Report from Boot Camp

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  July 2017

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  August 2020 – Still crooked

On September 8, I started what I’m calling “PT Boot Camp” in a concentrated effort to get rid of my tippy posture. I have been fighting this leaning posture since at least 2017. (See photos.) Posture issues are not uncommon among Parkies; mine even has a real medical name – my neurologist refers to it as the “Pisa Syndrome” (get it?). I no longer have a mental image of what is “straight”. In both of these pictures, I thought I was standing up straight.

The “Boot Camp” is the LSVT BIG program, an hour a day, 4 days a week for 4 weeks, plus homework. What is LSVT BIG? The acronym has become somewhat meaningless. It stands for Lee Silverman Vocal Training. Lee Silverman was not the inventor of the technique, but rather the first patient. And the reference to vocal training refers to the original program (LSVT LOUD) for increasing the volume of soft Parkinson’s voices. Both movement and voices tend to get smaller (“bradykinesia”) for Parkies.

LSVT BIG consists of a standard set of exercises, plus the therapist develops customized exercises to address specific tasks that you identify as your problem areas. In my case, standing up straight is the biggie, with some others like standing at the kitchen counter doing meal prep, rolling over in bed, getting out of a car, etc.

I am now through the first week, and do the exercises twice a day. (I suspect I will get a few more exercises.) The rationale for the constant repetition over four weeks is to take advantage of the brain’s neuroplasticity to create new movement patterns. The exercises are deceptively simple although I still have to consult the cheat sheet to do the exercises. There is an emphasis on what I would call “cheerleading” the exercises – shouting out the count, doing them with a lot of energy, using, well, BIG movements.

What’s the results? Back seems generally less painful. However, as I type this, despite my best efforts, I am constantly being tugged to the left as if by a powerful whirlpool. The biggest impacts so far have been to my wrist (from clenching the steering wheel as I drive the 25-mile round trip to the clinic every day) and my wallet ($40 copay each day – ouch). But, kvetching aside, I am hopeful this program will help make a difference in my posture.

YouTube extra: Might as well get warmed up for cheerleading my exercises by watching the 24-time national champions, the University of Kentucky Wildcats. Here they are in 2019.

The search for the Holy Grail continues

“I have not failed. I’ve just found 10,000 ways that won’t work.” 
Thomas Edison on inventing the light bulb

Much has been written about testing for the COVID-19 virus. One test is fast but produces a lot of false negatives. Another test is more accurate but takes two weeks to get results. But at least there is something (the virus itself or the presence of antibodies) to test for. In the case of Parkinson’s disease, there is nothing to test for to measure the presence and progress of the disease. The Holy Grail of Parkinson’s research is a search for a biomarker.

Given this Holy Grail, it was a disappointment to read an article headlined “Alpha-Synuclein…Not Valid Biomarker…..”. Parkinson’s is caused by clumps of alpha-synuclein proteins interfering with the neuron’s recycling process, causing the neuron’s death. Logically, the presence of alpha-synuclein in some sort of tissue or bodily fluid should indicate Parkinson’s- right?

Wrong. Too many false negatives (test says you don’t have PD when you actually do) and false positives (test says you have PD when you don’t.)

Here are results from the Systemic Synuclein Sampling Study , an initiative from The Michael J. Fox Foundation. A total of 59 patients with idiopathic Parkinson’s disease and without dementia were enrolled at six U.S. sites from October 2015 to August 2017. For controls, 21 healthy individuals were also included. 

Blood : No significant difference in alpha-synuclein levels between healthy controls and Parkies.

Saliva: No significant difference in alpha-synuclein levels between healthy controls and Parkies.

Cerebrospinal fluid (CSF) (This is the fluid cushioning your spine and brain.)\: The good news is that alpha-synuclein measurement in CSF correctly identified 87% of the Parkinson’s cohort. The bad news it also identified some 40% of the controls as having Parkinson’s.

Skin tissue: Opposite of CSF. Only one healthy control had test results that were a false positive, but only 24% of Parkies were correctly identified.

Submandibular gland tissue (This is the area below your tongue and yes, it sounds excruiciating to scrape a tissue sample from there!): Again, only one healthy control had a false positive, but only 56% of Parkies were correctly identified.

So…back to the laboratory. The research team believes that measuring toxic alpha-synuclein clumps rather than all forms of alpha-synuclein may provide a better biomarker for the disease. The analogy might be that these inaccurate tests were detecting oats when you really needed to detect oatmeal. Researchers can detect alpha-synuclein clumps right now. They’re called Lewy Bodies. Unfortunately, you have to be dead – they’re only visible in an autopsy. But if there were a way to detect these while the patient is still alive….??? The search for the Holy Grail continues.

YouTube extra: Relive your wasted youth rewatching scenes from Monty Python and the Holy Grail.

The Vaccine Horse Race

Right now, there is a desperate horse race going on to develop a vaccine for COVID-19. The New York Times has confirmed that at least 88 candidates are under active preclinical investigation in laboratories across the world, with 67 of them slated to begin clinical trials before the end of 2021. From the New York Times, here’s the horse race as of 8/31/20:

Do you wonder what all that “Phase 1”, “Phase 3” testing is all about? Do you wonder why vaccine development is taking so long? If, as President Trump so ardently wishes, a vaccine magically came out, say, on October 30, 2020, would you have confidence in taking it? This is a good time to review the drug testing process.

The different phases of testing are from the USFDA (Food and Drug Administration). Other countries presumably have similar testing phases. Before any testing on humans, there is usually animal testing. There has been animal testing for COVID-19 vaccines; animal testing for Parkinson’s drugs is problematic because only humans get Parkinson’s — it has to be simulated for animal testing.

Here are the drug testing phases for human testing:

—Phase 1 – Safety — Typically a small (15-100) number of testers, who usually are healthy, without the disease the drug is directed against. The goals of this phase are to identify side effects and their severity, and the appropriate dosage. This can take several months to a year or more.

—Phase 2 — Efficacy — This is a much larger test, which usually includes both healthy controls and people with the disease. The magic phrase here is “randomized trial”. This is considered the “gold standard” of testing: A tester may randomly get the drug or a placebo; neither tester nor researcher are able to identify which one. Duration can vary from months to years – obviously a test that was less than, say, 6 months would not give very complete information.

—Phase 3 — Further clinical testing — The number of testers is expanded (from perhaps several hundred in Phase 2 to several thousand in Phase 3). Testing continues to be randomized and blind. This phase provides more information on the full range of side effects and efficacy on different patient types (e.g., vary by age, vary by obesity). After this phase, the pharmaceutical company applies for FDA approval.

—Phase 4 — Post-market studies — There may be studies after FDA approval. For instance, the drug may be tested for long-term effectiveness or efficacy versus newer therapies.

When you see the objectives of each phase, you can appreciate why drug testing takes so long. Just recruiting testers takes a lot of time. The Michael J. Fox Foundation has tackled this area for Parkinson’s testing. Sign up for the Fox Trial Finder right now. Already signed up? Check to see if there’s any suitable testing opportunities.

Vaccine developers are trying to speed this testing process along as much as possible, but that vaccine that (watch for it) will magically come out on October 30? Hmmm….think I’ll wait for a bit more testing.

Laura goes to summer camp

j just returned from a splendid summer trip to Eastern Oregon. which felt like going to summer camp. This is the trip where I was going to backpack in the beautiful Eagle Cap Wilderness, but after a trial backpack, quickly decided that I just didn’t have the physical moxie to do a backpack. I am indebted to friend and fellow Parkie Bloggie Carol Clupny who suggested a way to salvage the trip — Our spouses, both eager to do a Real Backpack, would go on the 3-night backpack while Carol and I hung out and day hiked in the Wallowa Lake area.

Spectacular views from Mt.Howard-a tramway does all the heavy lifting- some 4000 feet from Wallowa Lake (in the background) to the top.

Carol’s recumbent e-trike was the hit of the RV park, especially among the younger set. Carol has ridden her tandem bike with her husband in the RAGBRAI (ride across Iowa) 4 times!!

The summer camp started with a visit to Minam River Lodge, a totally rebuilt lodge grandfathered into the middle of the Eagle Cap Wilderness. You can only access the lodge by an 8.5 mile hike or fly in. With Paul carrying most of my clothes and snacks, I was able to make the hike, but I did trip over a rock cleverly camouflaged with trail dust. I was fine but got this attractive black eye.

“Ya shoulda seen the other guy….!”

Ahh…three days of gourmet cuisine and fluffy mattresses in the wilderness. My kind of roughing it. The trail out was uphill, so I decided to use the deposit I had already paid for the aborted backpack trip to instead carry me. Three hours in the saddle was – ah – felt in certain parts of my anatomy the next day. I required help from the wranglers getting on and getting off but I made it .

Yee Haw!

YouTube extra: How can I resist? Patsy Montana singing and yodeling “I want to be a Cowboy’s Sweetheart.” I think I prefer the straight song, but I’m also throwing in the more “Hollywood” version. Either way, she was the first female country singer to have a gold record ( a million sales) – Yee haw!

Blog Lessons

I was recently asked about starting a blog, which caused me to reflect on what I’ve learned from writing this blog since my diagnosis in 2012. I also thought I should review why I started the blog. Is that still why I write?

–First, some humility. When I started “The Magic Trick – Life with Parkinson’s”, I thought I was being soooo trendy and unique – and that I had come up with a unique title. Nah. Turns out everyone’s second cousin starts a blog. And that title? If you Google “magic trick Parkinsons”, you will indeed get my blog but you’ll also get the distinguished fellow in the photo, Sir Michael Parkinson, interviewing a magician. Sir Michael is a British TV interviewer.

–I wondered if I had written more than 100 posts yet. Wow – turns out this is my 203rd published post (since 2012). I do not have the discipline, energy, or time to write every day, or even on a regular basis. I generally get in 1 or 2 posts a month

–My English teacher mother was right: Proofread, proofread, proofread. I cringe at the typos and errors I find in past posts. And my adman dad was also right: He told me whenever you write something and think “how cute! how clever!”….you’d better leave it out.

–Why did I start the blog? I wanted to report on Parkinson’s research, explain the neurological vocabulary, and keep family and friends apprised of my status. Turns out the most important reason for the blog is my own mental health. I feel like I have a bit more control over this wacky disease when I can organize my thoughts in a post.

–I also try very hard to be positive. No one wants to read a dreary complaint.

–Do I have any readers? Yes! Not very many, but I do have thousands of views (well, 2000 or so) each year. I have readers across the English-speaking globe, including Tasmania, Canada, and Miami. I even visited a reader in London. And it’s very satisfying for my ego that I get comments within minutes of publishing.

–But ultimately I’m doing this blog for myself. I enjoy the writing and I think it’s good for my mental health. And I love picking out the YouTube extra!

–Biggest surprise? Many people have commented how humorous the blog is! Gee, I never intended to be funny….

YouTube extra: Yes, of course Sir Michael Parkinson interviewed Sir Michael Caine. And I’ll throw in the theme from Alfie, one of Michael Caine’s earliest (1966) movies. Ah, Burt Bacharach….don’t compose ’em like that any more.

The End of History

That’s my grandmother, Lucy Dilworth Kennedy, on the left holding her first child in approximately 1892.  The picture on the right is about 14 years later after all seven children have been born, including the youngest (in Lucy’s lap), my father, Edmund Dilworth Kennedy.  Do you see how much Lucy aged between these two photos ?

While I am very grateful that Lucy kept making babies until my father arrived, she had no choice in the matter.   It would be another eight years, in 1914,  before Margaret Sanger was arrested for starting in Brooklyn the country’s first birth control clinic.   Margaret Sanger fought for contraceptives all her life, founded Planned Parenthood, and died in 1966 just as “the Pill” was coming to market, transforming women’s role in society.  I  was able to choose not to have children because reliable contraception was available to me.   Would that have happened without Margaret Sanger?

Given contraception’s impact on society, I would consider Margaret Sanger to be  a major historical figure of the 20th century.  Yet she is being written out of history – not  by some radical anti-contraception group, but by the very organization she  founded – Planned Parenthood.  On July 21, the organization announced its intention to remove Margaret Sanger’s name from their Manhattan clinic.

Why?   Planned Parenthood has succumbed to the latest political fashion – applying  an impossible political purity filter of today’s acceptable opinions to historical figures with no historical context or nuance.  Margaret Sanger, at some point in her long and controversial life, expressed  support for eugenics, a long-discarded theory about improving the human race through selective breeding, a theory popular among both liberal and conservative intelligentsia in the 1920s.  Yep, definitely cringe worthy – but worth discarding recognition of all her accomplishments?  I don’t think so.

Similarly, the Sierra Club is discarding its founder, John Muir, and Princeton University is discarding its former chancellor and president of the United States, Woodrow Wilson.  Apparently Wilson’s leadership in the first attempt at global peace (the League of Nations) isn’t worth recognition since he’s guilty of racist comments.   Thomas Jefferson?  That revolutionary document he wrote called The Declaration of Independence?  Eh – pull down his statue– like most landed gentry in 18th century Virginia, he owned slaves.

Why are we so intent on discarding history?  How will we be judged by the next generation?  Oh – I guess we don’t need to worry about that future judgment – since we will have flunked the future’s purity test and our contributions will have already been discarded.

March of the Zombies

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.

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.

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.

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.

The Volkswagen and the wool suit

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.

Call for Doctor Jazz!

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”.