How many neurologists are in the West Indies?

How many neurologists are in the West Indies?
This sounds like the opening line of a gag (and no, I have no idea how many neurologists are needed to change a light bulb).  But I have been seriously wondering about neurologist resources after a trip to the Caribbean.  I was stunned at the fragility of the infrastructure, of which one part is the medical infrastructure.   From the Bahamas down to Curacao, there live more than 44 million people, three times as many as the Pacific NW (WA, OR, ID, MT, AK) .  You have to assume among the Caribbean population are people afflicted with Parkinson’s, Alzheimer’s, epilepsy, multiple sclerosis, cranial injuries, and all the myriad brain ailments neurologists treat.

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Damage is still evident to the  islands from back-to-back hurricanes (Irma and Marie) in September 2017.  But this is a  part of the world that had a fragile infrastructure even before the hurricanes.  For starters:  Water.  I was reminded of why castaways are always landing on “desert” islands.   Desert can mean “deserted” but in the West Indies desert means “dry”.   I had this romantic jungle-y “Pirates of the Caribbean” image in my mind, and was surprised to find how dry and scrubby the islands were – cactus everywhere!  Turns out the West Indies is a hotbed (pardon the pun) of desalination plants (such as the one pictured in St. Martin)..  I can vouch the water tastes fine.  But this is a far more power-intensive way to get your water than from the heavens.

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Further challenging the environment in the Caribbean is the legacy of sugar cane.  18th century Europeans had no concept of soil management or crop rotation and quickly depleted  what little nutrients the volcanic soil held.  They also chopped down the tropical hardwoods (think mahogany) to use for all those wooden sailing ships.  So, between the lack of water and the poor soil, not a promising agricultural location: I saw one small commercial garden, no farms, not even backyard gardens.  This is despite the fact that nearly all food must be shipped in. All the food on the cruise I was on came from Miami.

I was surprised to learn that sugar cane has not been grown on an economic basis since the 1840s.  Why?   Most countries emancipated slaves in the 1840s – without slaves, the sugar cane no  longer made economic sense.  So with no cash crop, no agriculture, no industry, what is the Caribbean economy based on?  What pays for the infrastructure?  The obvious answer is tourism — but keep in mind most tourists arrive by cruise ship – so their hotel and (most) restaurant dollars are…on the ship. We stayed a number of nights in St. Martin, and finding dinner was a challenge.  Most restaurants closed at night after the cruise ship passengers were back on board.

Another challenge to establishing and maintaining infrastructure is government — both too much and too little.  There is no “Union of West Indies”.  Instead, there are  more than 7,000 individual islands in an approximately 1-million-square-mile region. There are 13 sovereign island nations and 12 dependent territories,   The tiny island of Sint Maarten/St. Martin where we stayed (pre-hurricane population of about 77,000)  had the absurd comic opera situation of half the island being Dutch and half being French.   Since 2010, the Dutch part has almost full autonomy from the Netherlands while the French part remains an “overseas collective” of France.   How do you coordinate rebuilding infrastructure with a governmental structure(s) like this?

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And at least one speech therapist in St. Barth.

So back to the original question: How many neurologists are there in the West Indies?  Answer:  No idea.  Some Google searching found neurologists in Barbados, Jamaica, Puerto Rico (even a Puerto Rico Academy of Neurology!) including a Puerto Rico VA hospital.  But it’s a safe bet that there’s not very many – not enough neurologists to serve 44 million people.

 

 

 

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Medicare Muddle

afpa flyer headline - copyAlthough the mid-term elections are over,  I received a political flyer recently.  The flyer was full of photos of worried senior citizens with the scary headline shown above.  OK, you have my attention – what’s this all about?

worried senior

The inevitable worried senior shot.

I read the flyer carefully, but I couldn’t figure out what the alarm was about.  However, my sniff-o-meter was going off.  Here’s some language from the flyer, see what you start to suspect:

-“Middlemen and HHS bureaucrats will interfere with doctors’ decisions about your health care.”
–“Use of “Step Therapy” or  “Fail First” policies will deny patients immediate access to the most effective treatment for their illness.”
–“Unprecedented price fixing for medicine based on deeply flawed European health systems, stifling America’s leadership in cancer research and innovation.”

Do you have the same suspicion I did?  Another hint: The flyer is “Paid for by Alliance for Patient Access” (AfPA).  Chances are, when the advocacy organization has a vague, almost-sounds-like-grass-roots name, it’s a corporate lobby.  Yup, the flyer was paid for by Big Pharma.

I looked up “Alliance for Patient Access” and came across an excellent piece of reporting by Mary Chris Jaklevic in the Health News Report.  She characterized AfPA as an “organization (which) consistently opposes measures to rein ….in…skyrocketing prescription drug costs..”, adding, “rarely are its deep pharmaceutical connections called out.”  AfPA is financially supported by nearly 30 pharmaceutical companies.

I looked up “Step Therapy” and it is indeed what I suspected:  As of January 1, 2019, Medicare Advantage insurance plans have the option of requiring  patients to start with a less expensive drug for their condition before they can move up a “step” to a more expensive drug.  In return, these insurance plans  are required to pass on savings to beneficiaries (that’s us).  Note step therapy is an option, not a requirement for Medicare Advantage plans.  Incredibly to me,  until this year, Medicare regulations prohibited step therapy ;  also, prior authorization by the insurance company was discouraged until this year.  These both strike me as prudent ways to control drug costs.

So what does Trump have to do with these Medicare changes?  He is actually trying to honor a campaign promise to lower drug prices and the above regulatory changes are part of that mission.  Much to my astonishment, he signed on 10/11/18 what sounds like a progressive piece of legislation — two actually, the awkwardly named Know the Lowest Price Act and the Patients’ Right to Know Drug Prices Act.    These acts do away with pharmacy “gag” clauses — pharmacy benefits managers contracted by insurance companies sometimes use “gag” clauses to prevent pharmacists from informing patients if a prescription would be cheaper if purchased out-of-pocket rather than through their health insurance plan.

On October 25, 2018, Trump unveiled a plan to overhaul how Medicare pays for certain drugs.  The plan includes expanding the drug price negotiation already in place for Medicare Part D (outpatient drugs) to Medicare Part B (inpatient drugs), and benchmarking US drug prices against prices in foreign countries.  Trump said, “For decades, other countries have rigged the system so American patients are charged much more …for the exact same drug,”  As usual, Trump has it backwards: other countries aren’t “rigging the system” – they have systems to control drug prices.  Americans have no system.  Because Big Pharma has lobbied against price controls in the lucrative US market,  Americans are charged much more.

Two caveats for this blogpost:  1) Medicare is a complicated subject and I’m not a professional reporter; take this content with a grain of salt, and follow the links for more information.
2) It’s easy to protest against price, um,  “protection” by Big Pharma, but at the same time, I have to be nice to them — improvements in Parkinson’s drugs largely come from these companies.

YouTube extra — A post on Medicare needs to be balanced with some levity from the only doctor I want to see: “Hello Central, give me Doctor Jazz!”

 

 

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Adventures with DaTscans

In the category of “Be careful what you wish for” is the Canadian medical system.  We Yanks cast envious glances at our friends across the border with their affordable health care.  But there’s always a catch –  specialized therapies can be as limited by bureaucracy in Canada as they are by cost in the US.  I have been following the slow progress of my fellow Parkinson’s blogger, Natasha McCarthy, to obtain approval for Deep Brain Stimulation.  She lives in Prince Edward Island and has gone through several hurdles to get approval for DBS.  I think she’s up to some 18 months now, and her journey is further slowed by living in the rural Canadian Maritimes with limited access to specialized medical resources.  In  contrast, a friend here in Seattle got DBS surgery a couple months after she decided to go for it and had her choice of 3-4 hospitals to evaluate.

The latest hurdle Natasha went through (right before Christmas) is something called “DaTscan”.  I’ll quote from her Facebook entries:
12/20/18: “…to get approved for Deep Brain Stimulation.  DaTscan at 7:45am tomorrow!  This scan’s never been done in Atlantic Canada for this purpose before. go figure. I’m the first due to my ‘young’ age..” [Natasha has early onset PD and is in her early 40s.]

Examples of DaTscans.  Patient on left has “normal” scan, even with essential tremors.  Patient on right has Parkinsonisms.

I wasn’t familiar with “DaTscan” so I turned to my research assistant, Dr. Google.  Turns out to be a radiological test (like, say, PET scans or MRIs) approved by FDA in 2011 for Parkinson’s.   After  the PD patient receives an injection of a radiopharmaceutical agent ((Ioflupane I 123), the compound can be visualized in the brain by a special detector called a gamma camera.   To add to your supply of fun medical jargon, this is called SPECT imaging (single-photon emission computed tomography).  This scan measures something called the dopamine transporter (DaT) and can reveal changes in brain chemistry, such as a decrease in dopamine, which may help identify Parkinson’s disease and other kinds of parkinsonisms.

OMG!   This sounds like a  biomarker for Parkinson’s!   Well, no, not quite.  The  Parkinson’s Foundation medical blog comments: “… the DaT test is over-used in clinical practice, and is only FDA-approved to distinguish potential Parkinson’s disease from essential tremors [a different condition that has tremors like PD, but does not present a decline in dopamine].  In fact, the test only tells the clinician if there is an abnormality in the dopamine transporter, and does not actually diagnose Parkinson’s disease…”   The scan is qualitative and visual, so like most other radiological scans, it requires an experienced expert to correctly interpret it.  The scans above are PET scans; the  “Post” is after the PD patient took Levodopa.

I asked Natasha why she was receiving the DaTscan, since there is no question about her Parkinson’s diagnosis.  Natasha responded “…Progression [of PD]..?.  And rule out dopamine resistant dystonia which apparently is a rare form of PD that DBS doesn’t work for…?

I did some further consulting with Dr. Google and learned that DaTscan is one tool for evaluating the responsiveness of motor symptoms to dopaminergic medication which can predict the potential outcome of DBS surgery.

After taking the trace liquid, Natasha found out she had not received clear communications to dilute the liquid:
12/22/18: “…the last test on the road to a final answer on if I’ll get approved for DBS or not sure was a doozy.  Was given the wrong instructions on the solution I had to drink…Not only tasted horrific but burned the hell out of my throat and everywhere it touched.  I could barely swallow, felt like my throat was closing over and I had just swallowed razor blades. …The team [at the hospital] was being trained by a lady who’s travelling the country doing so.  They were thrilled & excited that I was the first person ever in Atlantic Canada to get this injection and have this type of scan….My enthusiasm for being the guinea pig was not the level theirs was…

Natasha’s description of her reaction is far more graphic than the standard safety information which rather blandly says under “Adverse Reactions”: “In postmarketing experience, hypersensitivity reactions and injection-site pain have been reported.”

One more entry from Natasha’s Facebook feed:   12/20/18: “Mid January my case will go to the [hospital] round table where ..Neuromodulation team…will review the current cases and give a final Yes or No answer if I get the surgery…”  Beam your positive thoughts northward to Natasha.

 

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“I Fight It”

As has been reported previously in this blog, I am increasingly looking like a walking question mark.  So it was not surprising when I was recently asked if I had scoliosis (that is, curvature of the spine).  I  told my friend that no, the stooped, twisted posture was a, ummm, gift from my Parkinson’s diagnosis.  She told me she asked because she herself had dealt with scoliosis for many years.  I asked her what she did about the scoliosis, expecting that I would hear about some new exercise.  Instead, she responded, simply: “I fight it.”

I think that will  be my mantra for the new year:  “I fight it.”  This year that is just ending has been challenging as I have “fallen off the cliff” and moved on to the next stage of Parkinson’s disease.   The honeymoon is clearly over.

Cinderella-and-Fairy-Godmother-cinderella-40447446-500-313I have three therapeutic avenues to deal with Parkinson’s symptoms.  One is medication.  I have now gone through eleven different combinations since the beginning of the year, and I’m about to try one more tweak.  I started this experimentation with a blog about my pharmaceutical fairy godmother (“Bibbidi Bobbidi Boo”).  Alas, there is no magic wand.  And as my neurologist put it, my worst symptom (crooked posture) is “not helped very much  by pharmaceutical therapy”.

imgcache1.84092672 - Copy (2)Therapy #2 is exercise.  There’s an old gag that the definition of insanity is doing the same thing and expecting different results.  I think in my case it’s not doing the same thing and expecting different results.  I have returned to the personal trainer I worked with last year on correcting my posture.   I rush home after each session and take detailed notes before I forget her expensive advice.  Yesterday, I read through my notes from last year’s sessions.  Hmmm….they sound a lot like my notes from….this year’s sessions.   And hmmm….I’m doing some of her advice, but not all, and not very consistently or intensely.   I think this is the biggest area to apply the mantra:  “I fight it.”

IMG_20180424_200539~2 Therapy #3 is….what do I call it?  Mental health challenges, I guess.  An example is swing dance lessons.  I skipped the last two weeks because my back was too sore.  But this week I was determined to show up at the lesson, since this is my last opportunity to practice before the dance party on New Years Eve.  Tonight, the dance instructor  gave me some invaluable tips, pointing out that when I turned under my partner’s arm, my frame tended to collapse, and I was looking at the floor, not at my partner.  Gosh, you mean my posture is crooked? What a surprise!  And you know what I’m going to do about my crooked posture at that New Year’s dance party?  “I fight it.”

 

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Pinky’s Passion

Pat Erickson

Pat “Pinky” Erickson, complete with pink hair and pink festive hat

A quick shoutout to Pat “Pinky” Erickson.  She and her family have raised around half a million dollars over the last ten years for Parkinson’s research and support.  That’s right – half a million dollars.  They have achieved this feat through several creative events —  fashion shows,  rock concerts,  auctions.  I had the honor of being invited to a holiday dinner party, their 10th annual fund raising dinner, which included a live auction.  I have to say, knowing the Ericksons’ fundraising success, I imagined the guests would all be extremely wealthy, holding their flutes of Dom Perignon as they gazed out at a million-dollar Puget Sound view.  Nope.  No champagne, no view, just a lot of regular folks who are very generous.   I asked Pinky’s daughter how much they usually raised from these dinners.  She estimated about $20,000, which anyone who has run a charity auction could tell you is a very healthy amount.   I don’t know what the final amount was for this event, but, given the bids I was hearing, I think they will meet or exceed that estimate.  Good work, Pinky and your family, and thank you!

PS.  Want to donate to  Pinky’s Passion?  Check out her website.

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The Tale of the Contursi Kindred

iStock_000009472190_DNAThe Contursi Kindred – Sounds like a Dan Brown thriller, doesn’t it?  But it actually refers to an important early breakthrough in Parkinson’s research.  This research tale is well told by Jon Palfreman, an excellent science writer who started writing about Parkinson’s after he got a diagnosis himself.   This blog post pulls from  his 2015  book Brain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease.

The tale starts in 1986 when the brother of a Parkinson patient  approached New Jersey neurologist Larry Golbe and thought he too might have Parkinson’s.   Intrigued that two brothers both exhibited Parkinsonisms (not usually a genetic disease), Golbe dug further and found six relatives with Parkinsonisms.  He also learned the family had immigrated from a small town in southern Italy,  Contursi.  Months later, Golbe had another Parkinson’s patient of Italian descent — whose family also had immigrated from Contursi.

Ding!  The light bulb went on.  Although Parkinson’s does not typically run in families, Golbe realized he might have stumbled on a rare exception: a family “kindred” that passed the illness from generation to generation. He called his boss and mentor Roger Duvoisin, and together they embarked on an international journey of medical detective work.

After some exhaustive family tree research going back 12 generations, the doctors found that a mind-boggling 61 recent descendants out of 574 had Parkinson’s.  Descendants had a 50-50 chance of getting Parkinson’s.  There was obviously something genetic going on.

This was in the early 90s, as genetic research was starting to ramp up.  Finding a gene mutation was challenging – The New Jersey scientists collected blood samples from Contursi descendants and searched unsuccessfully for more than seven years. Then, in 1995, Zach Hall, who at the time was director of the National Institute of Neurological Disorders and Stroke (NINDS), suggested they share their Contursi blood samples with other investigators.  A collaboration was formed between the New Jersey researchers and two scientists then at the National Institutes of Health: Bob Nussbaum, a clinical geneticist with advanced molecular biology training, and Nussbaum’s colleague Mihael Polymeropoulos.

Within nine days, the NIH scientists had narrowed their search to one stretch of chromosome.  But it took nine more months and running the sequence against GenBank, an open-access genome database, to get a hit:  The gene was SNCA which coded for a protein called alpha-synuclein.  A single base change in the gene’s million-letter genetic code produced a mutant form of the protein, which caused affected members of the Contursi kindred to develop Parkinson’s.

The rare Contursi mutation does not show up in the DNA of regular Parkinson’s patients, but the role of alpha-synuclein has proved to be a vital clue in the wider war on the disease.  For starters,  those nasty Lewy bodies that clog the brains of Parkies are made up of — you guessed it — alpha-synuclein.  For more about this bad-boy protein, check out a previous blog.

Is Parkinson’s genetic?  Since the 1997 discovery of the alpha-synuclein mutation, some 18 potential genetic forms of Parkinson’s have turned up, involving another 10 or so genes.  But most People with Parkinson’s (like me) have no family history of Parkinson’s.  Perhaps there is something deep in my genome that predisposed me to get Parkinson’s — triggered perhaps by some sort of external factor.

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Who will take care of us?

Children wear masks as a thick haze of air pollution envelopes Tiananmen Square in January.?I recently read an article about a large study in China suggests a link between their really bad air pollution and impairment of cognitive skills.  This was disturbing, but more alarming was a throw away statistic in the article.  The article mentioned that “China already has the world’s largest population of people with dementia, as of 2013 about 44.4 million, and expected to rise up to 75.6 million by 2030.”  (This is from a report in 2013 by Alzheimer’s Disease International, a nonprofit based in Chicago.)

Wait – you’re telling me there’s 44.4 million people who need care in a country full of families with only one precious boy?  (It’s sexist I know, but I don’t think the precious boy will be the one wiping the oatmeal off of Grandma.)  China currently has an estimated population of 1.4 billion, so, whipping out the calculator, that’s 3% of the  Chinese population with dementia – a sizeable percentage.

This doesn’t include Chinese people with Parkinson’s.  The China Daily reports, “In China, it is assumed that more than 2.5 million people are living with Parkinson’s disease today. With the worsening trend of aging, the figure will surge to about 5 million in 2030 accounting for more than half of the world’s patients at that time.”  Not to sound too callous, but 2.5 million is a rounding error when your population is over a billion people.  Adding in the Parkies, this still comes to over 3% of the Chinese population who  presumably need or will need fairly constant and intensive caregiving.

How does this compare with the US?  The current estimated US population is 326.8 million.  The number of people with Alzheimer’s is estimated to be 5.7 million.  The number of people with Parkinson’s is estimated to be 1 million.   So, doing the math, about 2% of the US population has Alzheimer’s or Parkinson’s and presumably either requires caregiving now or will in the future.

Here’s a few more sobering stats from the Alzheimer’s Association website:
–16.1 million Americans provide unpaid care for people with Alzheimer’s or other dementias.
–These caregivers provided an estimated 18.4 billion hours of care valued at over $232 billion.

Knock on wood, I’m far away from needing caregiving.  I am fortunate to be married to a man who is only 9 months older than me, with no health problems or family history of dementia.  So hopefully, when the time comes that I need care, my husband will be the caregiver (or “care partner”, a more politically correct and accurate term).  And if I need more care resources, I hope that they will not have all been hired by China!

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The Board Game of Drug Development

Alexander Fleming discovers penicillin

Sir Alexander Fleming

I think we all nurse a romantic vision of a Parkinson’s cure.  The tale of Sir Alexander Fleming returning from vacation in 1928 and finding a mold that would become penicillin is a true story, but even in 1928, this simplistic story leaves out hundreds of researchers, government scientists, drug manufacturers, and most fundamentally, lots of money.

The complicated board game that is drug development is illustrated by the announcement this week of a successful safety test in humans of a LRKK2 inhibitor.  This was announced at the annual Michael J. Fox Foundation (MJFF) scientific conference by Denali Therapeutics.  Sounds kind of ho-hum, doesn’t it?  But this development was described as a  “milestone moment” in the announcement’s headline.Monopoly do-not-pass-go-300x300-300x195

Let’s break down the steps in the board game:
–First, LRKK2 was discovered about 15 years ago to be one of the principal gene mutations that causes Parkinson’s.  About 15% of the Parkinson’s population has genetically caused Parkinson’s.  So a drug that inhibits the bad actions of LRKK2 would be handy.
–Second, drugs are tested on animals before they are tested on humans.   When the LRKK2 inhibitor was tested on animals a couple years back, side effects caused worrisome changes in lung tissue.
— SCREEECH!  If you were a drug company, would you want  to continue testing this drug?
–MJFF intervened to keep this drug development moving.   MJFF brought together three competing companies developing LRRK2 drugs for Parkinson’s through the LRRK2 Safety Initiative. The three companies pooled their knowledge and evaluated what might have gone wrong.   The Initiative demonstrated that LRRK2 inhibitors were safe for human testing, allowing continued investment and research.  MJFF also ponied up some of the funding for testing.
–The first step in drug testing on humans (Phase I) is safety testing,  In other words, before we even test its efficacy, is this drug safe for humans?  What are the side effects?
Denali did not find “statistically significant differences” in side effects between the placebo group and groups receiving varying doses. 

So what’s next?  Phase II testing — this is moving into testing the efficacy of the drug.  None of the test subjects in the Phase I testing had Parkinson’s.   Phase II  subjects will need to have not just Parkinson’s but the LRKK2 gene mutation.  Fortunately, MJFF has been working with consumer genetics company  23andMe to build up a database of Parkinson’s genetic volunteers.   I need to double check because it was a couple years ago, but I believe my relevant genetic information is in this database.  Nope, sorry, I don’t have LRKK2 mutation or any of the other gene mutations associated with Parkinson’s.

 

 

 

 

 

 

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The Renaissance Man

Paul-Allen-portraitWhat do the Seahawks football team, Jimi Hendrix, the Cinerama movie theater, rockets to outer space, and mouse brains have in common?  They were all passions of Paul G. Allen, who died at  65 on October 15 from complications of non-Hodgkin’s lymphoma.   And since he amassed a fortune in the billions from being a Microsoft founder, all of these passions (along with many, many  other areas) were also substantial investments.

I am grateful for all the investments Paul Allen made in my hometown of Seattle.  (Well, the MoPOP Museum, originally intended to honor Jimi Hendrix, maybe not so much — it still looks like a plane crash off I-5.)  But the investment I am particularly grateful for is the Allen Institute for Brain Science, founded in 2003.  Allen plowed what is amusingly referred to as “seed money” in the Wikipedia entry – a cool $100 million – into this institute.   The first project was indeed an atlas of the mouse brain genome.  In 2010, the Institute launched the Allen Human Brain Atlas — mapping all 86 billion of those neurons.

The Institute is not researching Parkinson’s or other specific neurological disorders, but it is doing the fundamental neurological research necessary for someday finding a cure.  For instance, a current program is what the Allen Institute website delightfully calls “BrainTV” — ultimately being able to see what is happening in the brain as it happens.  Imagine the progress we could make in fighting Parkinson’s if we could see what happens to dopamine when it encounters a clog of bad-boy alpha-synuclein protein.

So thank you, Paul Allen.  Seattle and the world will miss you.

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Bozo approaches the cliff

I have asked my neurologist several times “When do I fall off the cliff?”  In other words, when do things get really bad?  He always smiles and in his positive way, assures me that Parkinson’s doesn’t progress like that.  I’ve never fully bought into that response, and lately, I feel like I’m teetering on the edge of that cliff.

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Case in point:  The community 5k run.  I’ve “run” this for a few years now (mainly walking, but last year my time was an almost respectable 46 minutes).  This year, I decided to sign up back in June even though the event wasn’t until September 30, so that I would be less tempted to weasel out of it at the last minute.  And I knew it was a mere two days after a 4-week trip abroad, but I figured I would be doing lots of hiking and walking on both the September trip to the Dolomites and my August trip to the Canadian Rockies.  Nope.  My walking has deteriorated so that after an hour or so, I need to lie down to “reset” my back which is curved over like a question mark.   As you can see, I dragged myself to the starting line, but the course conveniently went close to my house and I exited after about a mile. Now I’m wondering if I’m going to be able to lead the monthly walk I do for a community walking group. bozo-w-laura-doll.png

So what’s going on?  I am convinced that I do not have the right pharmaceutical combination.  Back in March, I decided it was time to move up to the heavier ammo of carbidopa/levodopa (that is, “fake” dopamine) from the dopamine agonist I was taking (makes your remaining dopamine work better).  My reasons were that I was tremoring more, had difficulty turning over in bed, and most impacting, could not shake my stooped-over posture.  I have now gone through four different combinations, thought I had hit the “sweet spot” but have deteriorated so quickly that I think it’s the drugs not the disease.  I have all these same symptoms — but worse now.  When I try to straighten up, I bob and weave like …..a Bozo doll.    I first felt like Bozo when my drug combination was higher than it is now, making me suspect I may have too much levodopa…but then again, maybe I don’t have enough.  A side effect of levodopa is dyskinesia (bobbing and weaving), but that’s after years of taking the drug, not right away like this.  I’ve got an appointment with my (extremely patient) neurologist in a couple weeks.   In the meantime, I’m trying to increase the exercise routine.  Gotta go – the alarm rang and it’s time to take another levodopa.

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