ABSTRACT
The changes in sleep that commonly occur in Parkinson's disease are rather unique and different when compared to the typical insomniac. In PD you don't generally have a lot of trouble falling asleep. In fact many of us also face the PD trickster's assault on daytime alertness so initiating a slumber is rarely a challenge. It's staying asleep and early-awakening that's the real problem. Many of us take prescription drugs to help give us a longer sleep so that even though those drugs may make us a bit groggy and even slightly more symptomatic, the gift of a full night of sleep is still more than welcome. Those drugs if used every night, start to lose their effectiveness so it's good to have what I call a "3AM hobby" to pass the time on nights of skipped sleep medication. Mine is writing articles for this blog and for the Dopadoc website.
MY STORY
The shopping cart loaded with supplies was full and the red and silver rocket-pack I had attached to either side should have been enough to propel it over the enemy's encampment to where several friends were protecting our neighborhood from an impending attack. In fact the last cart I launched in this manner had just barely made it over the occupied hill and one friend complained on the radio and questioned whether the rockets were any good. Well this most recent supply cart hardly left the ground before two of the enemy group intercepted it with a large net.
My dream was dissolving. It started out as a nicely illogical string of powerful events rocking my reality and threatening my neighborhood and the very safety of my family. I of course, responded by taking equally illogical steps to protect them from a vaguely recognizable enemy faction: in this case sending flying shopping carts loaded with groceries and other supplies over an occupied hill: carts that I had modified with extra-large red and silver-painted cardboard firework-like "rocket packs."
I didn't feel right. It felt like some unseen force, an invisible ether of molasses was getting in the way of everything. Even the rocket packs ceased to be effective. My family members and friends became annoyed not fearful, and the vague enemy that walked towards me seemed much less threatening as the jumbled and strangely encumbered dream world dissolved completely. I awoke in the darkness of my room to see the red display over on the clock radio in the corner flashing "2:45 AM" at me. I was wide awake. Having previously suffered from a Mirapex-induced eating compulsion before my dose was lowered I was still in the habit of getting up and "browsing" the contents of the refrigerator.
I ate two fresh cherries but resisted in devouring the leftover pizza I had shared with two of my children who had visited the night before. Quite an improvement as this pizza was from "Pizzatown" a favorite local source. Had I been on the previously higher dose of the dopamine agonist Mirapex (pramipexole) I'd have been able to literally taste in my mind, the uniquely delicious and chewy signature Pizzatown crust. My mouth would be watering and at that point of intense anticipation, not a loaded freight train nor a team of plough horses could have had the power to stop me from consuming the remaining foil- wrapped wedges.
Had the Mirapex been at its previously high levels I'd have also likely logged on to the Facebook online poker site. I'd have played obsessively till about 5 or 6 before finally falling back asleep. That was now almost a year ago. Since then I have finally lost the weight gained from a regular ritual of emptying the fridge of leftovers and other goodies as I played poker with the other insomniacs of the world-hemisphere I happened to be located in at the time.
When lowering my Mirapex dose, the psychiatrist assigned to me by the neurology clinic suggested that I replace the regular early AM "free time" with something "constructive and positive." Thus was born Dopadoc.
Now every few days I treat myself to a medication-induced full night of sleep but I've found that if you start taking any sleeping pill religiously every night it gradually or even rapidly loses its effectiveness. This has been shown true in dozens of studies. This practice also affords me the opportunity to utilize my medical knowledge at 3AM in a way that helps fellow PwP's (people w Parkinson's), and gives me the power of choice to pick the nights I'm going to really have a nice deep sleep. Because I only use the sleep medication (in my case 25mg of Seroquel) about once every 3-4 days now it never loses its kick.
Marshall "Dopadoc" Davidson
Reflections on Parkinson's, Personal and Practical
Tuesday, July 26, 2011
Monday, July 18, 2011
Off-label Adventures 1: Seroquel, My Favorite Antipsychotic
ABSTRACT
I wrote two articles last week discussing the cautions one needs to take when given Seroquel (quetiapine) "off-label" for sleep difficulties (off-label meaning not US FDA approved but still prescribed. Seroquel is one of the most commonly prescribed drugs for sleep in Parkinson's. Though possibly a practice initiated by its maker, AstraZeneca, I venture that most docs who write for it are generally interested in prescribing what truly works for their patients.
MY OWN EXPERIENCE
I had my first encounter with Seroquel about 2 years ago when I complained to my neurologist that what had become a regular pattern of 3AM awakening was starting to exhaust me. I had tried to adjust to it either constructively by doing some of my writing work or when Mirapex was at higher levels (another article I posted), by playing online poker and when in Manila occasionally going to an all-night bar with pool tables and practicing my billiards. I just craved for a decent night's sleep maybe every few days.
The first time I headed to the pharmacy with my newly minted prescription form I received an expensive bottle of those oh-so-tiny innocent-looking brownish-white little pills. I took one and to my surprise, even though it was the smallest amount in a pill (25 milligrams), I slept all night, and then right through the entire next day. That certainly kept me out of any night time trouble. My dreams were happier too.
As I also reported in an article the other day, that before a recent 16 hour trans-Pacific flight, despite taking the precaution of biting off half of one of those tiny 25mg pills, I was still quite groggy upon landing. So much so in fact, that I appeared "drugged" to 2 US Customs agents who pulled me aside and went through my baggage in a locked back room at LAX airport while questioning me.
Well after considering the pros and cons I originally decided not to take Seroquel any more. For me it was "too effective." That is until yesterday. The combination of Parkinson's-related sleep disorder with the fighting off serious jet lagging (Manila is 12 hours off-time from the US East Coast) had me completely exhausted and irritable, even a bid depressed.
It was especially hard to sleep at all and when I actually dozed, I faced a demonic, strange and disturbing dream life. When I woke at multiple times during the night I felt so exhausted I could not focus well on my writing work. I also found myself nodding-off several times during the day.
Well last night after being up until 4AM without any night time sleep for the 4th day, and feeling very tired and not able to focus decently on any writing tasks while awake, I gave in. I found the bottle of the potent little magic tic-tacs and took a whole one. I slept and it was good.
The dreams were happy and good or bad, I woke up at 4PM today (July 18, 2011) feeling slightly groggy yet very renewed and refreshed.
I was slow to move because I had not yet taken any of the day's medications and because of the effects of the drug itself. As a member of the class of anti-psychotic "major tranquilizers," Seroquel could block dopamine, already scarce from Parkinson's, and thus temporarily worsen the motor symptoms.
In fact there are many things to become aware of and watch out for when starting on any new drug, especially such a potent one as Seroquel.
Still despite all cautions, worries and concerns, I believe there may be good reason why it gets prescribed so much, at least in the US, for Parkinson's-related sleep difficulties. I my previous life as a doc in a pain-clinic for a few days a week, when a certain drug worked for a certain constellation of symptoms in a number of patients, you used it.
Sure drug company reps would visit on-occasion and discuss the merits of prescribing their new expensive on-patent drug (while a drug is still "on patent" a drug company has exclusive rights to make and sell it without competitors, and at any price the market will bear). However if a drug was ineffective you heard it first from your patients, and usually in the less-convenient off-hours.
Thus in any clinical situation, prescribing docs would be motivated to give their patients a drug which generally satisfies most patients while generating a minimum of side effects and off-hour phone calls. I imagine that for my own neurologist and for others, there's nothing that works consistently better for their patients.
I stating this I am neither taking a stand for organized medicine nor for big pharma. There are good docs, mediocre ones, and others who deserve to lose their license same as there are good and bad plumbers, lawyers and gardeners.
But I'd say that most folk who devote themselves to a specific career are generally ernest and honest, just trying to do a job with maximum effectiveness and minimal hassle. I believe that neurologists writing for Seroquel are no different. Let's face it. Seroquel is a potent antipsychotic with death warnings about its use in treating dementia psychosis. These facts stand in stark contrast to the TV commercials depicting it as a gentle elixir inducing sad attractive young women in large outdoor fields to smile (my friend's fiance was one of the ladies in that particular run of ads).
When neurologists prescribe Seroquel off-label in their sleep-interrupted patients it probably generates results. Despite due cautions, I'll bet from my own experience with taking it for sleep, that in most sleep-disordered PD patients, it generally produces satisfaction and generates a minimum of complaints.
For me personally, despite the potent effect it has, it's nice to occasionally treat myself to a complete night of sleep like in the old days before sharing my life with the Parkinson's trickster.
I wrote two articles last week discussing the cautions one needs to take when given Seroquel (quetiapine) "off-label" for sleep difficulties (off-label meaning not US FDA approved but still prescribed. Seroquel is one of the most commonly prescribed drugs for sleep in Parkinson's. Though possibly a practice initiated by its maker, AstraZeneca, I venture that most docs who write for it are generally interested in prescribing what truly works for their patients.
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| "The Dream," by Henri Rousseau 1910 |
MY OWN EXPERIENCE
I had my first encounter with Seroquel about 2 years ago when I complained to my neurologist that what had become a regular pattern of 3AM awakening was starting to exhaust me. I had tried to adjust to it either constructively by doing some of my writing work or when Mirapex was at higher levels (another article I posted), by playing online poker and when in Manila occasionally going to an all-night bar with pool tables and practicing my billiards. I just craved for a decent night's sleep maybe every few days.
The first time I headed to the pharmacy with my newly minted prescription form I received an expensive bottle of those oh-so-tiny innocent-looking brownish-white little pills. I took one and to my surprise, even though it was the smallest amount in a pill (25 milligrams), I slept all night, and then right through the entire next day. That certainly kept me out of any night time trouble. My dreams were happier too.
As I also reported in an article the other day, that before a recent 16 hour trans-Pacific flight, despite taking the precaution of biting off half of one of those tiny 25mg pills, I was still quite groggy upon landing. So much so in fact, that I appeared "drugged" to 2 US Customs agents who pulled me aside and went through my baggage in a locked back room at LAX airport while questioning me.
Well after considering the pros and cons I originally decided not to take Seroquel any more. For me it was "too effective." That is until yesterday. The combination of Parkinson's-related sleep disorder with the fighting off serious jet lagging (Manila is 12 hours off-time from the US East Coast) had me completely exhausted and irritable, even a bid depressed.
It was especially hard to sleep at all and when I actually dozed, I faced a demonic, strange and disturbing dream life. When I woke at multiple times during the night I felt so exhausted I could not focus well on my writing work. I also found myself nodding-off several times during the day.
Well last night after being up until 4AM without any night time sleep for the 4th day, and feeling very tired and not able to focus decently on any writing tasks while awake, I gave in. I found the bottle of the potent little magic tic-tacs and took a whole one. I slept and it was good.
The dreams were happy and good or bad, I woke up at 4PM today (July 18, 2011) feeling slightly groggy yet very renewed and refreshed.
I was slow to move because I had not yet taken any of the day's medications and because of the effects of the drug itself. As a member of the class of anti-psychotic "major tranquilizers," Seroquel could block dopamine, already scarce from Parkinson's, and thus temporarily worsen the motor symptoms.
In fact there are many things to become aware of and watch out for when starting on any new drug, especially such a potent one as Seroquel.
Still despite all cautions, worries and concerns, I believe there may be good reason why it gets prescribed so much, at least in the US, for Parkinson's-related sleep difficulties. I my previous life as a doc in a pain-clinic for a few days a week, when a certain drug worked for a certain constellation of symptoms in a number of patients, you used it.
Sure drug company reps would visit on-occasion and discuss the merits of prescribing their new expensive on-patent drug (while a drug is still "on patent" a drug company has exclusive rights to make and sell it without competitors, and at any price the market will bear). However if a drug was ineffective you heard it first from your patients, and usually in the less-convenient off-hours.
Thus in any clinical situation, prescribing docs would be motivated to give their patients a drug which generally satisfies most patients while generating a minimum of side effects and off-hour phone calls. I imagine that for my own neurologist and for others, there's nothing that works consistently better for their patients.
I stating this I am neither taking a stand for organized medicine nor for big pharma. There are good docs, mediocre ones, and others who deserve to lose their license same as there are good and bad plumbers, lawyers and gardeners.
But I'd say that most folk who devote themselves to a specific career are generally ernest and honest, just trying to do a job with maximum effectiveness and minimal hassle. I believe that neurologists writing for Seroquel are no different. Let's face it. Seroquel is a potent antipsychotic with death warnings about its use in treating dementia psychosis. These facts stand in stark contrast to the TV commercials depicting it as a gentle elixir inducing sad attractive young women in large outdoor fields to smile (my friend's fiance was one of the ladies in that particular run of ads).
When neurologists prescribe Seroquel off-label in their sleep-interrupted patients it probably generates results. Despite due cautions, I'll bet from my own experience with taking it for sleep, that in most sleep-disordered PD patients, it generally produces satisfaction and generates a minimum of complaints.
For me personally, despite the potent effect it has, it's nice to occasionally treat myself to a complete night of sleep like in the old days before sharing my life with the Parkinson's trickster.
Tuesday, June 14, 2011
Revisiting the Piano, Slowly and Deliberately
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| Silent Music, by Rachel Ann Foster "PhD PWP" |
I started playing piano about 10 years before my diagnosis of PD. I had since given it up but have recently revisited my abandoned hobby resolved to take a much slower and more deliberate, patient approach to re-learning. This has had great benefits in other areas like restoring my typing ability and in improving general dexterity. The internet has served as a great source of free quality instruction.
Though it was later in life, I unexpectedly discovered that I had a knack for learning piano as I helped my children practice their lessons back in the mid 90's. The fact that I could competently play melodies on the keys had destroyed a long-standing and deep-seated belief that I was incapable of mastering a melodic instrument.
Fact was that I, Marshall Davidson, an elementary school student, around the time when greats like like Jimi Hendrix were arriving on the scene while other legends like the Beatles were on their way out. During those momentous times for music, your dear author had already found himself as a washed-up trombone player with zero melodic aptitude, or so I was emphatically told by a raging music teacher.
Now to be fair I have to make an admission. I took up trombone on the single premise that I thought it to be a cool-looking instrument. The structure of the slide intrigued me. But as far as playing it, I had unquestionably demonstrated an uncanny incompetence during my early years of training in our public school music program that began in grade 4. I was actually involuntarily terminated by that teacher who in recovering from his rage, softly recommended that I take up a non-melodic instrument like the drums.
Even my own mother still jokes about it to this day. She says that when she and my dad used to go to the school band concerts to hear me, she could always identify my discordant cacophony totally out of synch with the rest of the band.
So in 5th grade drums it was. It was the right decision. Drums were fun for me and I became good enough at them to play quasi-professionally for years--yet another great love that has also fallen prey to the ruthless clutches of the PD trickster, but which I have kept up with as recently as 3 years ago and which I still drill for practice as a PD exercise.
So given that history, what a great surprise it was for me to discover that on piano, I could actually bang out some fairly complex melodies with some degree of competency: actually quite a high for me. Unluckily It was one of the first things to go with early Parkinson's, and in frustration, I stopped playing completely about 5 years ago.
Recently during an interchange with the Dopadoc "in-house" psychologist, Dr. Rachel, I mentioned how much I liked her gallery photo "Silent Music." I said that for me there was a bittersweet sadness to it as well.
She told me of how she was enjoying learning piano as badly as she thought it sounded and how it was bringing her great enjoyment. I decided to go back and start like a child and play for just myself without worry about how badly I too, might sound. At first when I jumped into the old stuff it was maximally frustrating. I was just unable to perform like before. My body would not follow my mind. My right hand was just too slow and too un-coordinated.
Then I went back 22 years to 1989 when I was a resident in Critical Care and Anesthesiology as Mass. General Hospital in Boston. My mentor Dr. Roger Wilson had given me the single best piece of advice I had ever received during my entire medical training. We both were called upon to re-establish an airway that had come unlodged on a ICU (intensive care) patient who had just undergone a rare and dangerous procedure for cancer of the trachea below the larynx. Impressed with Roger's cool mastery of the situation I asked how he kept his head in the face of a patient that had almost died right there.
Roger said, "There are two words I want you to apply to everything you do around here no matter how dire the circumstances and no matter how rushed you feel on the inside and no matter how panicked others seem on the outside: slow and deliberate. Move slowly so that every movement has a purpose...no wasted action--no spinning your wheels. You'll be surprised at how fast you'll seem to everyone else."
So that's how I approached re-learning the piano: literally 1 deliberate note to the next, slowly. patiently, un-rushed. And things began to turn around. Bit by bit, note by note I pieced the old songs back together. I did childs' hand drills. It has turned out great. Slowly and deliberately. I'm amazed at doing what had previously seemed permanently impossible for me.
Revisting the piano has been great for me even as its effects impact other areas. For instance, I was losing my ability to smoothly type which was even starting to limit my writing activity. Piano has set me back about 2 years, to where although at that time I was typing a bit slower, it was still rather smooth. My general manual dexterity has improved in general as well. Most of all however I scored a small victory and to a small degree, have for once, deflected and pushed back at least one assault of the PD trickster .
Thursday, June 2, 2011
Hack Attack on Dopadoc.
Who does this? An old lady is walking down the street with an arm-full of groceries and just for the "sport" she gets sacked by a teen whose identity is hidden by an extra-large hooded sweatshirt. That's just like some bored geek from Washington State US who, with nothing better to do on the Saturday night of a holiday weekend, exercises his/her hacking skills to bring down a private nonprofit website devoted to Parkinson's disease. Where's the skill in that? Cliche's like "fish in a barrel" come to mind.
Go try and bring down the 2600 website instead. That would be true sport and likely impossible as the hacker journal "2600" is run by a group of anonymous and very skilled hackers. Yeah, take 2600 into the cyber-ring and see if you make it past the first round! That would say something.
OK I've got the ilk out of the way so we can talk.
The Dopadoc website was repeatedly attacked and actually taken over by a bunch of cyber-hooligans in a very skilled and coordinated attack several days ago. The 3 players came in from Seattle, Germany and India. I have to take humor in the image of 3 people from 3 parts of the world about as maximally culturally different as one could imagine, in a Skype group chat planning an attack on a nonprofit charitable site. What did they say to one another(?):
"Dudes, Raj and Helmut, thanks for coming in on this, dawgs. I'm really stoked at how we all vibe that (people) who try and educate the world about Parkinson's are just (word for male anatomy, plural) who need to be taught a lesson."
"Yes Amber I hate that with much passion. What about you Helmut? So quiet you have been."
"Let's not waste any more time in useless chit-chat, we have an enemy to bring down."
"OK buds let's roll!"
And the group initiated an attack using an ingenious little software trick whereby the database on the server that holds all the articles, pictures etc. was sent a seemingly innocuous request-command to access normal data your browser might do when clicking a link on my site. The crazy thing is you don't even need to be skilled to do this. There is software that you can legitimately purchase and download right now from the Web that will do it faster and more efficiently than any international 3-person cyber cartel.
How does it work? I was waiting for you to ask.
A website is "hosted" on a server computer that connects with the Net 24/7 leaving a door open to a database that holds components of the site like photos, text, fonts etc.. Well imagine there is a gatekeeper on that database who only speaks english at the server database door. The hacker simply asks, "can I view the photo of Mr. matelo and his terribly swollen feet?" The english gatekeeper lets the command pass because it seems to make sense grammatically. It assumes matelo to be a person with swollen feet.
Inside the server however there are two command readers, one to execute English commands and another to execute any Spanish commands. The English reader gets distracted looking for a Mr Matelo who doesn't exist while the Spanish reader only sees "matelo" the spanish command for "kill-it" and thus shuts down the server, bringing down the site, or, in the case of the Dopadoc site, rewrites a file directing all traffic to the hacker's site, a mirror image of the original one.
In technical language the English is the MySQL database query command-vocabulary and the Spanish, a server-command-language called PHP. Essentially a sneaky piece of PHP command code is camouflaged within a seemingly innocuous MySQL query. Kind of a Trojan Horse situation you might say. It's called an "SQL-injection attack."
Well the whole ordeal was actually a fun learning experience because among other things I started to understand the actual software/hardware arrangement of how a website actually gets executed. I also learned a few hacker-stopping tricks. The three have continued to unsuccessfully reattempt access about every 12 hours since. Why? It's quite puzzling to me where the potential gain would lie in taking over a nonprofit website that takes in no revenue and takes in and stores user email addresses on a separate google-based system. I welcome comments by anyone who can answer that.
Tuesday, May 24, 2011
I am NOT the new-onset in 7
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| Neurologist Allan Krumholz, MD |
Too many years ago to believe, 1985 actually, I began my medical school neurology rotation at Sinai Hospital, a Johns Hopkins satellite affiiliate in Baltimore Maryland. I was one of the lucky ones. Instead of being shuffled around the huge busy clinics of the main hospital, one other student and I got to spend 6 weeks as the privileged guests of the brilliant neurologist, Dr. Allan Krumholz. Dr Krumholz loved neurology, loved his patients and especially loved teaching. Unlike a lot of other academic docs who left most of the clinical work to neurology residents, Dr Krumholz was very hands-on, and went to great lengths to discuss the patients on rounds that were always long but fascinating. I'll never forget him teaching a series of tricks, one involving a suitcase to verify whether or not a patient suspected of faking paralysis was telling the truth.
One day on rounds the neurology resident also rotating with us, an overzealous geeky guy more interested in facts than patients casually told Dr Krumholz, "We need to check in on the temporo-parietal stroke in the ER." Actually it was a man, a well-to-do local businessman whose heart had a rhythm problem. This created an uneven turbulent bloodflow through the heart: ripe conditions for a clot which in his case travelled from the heart, up through the right carotid artery in his neck, and lodged in the right side of his brain causing massive tissue death downstream, specifically in the "right temporo-parietal" region.
Krumholz, a calm good-natured patient man, unexpectedly erupted into a fierce diatribe. "That's a very unlucky man with a very serious problem that's going to change his life for good! He's not a 'stroke.' There's a stroke that's wreaking havoc in his forever-to-be-damaged brain. A stroke is an event, he is a person with a name and a life that's not going too well right now." That's what I think I remember from a full 10 minutes of hell's wrath having rained down on the resident geek. I never forgot that and certainly never referred to a patient as their diagnosis.
Since then I've seen many different kinds of insensitive indiscretions involving the nonchalance of physicians who somewhere in training, lost their empathy--the recognition that before them sits/lies another person with a serious problem seeking help. Never a diagnosis, this is a fellow human.
Most recently several people who are part of the Dopadoc community have sent in disturbing accounts of empathy-deprived neurologists they've faced. Unable to give medical advice myself I give the same response to everyone, "go get a second opinion." Yet each time I'm a bit disturbed if not all out embarrassed that the offending party is another physician.
The other day a site-member who has always been quite involved sent me an angry message. I had posted statistics on the mental decline of PwP's who were young-onset vs. late-onset that contradicted a rather insensitive prognosis thrown at him by his neurologist. Apparently he was told that for unspecified reasons, he had 7 years left of a dementia-free life 3 years after his diagnosis of young-onset Parkinson's (YOPD)--that people with YOPD should only expect 10 good years before descent into demented darkness.
I went back to my original article. I re-checked its sources and did an exhaustive search again but found nothing. However even if I had found a definitive well-respected study giving the average YOPD'er 10 years to higher brain compromise it would still have told me nothing about this individual man who wrote me the email.
What kind of person uses published statistics to hand over the sentence of brain-death-in-seven-years? "Well it's in the statistics," you might say. Study statistics are good at predicting the behavior of large groups of patients who happen to be very similar to those in the study test population, that's it. They are good for guiding what treatments to start with for instance but won't tell you who will have a great response and who will for instance in the case of L-dopa, develop a permanent dystonic twitch of the jaw.
When I was first seen in the neurology clinic at a large academic center in NYC, the day I received the diagnosis of PD, I was first seen by a neurology resident. I coincidentally overheard him refer to me in the hall as "the 'new-onset' in 7." Disgusted I almost walked out on the spot, but the attending neurologist came in at that moment, pleasantly addressed me by my name, shook my hand as he introduced himself, one real person to another. Then he looked me in the eye and said, "I've got good news and bad news..." I've already written about that exchange, but being treated as a human being while receiving some very sobering bad news made all the difference. I was no longer the 'new-onset' in 7.
Sunday, May 15, 2011
What has fire safety got to do with Parkinson's drugs: Text and Video
Several online community members have written off-line about their fears regarding the safety of initiating therapy with two particular groups of medications: Levodopa and its combo-drugs like levodopa/carbydopa (Sinemet), and the dopamine agonists like pramipexole (Mirapex) and ropinirole.
In other articles I have attempted to give a balanced view of both groups especially after an article about levodopa raised strong complaints about what was perceived as a negative spin on the drug. Still much fear abounds and I say now that taking these drugs can be accomplished generally safely if you observe due vigilance much like when taking precautions for fire safety. Both require a balance point far between the polar extremes of nonchalance and unreasoning fear.
Read on about fire safety and medication:
Wednesday, May 11, 2011
Manny Pacquiao and Manila: Oh The Places You'll Go
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| Poster from Manila Bay Cafe in Manila, Philippines |
When recounting life since my official diagnosis in 2007 I come up with a richly dense set of images and memories. Things have certainly taken a different path than anyone could have predicted, however to balance the sense of helplessness and even denial I experienced, is a greater abundance of positive experiences that I'd have never imagined. This is about one of those experiences.
By way of background there's nothing unique nor magical about extraordinary life encounters following diagnosis . It seems to be a common experience among PwP's. I've written about the "Parkinson's personality." Whether it is cause or effect is unknown, but ask any neurologist about it, and most will tell you that a large chunk of their PD patients tend to be rather hard-driving, meticulous, goal-oriented get-it-done types. It would only seem logical that such a patient population would naturally and more-likely react to their diagnosis by attempting to get more out of life while they can, rather than retreating into depressive isolation. Although biological depression comes as part of the package for many of us, I believe that as a group, we also tend to resist its shackles and work around it. No matter what we persist in what we can do in the present, making the most of an uncertain future.
For me, a doctor who needed the balanced function of both hands, the physical limitations of the condition forced me into a life-altering circumstance. I decided early on that whatever I did it had to be fun and if possible, adventurous. Having had extensive experience already part-time as a research consultant to various industries, I found a research position with a US-based corp on assignment to Asia.
The adventures began: I think I literally wore-out at least 5or 6 of the Lonely Planet guidebooks for Asia. I ate live squid on the seaside southern banks of the South Korean peninsula. I got arrested in China for foolishly attempting to get a friend to photograph me climbing the Great Wall. I was awed by the most beautiful location I had ever seen:
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| Do not try this in China! It will make your visit much more complicated than necessary. |
Then a few months ago I was horrified to see a video of boxer Antonio Margarito mimicking the Parkinson's dystonia of famed Manny Pacquiao boxing-trainer Freddie Roach. It was posted by another PD blogger. I was incensed and so I sent in an article to a sports website in an attempt to raise awareness of the plight similarly faced by other PwP's.
I remember typing that article with such emotion that I could barely use my right hand. They published it. Because it attracted a large number of readers I was invited to cover the Pacquiao fight against Shane Mosley this past weekend from Manila. The editor liked the idea of me going to a sports bar there and getting a Filipino-eye-view of the Pinoy boxing legend in action.
I expected a lot of talk about boxing so I prepared by reading a bunch of articles from the boxing section of their website and cross-referencing it with Wikipedia. I was ready to discuss the fight, the fighters, their strengths, weaknesses and histories.
Ready on Sunday AM I put on my sportswriter hat and worked the crowd . Except for a few cases, whenever I tried to talk boxing the focus quickly shifted to Pacquiao the man. The resulting article had very little to do about boxing yet garnered a healthy audience when posted. Here's the article reproduced with permission:
Manny Pacquiao: View from Manila—Pacquiao Not Just for Boxing Anymore
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By Marshall Davidson (Contributor) on May 9, 2011
905 reads 0 comments
You're in the Boxing channel.

Poster from the Manila Bay Cafe, Ermita district, Manila, Philippines
It’s 8 AM Sunday, May 8, 2011 in Manila. Not too far from the bay on a side street in the Ermita district of the city sits the crowded Manila Bay Cafe.
Formerly one of the most popular red light neighborhoods in Asia, Ermita, this somewhat rundown district of Manila, has undergone a continuous massive cleanup by Mayor Alfred Lim. The bar itself, formerly known as “LA Cafe,” contains several large bars, a stage for live bands and plenty of billiards tables spanning two floors.
Running 24/7, until a year ago it was one of the few remaining “bar girl” havens. Lim closed it down after undercover officials discovered underage solicitors. After several months it was reopened officially as a sports bar, so it’s the perfect place to take in the Filipino perspective on this morning’s Manny Pacquiao-Shane Mosley fight (Manila is 10 hours ahead of Las Vegas).
The mood is noisy but festive, and the venue is as heavily crowded as any busy Saturday night. Since there are no windows there’s no way to tell that it’s actually Sunday morning. Most of the men are drinking beer.
“I asked to work today and skipped church to see my Manny win again.”
A skimpily clad waitress, a typical dark-haired, exotic native beauty, hands me an OJ and vodka. After all, it’s only been a day since I got off the plane after a 16-hour flight from LAX, and by my own body clock, it’s still early Saturday evening. The country here is very Catholic, but clearly the bearded savior has got some serious competition today, nigh two weeks after Easter Sunday.

One of several bars inside the venue.
To suggest Manny Pacquiao is God here may be understated. Let me explain. It’s rather noisy, so I duck into the men’s room, where Rico, the head bathroom attendant, shakes my hand. Rico loves to discuss sports, especially boxing, one of the four famous big “B’s,” the most loved Filipino sports: boxing, billiards, bowling and basketball.
"No problem," Rico says. "Mosley's not going to stop him. What do you think, my friend?"
Boxing had always taken a back seat to bowling and billiards in the Philippines, the source of champion legends like bowling’s Rafael "Paeng" Nepomuceno and the “magician” of billiards himself, Efren "Bata" Reyes. Both were sources of great national pride until Pacquiao elevated boxing to the No. 1 “B” position.
“He came here and kicked ass in billiards,” said Rico, intentionally leaning on the American slang. Sure enough, the Pac-Man’s distinctive autograph graced one of the lamps over a central billiards table. “He could just as easily make it big in billiards.”
True or not, it underscores the general belief and hope that Pacquiao can not only box—but that he can do anything he sets his mind to, most recently to solve the country’s problems with corruption and poverty.
As I chatted with other Filipinos in the excited crowd, a clear impression began to take shape. Regardless of the outcome of this morning’s fight, to the average Filipino, Pacquiao has ascended far above the role of boxing’s national pride. He has become the “one.” Several said they were sure he’d be president someday in the not too distant future.

Congressman Pacquiao with Mosley, decked-out in formal suit at Wednesday's press conference
There seems to be little concern as to whether or not he is going to win. In fact, I asked several people why they came out on Sunday morning to view the fight and whether they thought he would defend his title yet again. “Our bayani (hero) will win, but even if he doesn’t, we are here to support him. He’s here to save the Philippines. Boxing is his hobby.”
The proud people of the Philippines seek a savior, and right now it’s Manny Pacquiao. The demographic today is different here from the last fight viewing: more women and less actual fight talk. I’m now certain that aside from a core of true boxing enthusiasts, today's crowd is less here to watch a fight than, I dare say, to pay homage and get a look at their living messiah in action.
Thus far Pacquiao has had no difficulty filling the massive shoes of expectation placed upon him by these people. Beset with the dire economic consequences of decades of widespread government corruption, they've had had a string of bad luck with elected officials entering office on that platform only to conspicuously become part of the problem as they used their office to enrich themselves and their families. Wealthy beyond belief but from common roots, they view Manny as different.
It’s apparent that the fighter himself is even taking the extra step to promote this new role. A newly elected national congressman, in fact its richest member, he appeared at Wednesday’s press conference dressed in a conservative suit. Reading a prepared speech, he said, “The biggest fight of my life is not in boxing...(but)...to end poverty in my country.” He spoke as if defending the Welterweight title against Shane Mosley was a secondary concern.
Mosley, equally moved, referred endearingly to his opponent as “a great person.” As the fight begins I find myself starting, too, to feel a certain awe that there’s more to this nationalistically yellow-clad “bayani” than championship boxing.
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