  Offerings include High Intensity Interval Training, Strength Training, Yoga,  Tai Kwan Do, and other classes.   You can try out the first month for free (yay!), then it’s a $29/month subscription after that.  The electron fairies magically extract this from my credit card every month.  Click here for more info and to try  the 30-day free trial.

–And last but definitely not least is Denise Geroux, the personal trainer I’ve worked with off and on for the last few years.  Through her company Shizendo Fitness, she has set  up live video workouts during the lockdown.  (Recorded workouts are available too. )  Denise works with a number of Parkie and/or older clients, but her main business is training folks for triathlons.  Her workouts are not quite the  “take-no-prisoners” affairs I was afraid they would be, but she does make me sweat.  She emphasizes going at your own pace and says “All levels are welcome”.  Her pitch: ” High energy, safe form, good fun”.   Her drop-in fee for workouts is $20/session; packages and financial arrangements are available and the first workout is complimentary!  Workouts are M, W, F, Sat at 9:30.  For more info and to get links to the workouts, best way to reach Coach Denise is email: shizendo@aol.com.

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What Happened to those Ruby Slippers?

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Did you ever wonder what happens to the ruby slippers in The Wizard of Oz?   In the movie, they just disappear when Dorothy wakes up in Kansas.  In L. Frank Baum’s original book, The Wonderful Wizard of Oz, Dorothy’s magic slippers go “flying off over the desert” as she is whisked back to Kansas.

I was thinking about those ruby slippers last week as I was literally “flying over the desert” (and other landforms) on two flights to escape from Costa Rica.   Up till now, my metaphorical ruby slippers have carried me on wonderful trips all over the world.  My attitude has been to ride the “Carpe Diem” travel adventure train as much as I can  before the Parkinson’s makes traveling unrealistic .

This particular  trip was a small-boat cruise by the UnCruise Adventures folks, going along the Pacific Coast of Costa Rica and Panama then through the Panama Canal.  Alas, less than halfway through the trip, we came to the border with Panama and learned that the government of Panama had – an hour earlier – decided to turn away all cruise ships.  The facts that the ship had a small number of passengers (35) and had no illnesses aboard made no difference.

So we all scrambled and got revised tickets back to Seattle from San Jose, the only international airport in Costa Rica.  Paul and I felt very lucky to not only be  able to procure tickets at the last minute, but not pay a fortune for them or have an exceptionally lengthy flight.  Our luck continued when my sister spotted a report that, shortly after we passed through, the International section of  the Atlanta airport was closed for cleaning after a TSA agent tested positive.  Image result for Flying Dutchman

And as of 3/20/20, CNN reported that at least 30 cruise ships were still wandering the globe, like the legendary Flying Dutchman, searching for a port that will let them dock.

We are home, the refrigerator is full, the freezer is full, and we feel very lucky.  We are still hoping we will be able to get another pair of ruby slippers for future travel.

Our heart goes out to all those who have lost their jobs and/or caught the coronavirus.  I end this post with this encouraging, unattributed quote reported by (of all sources!) Gordon White, the editor of TruckCamper Magazine:

“I know this. When this ends – AND IT WILL – every game will sell out, every restaurant will have a 2-hour wait, every kid will be glad to be in school, everyone will love their job, the stock market will skyrocket, every other house will get TP’d, and we’ll all embrace and shake hands. That’s gonna be a pretty good day. Hang in there, World.”

 

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