tag:blogger.com,1999:blog-38663386362330910152024-03-13T17:48:09.422-07:00ParklifeMy secret life as neuroscience professor and PI with Parkinson's diseaseParker Liferhttp://www.blogger.com/profile/09892332065873441546noreply@blogger.comBlogger33125tag:blogger.com,1999:blog-3866338636233091015.post-8668448403292331192021-11-02T18:12:00.000-07:002021-11-02T18:12:10.293-07:00My Brave Face<p>I said something to one of my graduate students today. I told zir that "I wish I could walk around with a disclaimer on my forehead that says 'If I do anything weird, it's 100% P.'" I'm not exactly kidding.</p><p><span></span></p><a name='more'></a>I was diagnosed ten years ago last July, and I have had symptoms dating back at least twelve years. Many people are seriously impaired by this point, so I can't really complain. Progression is extremely slow, but I am actually beginning to feel like I have something to manage. At this point I feel like I am in a liminal zone between "he seems fine to me" and "seriously what is going on with that guy?" We'll just call it "he seems like an odd, uncomfortable, anxious dude."<p></p><p>P-derived anxiety has always been and continues to be my worst enemy. That is both as a symptom and as a secondary effect, meaning I am unclear on what proportion is attributable directly to P and what proportion is attributable to self-consciousness about P. Through the day, I sometimes have changes in demeanor, head bobbing, squirming in my legs, and/or stuttering. With these things, it is also unclear to what extent these are symptoms or side effects (e.g. dyskinesia from L-DOPA). It's past the point where I can completely hide it, but it's not acute enough to be obvious to people what is going on. As a person who has always been introverted, this is not fun. It's frustrating because I really feel like I'm doing the best work of my career and I would love to talk about it with more people.</p><p>In <a href="http://parklifensci.blogspot.com/2012/12/the-worst-thing-about-living-lie-is.html">one of my earliest posts</a>, I related an observation by erstwhile talking head Michael Kinsley about life with P being a performance, and I feel like I can see another facet of that now. Acting like everything is fine is a dwindling option. Not addressing it definitely makes me uncomfortable and possibly makes other people uncomfortable. Telling people who don't know that I have P is highly awkward for both of us. That's why my preferred solution is the forehead disclaimer. </p><div style="text-align: left;"><i>The simplest things set me off again<br /></i><i>And take me to that place<br /></i><i>Where I can't find my brave face</i></div><p style="text-align: left;"><br /></p>Parker Liferhttp://www.blogger.com/profile/09892332065873441546noreply@blogger.com0tag:blogger.com,1999:blog-3866338636233091015.post-77637557486850109582018-11-08T18:31:00.000-08:002018-11-08T18:31:21.385-08:00Does Everyone Stare?<i>All these open spaces </i><br />
<i>They give me no cover now <br />I stand out here <br />reflecting all your fears off my odd surfaces <br />And those friendly faces </i><br />
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<i>They just disappear somehow <br />Behind the glass <br />The dirty window curtains and shades coming down <br /></i><br />
Believe it or not, those words were written from the perspective of a sentient ball of raw ground meat. Perhaps you are familiar with the animated TV series <i>Aqua Teen Hunger Force</i>? Perhaps not. I don't know much about the show myself, but its band of protagonists consists of a milkshake, a box of french fries, and the aforementioned "Meatwad." I also don't really know what Meatwad's deal is, but he seems like a pretty neurotic and insecure dude.<br />
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I just got back from the massive Society for Neuroscience meeting, at which roughly 30,000 of my fellow neuroscientists gather to meet, share their research, and socialize. I've been going nearly every year for 20+ years. I always look forward to it, and yet there is almost nowhere in the world I feel less comfortable.<br />
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I haven't written in a while, and there are many reasons for that, but one of them is that I am doing quite well considering my symptoms first emerged nine years ago. Most of the time, I am pretty well controlled, and I feel some considerable measure of guilt complaining about P. But, however I may look on the outside, I'm not always feeling so great inside.<br />
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When I am interacting with you, I am constantly conscious of where my hands are, what they are doing, my posture, whether I am talking normally, whether I am blinking, whether I am swinging my arms, whether my gait is awkward, whether my foot is twitching. I have no idea whether you notice any of this, but I am obviously aware of everything my body is doing. Add to this the sleep deprivation, time zone change, and the need to always be "on" because you might run into someone important literally at any place and anytime, and my symptoms become more difficult to hide. I feel like I can seem pretty odd or off to people, but I doubt many people know what is going on with me. Instead, I probably just seem weird, or they don't notice at all.<br />
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Honestly, if you know what you are looking for, I think it's pretty easy to spot. I see it all the time in other people. In fact, coincidentally there was an unusually high number of people with P on my plane to San Diego. Maybe there was some kind of group traveling together <shrug>. One friend who saw me for the first time in several years told me he knew from across the street. His father has P. I would be fine if people knew my condition. It's more the people that see things they don't understand that freak me out. It makes me feel like I'm under white hot klieg lights.<br />
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Don't get me wrong. I love to see my neuroscience friends, and I had a great time with many of you over the past five days. I love immersing myself in the science. But I was also reminded that I sort of understand where Meatwad is coming from.<br />
<br /><i>These bright clear skies<br />They they give me no peace of mind<br />I'm out here cooking all alone in the sun<br />Put me away I'm done anyhow<br />And those funny faces<br />Yeah they're all crumbling down<br />It's something like shying away<br />From any shapes that you don't recognize</i></div>
Parker Liferhttp://www.blogger.com/profile/09892332065873441546noreply@blogger.com1tag:blogger.com,1999:blog-3866338636233091015.post-35722533942055407622016-07-28T19:24:00.000-07:002016-07-28T19:34:11.225-07:00Fix My Brain<br />
<i>Red wire: Right temple</i><br />
<i>Black wire: Left temple</i><br />
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As I think any lay audience is aware, we conventionally take in all our information about the world through our five senses. External receptors that sense light, touch, sound, taste and smell send messages about these stimuli into our brains, where they are processed and interpreted. However many techniques available to neuroscientists can bypass the sensory pathways and directly stimulate the brain.<br />
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In 2008, a team of neuroscientists from Cold Spring Harbor Laboratory led by Karel Svoboda published the results of a simple yet remarkable experiment. Svoboda's group took advantage of a new technology now in wide use called optogenetics that allows the experimenter to activate a defined set of neurons by simply illuminating them with blue light. They were interested in what would happen if they did this in an awake behaving mouse. Could the mouse detect the activation? Could it learn to reliably make a behavioral response when it was detected?<br />
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This was hardly the first time neuroscientists directly stimulated deep brain neurons, so the fact that the answer was yes was not so surprising. However, this was the first time the experimenters could know precisely how many neurons they were activating and for how long. So the real question was what is the minimum number of neurons they would need to activate for the mouse to reliably perceive the stimulation? The answer was surprisingly few. Despite the fact that there roughly 70,000,000 neurons in the mouse brain, instantaneous activation of merely 300 was sufficient for the mouse to reliably respond.<br />
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I remember reading this paper is a postdoc and wondering what that would feel like.<br />
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**************<br />
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<i>They put a hot wire to my head</i><br />
<i>For the things I did and said</i><br />
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I have been fortunate to have had the opportunity to participate in a number of research studies of P. Many parkys do this for all kinds of reasons. A common one is obviously the hope that one might discover a new treatment that brings them some benefit. I am no exception in that regard, but being a neuroscientist myself, I can't resist getting in on doing some science where I am the subject for once. I told some people that I was having an experimental therapy and they looked worried if it was some desperation Hail Mary pass. On the contrary, I'm essentially pretty stable symptom wise, and this was an exciting opportunity.<br />
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Two of these studies, including one that I just completed involved use of a method called transcranial magnetic stimulation or TMS. TMS is a totally noninvasive way for my doctors to do something akin to the Svoboda experiment. They more or less jack in and directly activate my brain.<br />
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Why did they do this? I don't want to get into the details, largely in deference to the research team because the project is ongoing. The details aren't important anyway. In general terms, they used repeated sessions of rhythmic stimulation of certain regions of my cerebral cortex to hopefully trigger 'neural plasticity,' which means adaptive changes in brain wiring.<br />
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Did it work? I think so. The benefit was actually very noticeable in response to the protocol I underwent last year. I started noticing that particularly the night after I had a session, I was shredding on Guitar Hero with my kids. No joke!<br />
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How did it feel? That's harder to put into words, but it was certainly fascinating and super weird. It certainly didn't hurt but it can sometimes be annoying, particularly at high intensity. Sometimes it felt like there was a flash, as if someone hit a reset button on my brain. Sometimes, often in fact in the places they were stimulating, it would trigger an involuntary movement. In fact they use this to map the location they stimulate and as a quantitative measure of its effects. Honestly, I wish I could get into that lab with one of my neuroscientist friends and try zapping away at different parts of our brains just to see what happens.<br />
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Like Karel Svoboda.Parker Liferhttp://www.blogger.com/profile/09892332065873441546noreply@blogger.com1tag:blogger.com,1999:blog-3866338636233091015.post-80163939674539440732016-01-07T18:49:00.000-08:002016-01-07T18:51:08.045-08:00The WarRichard and Linda Thompson's classic album "Shoot Out the Lights" is an extended metaphor for the concurrent dissolution of their marriage. The whole album bristles with the tension and heartbreak of fighting for something they both value as they feel it inexorably slip away. The album closes with its most memorable track "Wall of Death":<br />
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<i>Let me ride on the Wall Of Death one more time</i><br />
<i>Let me ride on the Wall Of Death one more time<br />You can waste your time on the other rides<br />This is the nearest to being alive<br />Oh let me take my chances on the Wall Of Death</i></div>
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The Wall of Death was a notorious carnival attraction where daredevils rode motorcycles around the high interior wall of a cylindrical pit. It was perilous, exhilarating, unforgiving and rewarding. One might reasonably question why someone would do this the first time, much less again, but Thompson attempts to explain. I presume he means to draw a parallel to the emotional dangers of love and marriage. He seems to be looking back at the wreckage of his relationship and saying he'd do it again.</div>
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I see parallels with the tenure track. Perilous and unforgiving? You bet. Anybody looking to hire a grantless scientist with P? I didn't think so. So the stakes for me were high. The significance of failure was not just defeat by the assistant professor track, but defeat by P. Once you're on the Wall of Death there's no bailing out, but if I had to ride again to keep my job I would. Even if the outcome might be different. Some things are worth going to war for. </div>
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Richard and Linda Thompson sadly lost their war, but 2015 was the year I won mine.</div>
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<i>All these songs I play for you</i></div>
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<i>They tear me up it's not hard to do</i></div>
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<i>Listen to my voice</i></div>
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<i>It's the only weapon I kept from the war</i></div>
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Parker Liferhttp://www.blogger.com/profile/09892332065873441546noreply@blogger.com0tag:blogger.com,1999:blog-3866338636233091015.post-73704637506453236812015-09-24T19:54:00.000-07:002015-09-24T19:56:10.930-07:00The Needle and the Damage Done<i><span style="font-family: Verdana, sans-serif;">I got a sickness</span></i><br />
<i><span style="font-family: Verdana, sans-serif;">Sweet as a love note</span></i><br />
<i><span style="font-family: Verdana, sans-serif;">I got a headache</span></i><br />
<i><span style="font-family: Verdana, sans-serif;">Like a pillow</span></i><br />
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<span style="font-family: Verdana, sans-serif;">Much of 20th century experimental psychology was dominated by the behaviorist school of B.F. Skinner. They saw essentially all behavior as a product of a life history of rewarded and punished actions. At the time, scientists were very interested in understanding the brain circuits that process rewards. Olds and Milner made a crucial breakthrough by discovering a technique known as 'intracranial self stimulation' or ICSS. This discovery emerged from experiments that involved implanting a stimulating electrode into a rat's brain and zapping it every time the rat went to a specific location. They found that the rat started spending most of its time at that location. So then they decided to hook the stimulator to a lever that they rat could press itself and the results were terrifying. Pretty quickly the rat figures this out and subsequently it doesn't give a shit about anything but pressing the lever. It will do almost anything for free access to the lever, including enduring painful electric shocks and forgoing food. Yes that's right. The rat will sooner literally starve to death than stop pressing the lever.</span><br />
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<span style="font-family: Verdana, sans-serif;">This experiment is effective with stimulation of a number of brain targets, but one of the most effective and best studied is the mesolimbic pathway originating in the ventral tegmental area or VTA. You get one guess which neurotransmitter is released by the VTA.</span><br />
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<span style="font-family: Verdana, sans-serif;">*********</span><br />
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<span style="font-family: Verdana, sans-serif;">One of the main topics of my parky meeting was something we don't often discuss, particularly with those who aren't members of our club: the effects of dopamine replacement therapy on impulse control. I volunteered to lead this discussion because reward processing and motivated behavior are of considerable scientific interest to me, but I was unprepared for the terrifying window it would give me into the personal devastation that can occur with certain P drugs.</span><br />
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<span style="font-family: Verdana, sans-serif;">Most P symptoms are believed to result from depletion of the neurotransmitter dopamine. Strategies for fixing this fall into two broad categories. One approach is to feed your dopamine cells with L-DOPA to help them manufacture more dopamine. Another strategy is to enhance the effects of the dopamine you still have with something called an agonist.</span><br />
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<span style="font-family: Verdana, sans-serif;">Most people find taking agonists helpful. I do. However, they sometimes have some weird side effects that are almost certainly related to the rats and the lever. When I say 'sometimes' that might be 14% of the time if you believe the drug companies or 100% if you believe some parkys. It seems clear to me that the number is somewhere in between. Where exactly depends on where you draw the line between harmful and harmless. I can certainly be compulsive/impulsive. Anyone who knows me well and/or follows me on Facebook surely knows what I mean. Fortunately, my destructor has chosen a relatively benign shape and amplitude.</span><br />
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<span style="font-family: Verdana, sans-serif;">Other people aren't so lucky. For one thing, the blunt reality is that dopamine replacement drugs are drugs of abuse. Remarkably, I actually never thought of it in this framework, but people literally pop these pills (or even take them as directed) and pursue darker, more dangerous obsessions. Sex, shopping, gambling, risky investment, shoplifting whatever. In extreme cases, people no longer give a shit about anything but 'pressing the lever'. I heard a lot of stories about what these drugs have done to people and it shook me up.</span><br />
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<i><span style="font-family: Verdana, sans-serif;">L-DOPA fixed me, alright!</span></i><br />
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<br />Parker Liferhttp://www.blogger.com/profile/09892332065873441546noreply@blogger.com2tag:blogger.com,1999:blog-3866338636233091015.post-10963304929303771752015-09-23T20:07:00.000-07:002015-09-23T20:07:12.026-07:00When I Win the Lottery<i>In a fast German car</i><br />
<i>I'm amazed that I survived</i><br />
<i>An airbag saved my life</i><br />
<br />
Time and again on my blog I've embarrassed myself by copping to being deeply moved by maudlin and sentimental art, so why stop now? In the final scene of Saving Private Ryan, Matt Damon as an old man visits the graves of his fallen buddies and says to his wife, "Tell me I lived a good life." That scene just wrecked me.<br />
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I have always had a difficult relationship with survivor's guilt. My mother revealed to me as an adult that my birth was surrounded by grief and loss. I'm certain it's a coincidence, but there's very likely some behavioral epigeneticist out there who thinks differently. Regardless, whatever the reason it's baked into my psyche.<br />
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I realize my last lyrics-only post was kind of cryptic, but it related to this issue. I for once felt like had nothing to say that wasn't better articulated by the song. It was my reaction to (apparently) managing to pull my lab out of a funding nose dive with no rhyme or reason other than dumb luck when some of my friends are still barreling groundward. But that's not what this post is about.<br />
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<i>My science fiction twin</i><br />
<i>Is doing better than expected</i><br />
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I recently convened with a parky group I am working with on a project and met a new member who is symptomatically similar to me. That is to say that ze is also not outwardly, obviously affected by the condition most of the time. We had a conversation about this that caused me to reflect on just how long I have been dealing with P and just how slowly it's progressing. My symptoms may have emerged as many as seven years ago, but I'm frankly doing awfully well. Many people are not so fortunate and that makes me sad.<br />
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I get the feeling some people expect me to feel like I got the shaft, but I sure don't. I read a quote from Radiohead's Thom Yorke referring to the lyrics that start this post. He said that basically you should jump for joy every time you get out of a car and you aren't dead. That's a better reference point.<br />
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My inexplicable and uncomfortable fortune reminds me of the final verse of one my all time favorite songs.<br />
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<span style="letter-spacing: 0px;"><i><span style="color: #f3f3f3;">When the end comes to this old world</span></i></span></div>
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<span style="letter-spacing: 0.0px;"><i><span style="color: #f3f3f3;">The rights will cry and the rest will curl up</span></i></span></div>
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<span style="letter-spacing: 0.0px;"><i><span style="color: #f3f3f3;">And God won't take the time to sort your ashes from mine</span></i></span></div>
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<i style="letter-spacing: 0px;"><span style="color: #f3f3f3;">We zig and zag between good and bad</span></i></div>
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<span style="letter-spacing: 0.0px;"><i><span style="color: #f3f3f3;">Stumble and fall on right and wrong</span></i></span></div>
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<span style="letter-spacing: 0.0px;"><i><span style="color: #f3f3f3;">The tumbling dice and the luck of the draw just lead us on</span></i></span></div>
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<i style="letter-spacing: 0px;"><span style="color: #f3f3f3;">When I win the lottery</span></i></div>
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<span style="letter-spacing: 0.0px;"><i><span style="color: #f3f3f3;">Gonna buy all the girls on my block</span></i></span></div>
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<span style="letter-spacing: 0.0px;"><i><span style="color: #f3f3f3;">Silver-plated six shooters and a quart of the finest highland scotch</span></i></span></div>
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<i style="letter-spacing: 0px;"><span style="color: #f3f3f3;">When I win the lottery </span></i></div>
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<span style="letter-spacing: 0.0px;"><i><span style="color: #f3f3f3;">The rights will shake their heads and say</span></i></span></div>
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<span style="letter-spacing: 0.0px;"><i><span style="color: #f3f3f3;">That God is good but surely works in mysterious ways</span></i></span></div>
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<span style="letter-spacing: 0.0px;"><i><span style="color: #f3f3f3;">When I win the lottery</span></i></span></div>
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<span style="letter-spacing: 0.0px;"><br /></span></div>
Parker Liferhttp://www.blogger.com/profile/09892332065873441546noreply@blogger.com3tag:blogger.com,1999:blog-3866338636233091015.post-72738892266052257142015-06-29T18:37:00.002-07:002015-06-29T18:39:20.649-07:00Nautical Disaster<!--[if gte mso 9]><xml>
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<br />
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<i><span style="color: #262626; font-family: Arial; font-size: 13.0pt;"><br /></span></i></div>
<div class="MsoNormal">
<i><span style="color: white;"><span style="font-family: Arial; font-size: 13.0pt;">I had this dream where I relished the fray</span><span style="font-family: Arial; font-size: 13.0pt;"><o:p></o:p></span></span></i></div>
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<i><span style="color: white;"><span style="font-family: Arial; font-size: 13.0pt;">And the screaming filled my head all day</span><span style="font-family: Arial; font-size: 13.0pt;"><o:p></o:p></span></span></i></div>
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<i><span style="color: white;"><span style="font-family: Arial; font-size: 13.0pt;">It was as though I'd been spit here</span><span style="font-family: Arial; font-size: 13.0pt;"><o:p></o:p></span></span></i></div>
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<i><span style="color: white;"><span style="font-family: Arial; font-size: 13.0pt;">Settled in, into the pocket</span><span style="font-family: Arial; font-size: 13.0pt;"><o:p></o:p></span></span></i></div>
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<i><span style="color: white;"><span style="font-family: Arial; font-size: 13.0pt;">Of a lighthouse on some rocky socket</span><span style="font-family: Arial; font-size: 13.0pt;"><o:p></o:p></span></span></i></div>
<div class="MsoNormal">
<i><span style="color: white;"><span style="font-family: Arial; font-size: 13.0pt;">Off the coast of France, dear</span><span style="font-family: Arial; font-size: 13.0pt;"><o:p></o:p></span></span></i></div>
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<i><span style="color: white;"><span style="font-family: Arial; font-size: 13.0pt;">One afternoon four thousand men died in the water here</span><span style="font-family: Arial; font-size: 13.0pt;"><o:p></o:p></span></span></i></div>
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<i><span style="color: white;"><span style="font-family: Arial; font-size: 13.0pt;">And five hundred more were thrashing madly</span><span style="font-family: Arial; font-size: 13.0pt;"><o:p></o:p></span></span></i></div>
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<i><span style="color: white;"><span style="font-family: Arial; font-size: 13.0pt;">As parasites might in your blood</span><span style="font-family: Arial; font-size: 13.0pt;"><o:p></o:p></span></span></i></div>
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<i><span style="color: white;"><span style="font-family: Arial; font-size: 13.0pt;">Now I was in a lifeboat designed for ten and ten only</span><span style="font-family: Arial; font-size: 13.0pt;"><o:p></o:p></span></span></i></div>
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<i><span style="color: white;"><span style="font-family: Arial; font-size: 13.0pt;">Anything that systematic would get you hated</span><span style="font-family: Arial; font-size: 13.0pt;"><o:p></o:p></span></span></i></div>
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<i><span style="color: white;"><span style="font-family: Arial; font-size: 13.0pt;">It's not a deal nor a test nor a love of something fated</span><span style="font-family: Arial; font-size: 13.0pt;"><o:p></o:p></span></span></i></div>
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<i><span style="color: white;"><span style="font-family: Arial; font-size: 13.0pt;">The selection was quick, the crew was picked in order</span><span style="font-family: Arial; font-size: 13.0pt;"><o:p></o:p></span></span></i></div>
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<i><span style="color: white;"><span style="font-family: Arial; font-size: 13.0pt;">And those left in the water</span><span style="font-family: Arial; font-size: 13.0pt;"><o:p></o:p></span></span></i></div>
<div class="MsoNormal">
<i><span style="color: white;"><span style="font-family: Arial; font-size: 13.0pt;">Got kicked off our pant leg</span><span style="font-family: Arial; font-size: 13.0pt;"><o:p></o:p></span></span></i></div>
<div class="MsoNormal">
<i><span style="color: white;"><span style="font-family: Arial; font-size: 13.0pt;">And we headed for home</span><span style="font-family: Arial; font-size: 13.0pt;"><o:p></o:p></span></span></i></div>
<div class="MsoNormal">
<i><span style="color: white;"><span style="font-family: Arial; font-size: 13.0pt;">Then the dream ends when the phone rings</span><span style="font-family: Arial; font-size: 13.0pt;"><o:p></o:p></span></span></i></div>
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<i><span style="color: white;"><span style="font-family: Arial; font-size: 13.0pt;">"You doing all right?"</span><span style="font-family: Arial; font-size: 13.0pt;"><o:p></o:p></span></span></i></div>
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<i><span style="color: white;"><span style="font-family: Arial; font-size: 13.0pt;">He said, "It's out there most days and nights</span><span style="font-family: Arial; font-size: 13.0pt;"><o:p></o:p></span></span></i></div>
<div class="MsoNormal">
<i><span style="color: white;"><span style="font-family: Arial; font-size: 13.0pt;">But only a fool would complain"</span><span style="font-family: Arial; font-size: 13.0pt;"><o:p></o:p></span></span></i></div>
<div class="MsoNormal">
<i><span style="color: white;"><span style="font-family: Arial; font-size: 13.0pt;">Anyway, Susan, if you like</span><span style="font-family: Arial; font-size: 13.0pt;"><o:p></o:p></span></span></i></div>
<div class="MsoNormal">
<i><span style="color: white;"><span style="font-family: Arial; font-size: 13.0pt;">Our conversation is as faint a sound in my memory</span><span style="font-family: Arial; font-size: 13.0pt;"><o:p></o:p></span></span></i></div>
<div class="MsoNormal">
<i><span style="color: white;"><span style="font-family: Arial; font-size: 13.0pt;">As those fingernails scratching on my hull</span><span style="font-family: Arial; font-size: 13.0pt;"><o:p></o:p></span></span></i></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment-->Parker Liferhttp://www.blogger.com/profile/09892332065873441546noreply@blogger.com1tag:blogger.com,1999:blog-3866338636233091015.post-27295396725456227242014-06-24T09:59:00.000-07:002014-06-24T09:59:01.791-07:00Art Class<br />
This is a post I have long wanted to write, but I wasn't ready to give up the kind of personal details that lie herein. Over time, I've gotten much looser with such details, but this one is going to give a lot of people some super huge clues. Now let's see if I can make it through without crying.<br />
<br />
<a name='more'></a>***********<br />
<br />
There are a lot of standard tropes on Twitter. One common thread is the debate about the meaning of "passion" in science. People who talk of being "passionate" about their work are usually interpreted in some corners as using exploitative code language. Often such people are derided for promoting an unhealthy work ethic or expecting too much of their staff or questioning their dedication. Let me tell you what passion means to me.<br />
<br />
It is with all humility that I acknowledge the fact that some people have told me they find my story inspirational. Although I often fail, I try to keep my blog on balance positive. I think it's important to articulate the struggles associated with being a neuroscientist with P (or often really just a scientist), but I hope my regular readers recognize that my core philosophy and message is optimism. If you want to hear my best articulation of that message, read the post entitled <a href="http://parklifensci.blogspot.com/2013/11/learned-to-surf.html" target="_blank">"Learned to Surf"</a>. That spirit has defined how I respond to my condition, but it didn't just drop out of nowhere. There are experiences I have not yet shared on my blog that have shaped me every bit as much as P. I want to talk about what inspires me. I want to talk about my postdoctoral mentor.<br />
<br />
***********<br />
<i><br /></i>
<i>O Captain! My Captain! Rise up and hear the bells</i><br />
<i>Rise up—for you the flag is flung—for you the bugle trills</i><br />
<br />
He was more than my hero. He was a hero to my heroes. In an era of awe-inspiring neuroscience tools, he is one of the most important forebearers. He was one of the first to say "What if we could...?" He developed many tools that people continue to use and also prefigured many current trendy methods. But where he truly distinguished himself was in his ability to boldly and creatively use those tools wisely to answer fundamental scientific questions. If he were here today, he would be having a blast.<br />
<br />
<i>My Captain does not answer, his lips are pale and still;</i><br />
<i>My father does not feel my arm, he has no pulse nor will;</i><br />
<br />
The day he died, I was crushed that science would never be as fun again. My scientific world will always have a hole in his shape.<br />
<br />
***********<br />
<div>
<div>
<i><br /></i>
<i>Welcome to art class</i><br />
<i>And yes it does involve shaking your ass</i><br />
<br /></div>
</div>
I first took notice of his papers as a young graduate student. They were so alive with creativity and daring and cleverness and joy that it literally jumped off the page. It is impossible to overstate how compelling I found his work. It was exactly the kind of science that I have always aspired to: science that expresses who you are as a person. I felt I knew exactly what he was like without ever having met him yet. I thought of him as equal parts artist and scientist. Being early in my thesis years, I filed that memory away because I knew it would become important later.<br />
<br />
It did.<br />
<br />
I had occasion to meet the man near the end of graduate school. Once I did there was no other option but to join his lab. I'm not going to lie to you – I was as intimidated as fuck. I spent my first couple of months there feeling unworthy to be there with him and all the smart people around me. Going from 60 to 0 as a well-oiled grad student data machine to a fumbling new postdoc had me teetering on the edge of quitting science.<br />
<br />
But slowly I began to get it. He was one of the most inspiring individuals I have ever had the pleasure to encounter. He allowed us to feel invincible with him at our back, to be fearless and creative. Ironically, to do science as if we could lose the privilege at any time. He was and will always be my model for "passion", and I don't mean his life was only science. He passionately pursued fishing. He was passionate about his family. He was passionate about life. I had already learned all that by the time he got sick.<br />
<br />
It lasted about a year. The most surreal, gut wrenching, exhilarating and emotional year of my life was watching my scientific hero lose his battle with cancer. He never gave up thinking about the future and possibility. He stared into the lion's eyes with his head held high and never lost his joy for all things, including science. Watching that way to live and conduct your life's work is a memory that I will hold for a lifetime. And it is the source of my inspiration for dealing with my own comparatively inconsequential problems.<br />
<br />
<div>
<i>Why so serious?</i><br />
<i>When it's only your life that’s at stake</i><br />
<i>Why so serious?</i><br />
<i>When your life is the art that you make</i></div>
<div>
<i><br /></i></div>
<br />
<br />
<div>
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Parker Liferhttp://www.blogger.com/profile/09892332065873441546noreply@blogger.com7tag:blogger.com,1999:blog-3866338636233091015.post-65774834878233680282014-06-15T13:46:00.002-07:002014-06-15T13:47:45.147-07:00All My Friends<i>The ones who love us best</i><br />
<i>Are the ones we'll lay to rest</i><br />
<i>Visit their graves on holidays at best</i><br />
<i><br /></i>
<i>The ones who love us least</i><br />
<i>Are the ones we'll die to please</i><br />
<i>If it's any consolation I don't pretend to understand</i><br />
<br />
Once again, I go back to the lyrical well of Paul Westerberg and the Replacements. So much wisdom there. I've been thinking a lot about these lyrics lately. What I've been reflecting on is the last five years of my life, where it has gotten me, and what it has cost me.<br />
<br />
<a name='more'></a><br /><br />
<i>You spent the first five years trying to get with the plan</i><br />
<i> And the next five years trying to be with your friends again </i><br />
<br />
It's become increasingly clear that running my career in continuous crisis mode has taken a toll on my personal life. Virtually every personal relationship has suffered from neglect in favor of keeping my career afloat. The same is true for my health, which is not bad at all but could be great if I were able to take the time to take care of myself better. My kids aren't getting any younger and I haven't seen many close friends in a long time. This is not because I'm a power-hungry monster, but because I'm trying simply to keep my head above water.<br />
<br />
<i>And if I’m made a fool </i><br />
<i>If I’m made a fool</i><br />
<i>If I’m made a fool on the road</i><br />
<i>There's always this </i><br />
<i>And if I'm sewed into submission</i><br />
<i> I can still come home to this </i><br />
<br />
I'm thinking about this in the wake of yet another grant triage, one that will minimally forestall and possibly preclude my promotion. Yet another month in which my every waking hour is consumed with trying to please a group of people who could give a shit about me.<br />
<br />
I hope it's worth it. I hope someday I'll be able to work to earn back the closeness to the people I love the best. I'm so sorry.<br />
<br />
<i>Oh, if the trip and the plan come apart in your hand </i><br />
<i>You look contorted on yourself your ridiculous prop </i><br />
<i>You forgot what you meant when you read what you said</i><br />
<i> And you always knew you were tired, but then </i><br />
<i>Where are your friends tonight? </i><br />
<i><br /></i>
<i>Where are your friends tonight? </i><br />
<i>Where are your friends tonight? </i><br />
<i><br /></i>
<i>If I could see all my friends tonight </i><br />
<i>If I could see all my friends tonight </i><br />
<i>If I could see all my friends tonight </i><br />
<i>If I could see all my friends tonight</i>Parker Liferhttp://www.blogger.com/profile/09892332065873441546noreply@blogger.com1tag:blogger.com,1999:blog-3866338636233091015.post-88614476010098632952014-04-29T10:30:00.000-07:002014-04-29T10:30:59.144-07:00Shake it Out<div style="margin-bottom: 12px;">
To anyone who thinks I am being cute with the title of this post, I'm not. Yes I have P, I get it. This is as serious as a heart attack.</div>
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</div>
<a name='more'></a><i>Regrets collect like old friends</i><br />
<i>Here to relive your darkest moments</i><br />
<blockquote class="tr_bq">
"I can't really overstate what a huge step it is for me to open up about this stuff knowing that eventually people will link it to me. But at the end of the day, openness is my nature. The secret wears on me, and it pains me more and more to not level with the people around me. I'm not ready to go public yet, but I'm OK with where this blog inevitably leads. I'm not afraid anymore.<br />
<br />
<i>Here's where everything comes together</i><br />
<i>Either that or it all falls apart</i><br />
<i>Yeah, here's where the strings come in"</i></blockquote>
I wrote those words more than a year ago in a post entitled <a href="http://parklifensci.blogspot.com/2013/02/heres-where-strings-come-in.html" target="_blank">Here's Where the Strings Come In</a>. I can tell you the person who wrote them was in some major turmoil. No one has ever asked me which is my favorite blog post, but it's hands down that one. Favorite isn't the right word, but I'm prouder of that than anything I've ever written. I literally can't read it without being overwhelmed by emotion.<br />
<br />
Many of you may have noticed me playing with my pseudonymity of late, offering to depseud to anyone who ponied up $250 for my Parkinson's Unity walk. I'll admit it was a coy marketing move, and although I have every intention of still honoring any takers, I want my readers to appreciate how far I've come to be able to do that. It's all part of a willful effort on my part to continue loosening my grip on the secret that weighed me down for so long.<br />
<br />
It's no coincidence then that I pushed myself to do something relatively dramatic over the weekend. I came out to most of my Facebook friends as the author of <a href="http://bit.ly/1a7XXi4" target="_blank">this</a>. I felt very comfortable doing this because Facebook is of course a stalwart and eminently trustworthy guardian of our privacy.<br />
<br />
hahahahaha! .... haha... ha <wipes a tear><br />
<br />
No seriously, that was the point. It was like a child releasing a balloon to wherever it may float. With that I am done coming out and I am putting to rest a dark, lonely and paranoid episode of my life. I intend to maintain this alter ego as a tool to make a difference in people's lives. I've learned a tremendous amount about the power of multiple pseudonymous identities in social media, much of it from someone I consider a hero, blogger @drisis. And I will continue to use my story in my personal interactions as a way to show that we all have our crosses to bear, some of them in silence. You never now what someone is going through, so please be kind to one another. At the end of the day that's really all we have to define us as humans.<br />
<div style="margin-bottom: 12px;">
<i style="font-family: inherit;"><br /></i>
<i style="font-family: inherit;">I'm always dragging that horse around</i><br />
<i style="font-family: inherit;">All of his questions, such a mournful sound</i><br />
<i style="font-family: inherit;">Tonight I'm gonna bury that horse in the ground</i><br />
<i style="font-family: inherit;"><br /></i>
<i style="font-family: inherit;">Shake it out</i></div>
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Parker Liferhttp://www.blogger.com/profile/09892332065873441546noreply@blogger.com1tag:blogger.com,1999:blog-3866338636233091015.post-38523932739863554742014-04-13T19:29:00.000-07:002014-04-13T19:29:20.234-07:00Wolf Like Me<i>Hey hey my playmate</i><br />
<i>Won't you lay hands on me</i><br />
<i>Mirror my malady</i><br />
<i>Transfer my tragedy</i><br />
<br />
I was talking the other night with a friend who didn't know that I have P. After chatting a while, I disclosed this to zir and mentioned that I blog here. Ze responded, and I quote "wait what really holy shit!" Ze actually knew and read the blog but apparently didn't know it was me. Anyway, ze was excited because ze had been wanting to put me (or Parklifensci that is) in touch with someone I have more than one thing in common with. This was a funny coincidence because I was already mentally composing this post about connecting with other parks.<br />
<br />
<a name='more'></a><br /><br />
A while ago I wrote a <a href="http://parklifensci.blogspot.com/2013/02/all-young-dudes.html" target="_blank">post</a> that alluded to my experience attending a "Young Onset Parkinson's" support group. It actually made me feel really lonely. There was absolutely no one there who was remotely close to my age. Connecting with other people to whom we can relate is obviously one of the most important aspects of life for anyone. But it gets a measure more difficult to do that when you have a condition that's as uncommon as "P in your 30s". I have found a few kin at this point and I've had good interactions with them.<br />
<br />
However, I have another even rarer, lonelier condition: "P as a neuroscientist". I actually wasn't sure how many of these I would find, but it turns out there are a few and it's been very cool to contact them. I have even learned about one very famous neuroscientist whose work I have followed for years who has P, but I don't know if ze would be interested in hearing from me. If you personally know the person I am referring to (or indeed any P neuroscientist), please point them to my blog and tell them to feel free to email me.<br />
<br />
The real inspiration for this post is a project I have recently become involved in that will hopefully start to generate some productive output later this year. I had a really fun Skype conversation with one of these rare park neuroscientists not long ago and we discovered we have a a remarkable number of things in common. I agreed to join a group of parks engaged in neuroscience or a health profession that ze is assembling as a sort of think tank of people who can understand P from many perspectives.<br />
<br />
I definitely feel like this is the kind of thing I am in a very rare position to contribute to and it makes me feel good to do so. It even feels laden with the weight of destiny to an extent. But despite all that, I am most excited to make a personal connection with other members of my small breed.<br />
<br />
<i>My mind has changed </i><br />
<i>My body's frame</i><br />
<i>But god I like it...</i><br />
<i><br /></i>
<i>We're howling forever</i><br />
<i><br /></i>
<br />Parker Liferhttp://www.blogger.com/profile/09892332065873441546noreply@blogger.com2tag:blogger.com,1999:blog-3866338636233091015.post-83316076949771526772014-03-26T18:10:00.004-07:002014-03-26T18:10:47.356-07:00Kick<div style="font-family: Verdana; font-size: 16px;">
<i>I look around unsatisfied</i></div>
<div style="font-family: Verdana; font-size: 16px;">
<i>At what they're giving me</i></div>
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<i>Then I think to myself</i></div>
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<i>Is there someone else</i></div>
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<i>Who feels the same as me?<br />
</i></div>
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<i><br /></i></div>
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<i>Do you feel the same baby?</i><br />
</div>
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<i><br /></i></div>
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For the entire summer of 1987, my friends and I were obsessed with INXS' monumentally popular album Kick.</div>
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We listened to it a lot.</div>
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<a name='more'></a><br /><br />
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Let's just say that Michael Hutchence was not exactly a lyrical heavyweight. But it's a funny thing about the music of your youth. It gets buried in your subconscious mind and can come out at unexpected times, when you see it in a new light. It's happened <a href="http://parklifensci.blogspot.com/2013/07/the-pink-life.html" target="_blank">before</a> and it happened to me today.</div>
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<br /></div>
<div style="font-family: Verdana; font-size: 16px;">
<i>Sometimes you kick.</i></div>
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<i>Sometimes you get kicked.</i></div>
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<i><br /></i></div>
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As I was leaving from a weird day in the middle of a weird week, those words popped into my head and struck me as surprisingly deep. To me it's like a zen koan - a superficially simplistic aphorism that unfolds petal after petal of meaning like a fractal. </div>
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Yes I'm serious.</div>
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OK, I'll admit I'm at a unique point of juxtaposition that puts me in a frame of mind to think that way. The circumstances aren't important, but I think you'll get the flavor of what I'm talking about.</div>
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<br /></div>
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At the 0th order, it seems pretty stupid. Sack up man. You win some, you lose some. But wait a minute. Sometimes you kick.</div>
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Sometimes you score a victory. Sometimes you get your ass kicked. Sometimes you're the one doing the kicking. Sometimes you are all of these at once. Two of these happened to me this week already and the third is likely imminent. I'll leave it up to you to figure out which is which.</div>
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This puts me in an oddly emotional and conflicted state of mind. A state of mind that drove me to spend my entire trip home deeply cogitating on INXS lyrics. As the title track faded out, and the next song began, Hutchence exhorted me to "Come on down to the party!"</div>
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Not tonight Mike. I'm not in the mood.</div>
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Parker Liferhttp://www.blogger.com/profile/09892332065873441546noreply@blogger.com0tag:blogger.com,1999:blog-3866338636233091015.post-303823472963983852014-01-17T19:02:00.000-08:002014-01-17T19:02:04.321-08:00One Too Many Blows to the Head<span style="line-height: 19px;">Your job is to defuse a bomb. If it goes off, it would splatter the walls with the entrails of your career. </span><span style="line-height: 19px;">Oh and incidentally, walking away from the bomb would do the same. This post is about remaining cool and steady-handed while dealing with the bomb. </span><br />
<span style="line-height: 19px;"><br /></span>
<span style="line-height: 19px;">Also, you have P.</span><br />
<span style="font-family: inherit;"><i></i></span><br />
<a name='more'></a><br />
<span style="line-height: 19px;"><i>I!</i></span><br />
<span style="line-height: 19px;"><i>Don't!</i></span><br />
<span style="line-height: 19px;"><i>Want!</i></span><br />
<span style="line-height: 19px;"><i>To!</i></span><br />
<span style="line-height: 19px;"><i>Get back into the ring</i></span><br />
<span style="line-height: 19px;"><i>But I feel like these gloves are glued to my knuckles</i></span><br />
<div>
<br /></div>
<span style="font-family: inherit;">You need to be able swallow a lot of crap as a scientist. You're going to take some unbelievable kicks to the groin in paper </span>reviews<span style="font-family: inherit;">. And you'll be told by more than one study section that you're not productive enough to be worthy of a discussion about your grant. The people who tell you that you don't publish enough, the people who tell you your papers aren't good enough to publish, the people who make you fearful to try to publish without being perfect, the people that say "what the fuck is wrong with you? why don't you just publish <i>something?</i>", and the people who tell you your papers aren't in good enough journals, are the same people.</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">You see, it turns out there are a lot of shitheads standing </span>around telling you you're never going to defuse the bomb. That you never should have been given the job of defusing the bomb in the first place. Are we seriously going to waste precious time placing more trust in this shaky-handed clown?<br />
<br />
There are also some people who are telling you you can do it. They think. (you <i>can</i> do it, right? seriously don't fuck this up.)<br />
<br />
Then there are rare people who honestly know you can do it. They tell everybody to shut the fuck up and let you focus on the bomb. Keep them close. Also, you are one of those people. You have to be. Seriously, if you're defusing a bomb you need to have ice in your veins. You need to <i>know</i> that your bomb defusing skills are strong. You need to <i>know</i> that your bomb defusing plan is going to work. Keep your head down, shut out the shitheads, and believe in yourself.<br />
<br />
Sometimes, you pull out a key wire and everybody heaves a breath. And the shitheads start to pay attention. You haven't finished defusing the bomb yet, but you know you've got this.<br />
<br />
<i>I'm asking you Mary, please</i><br />
<i>Temper my hatred with peace</i><br />
<i>Weave my disgust into fame</i><br />
<i>And watch how fast they run to the flame</i><br />
<i><br /></i>
<i><br /></i>
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Parker Liferhttp://www.blogger.com/profile/09892332065873441546noreply@blogger.com4tag:blogger.com,1999:blog-3866338636233091015.post-32513553602075827872013-11-23T19:39:00.000-08:002014-04-26T14:41:38.854-07:00Learned to Surf<i>These are secrets the world sung to me truer than the truth…</i><br />
<i>It was music that gave the shove</i><br />
<i>And resolved in music we shall breathe</i><br />
<br />
I went to an awful lot of rock shows in college. I loved feeling the energy in the sweaty club and my ears filled with pummeling sound. Though it was exhilarating, I was never much for moving around, or "dancing" as it were.<br />
<a name='more'></a><br />
About two weeks after my diagnosis, I went to an Animal Collective show and it was an epiphany. It was a time when I was really grappling with what P would mean for my future. In every possible way. For a while, everything I did became a moment to reflect on whether a day would come when I couldn't do that thing anymore. I clearly remember having such thoughts in that period when I was swimming at the beach with my kids. I had a similar thought at the concert. Putting aside the fact that I am 40 and old enough to be many of the attendees' dad, I wondered how many more of these I would be able to do.<br />
<br />
Then the music started.<br />
<br />
If any of you have ever seen Animal Collective (it was a first for me), you have an idea what it was like. The atmosphere and sound was one of the most joyful and life-affirming things I've ever experienced. And I realized: I am here now. So I danced.<br />
<br />
*****<br />
<i><br /></i>
<i>I can't hold my breath anymore</i><br />
<div style="margin: 0px;">
<i>I stopped sinking and learned to surf…</i></div>
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<i>Heavy like the rocks we carry</i></div>
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<i>I stopped swimming and learned to surf</i></div>
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<i><br /></i></div>
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It's something of a cliche for people to say "<insert music> [changed | saved] my life". It may be a cliche but it's true for me so many times I have lost track. I've mentioned the post title song in at least one past post, but I never really explained why it's so monumentally significant to me.</div>
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I first encountered the song "Learned to Surf" by Superchunk at a time of intense self doubt. I was already overwhelmed by building a lab, repeated grant rejections, and whether I had risen to the level of my own incompetence, and these were beginning to collide with new doubts about the future of my health. Sometimes a piece of art really touches something off in me that just crystallizes things that were floating around in my head and pushes me to see a new perspective. I listened to this song many times because something about those few lines was totally compelling to me. I struggle to articulate why, but it is no exaggeration to say that I believe those lyrics capture one of the great secrets to life. They also delineate the nucleus of the primary message I hope everyone can take away from my blog.</div>
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To me that message is that life is awfully hard when you struggle against the current to make your life into what you think it ought to be instead of making the most of what it actually is. To many people this probably sounds like dopey positive thinking BS. To others it may sound like giving up. All I can say is to my mind it is neither of those. It's about letting go of the rocks.</div>
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Self defeating thoughts, worries about the future, bitterness, fear. We sometimes cling to these tenaciously despite the fact that they are dragging us down. Maybe I don't have what it takes to make it in science. Maybe the clowns on my study section that triage my grants are right. Or maybe I will establish myself and my career will end someday because of P. Maybe I'll be hit by a bus tomorrow.</div>
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<br /></div>
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I could worry about this stuff. Likewise, I could mope about what I may be robbed of by P. But you know what?</div>
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<br /></div>
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I. am. here. now. I'm letting go of the rocks and I'm gonna dance.</div>
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<i><br /></i></div>
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<i>Time and transition is a wave that will put you overboard</i></div>
<i>Where the darkness is a bed and you can sleep</i><br />
<i>'Til someone tells you that they know you and they do</i><br />
<div>
<i><br /></i></div>
<div>
Thank you for "knowing me", Mac. Thank you for more than you will ever know.</div>
Parker Liferhttp://www.blogger.com/profile/09892332065873441546noreply@blogger.com5tag:blogger.com,1999:blog-3866338636233091015.post-5361252385065850572013-11-01T18:20:00.000-07:002013-11-01T18:20:33.219-07:00Let's Explode<i>I don't wanna live forever<br />
When the sky is full of little holes<br />
Exploding as they take my picture<br />
Let's explode</i><br />
<br />
The day draws near now, so I've had a lot on my mind. I've reached an emotional place that I haven't been to since the time when I wrote <a href="http://parklifensci.blogspot.com/2013/03/cant-hardly-wait-pt-2.html" target="_blank">this post</a>. You may feel the death metaphor is recycled, but there really is no turning back this time.<br />
<br />
<a name='more'></a><br /><br />
For the past few months, I've been working on what will ultimately be a highly visible project. My participation is still anonymous, but I think it will light the fuse on the charges I set earlier this year. Enough people will see it who know just enough of the few people I told, or know just enough of the details of my story to put the pieces together. I have to think that those who have been paying attention will find little surprise in my identity, but this will definitely be the end of my pseud for all intents and purposes. I'm going to have to change the masthead because it won't be so secret anymore.<br />
<br />
That the project's release coincides with the annual Society for Neuroscience meeting is extremely intimidating. I am really self conscious at meetings because I imagine there are people who can spot something off with me from a mile away. In reality, I'm sure 99.9% of people really don't give a rat's ass, but believe me it's always in the back of my head.<br />
<br />
Anyway, I'll be at <a href="http://scientopia.org/blogs/drbecca/2013/09/06/sfn-goers-save-the-date-for-banter/" target="_blank">SFNBanter</a>. I shouldn't be too hard to spot - I'll be the one trying not to look gimpy. Say hello if you like. I'm happy to talk.<br />
<br />
<i>Hit "SELF DESTRUCT</i><i>"</i><br />
<i>
It's marked especially<br />
It's easy to read<br />
We'll light one up and celebrate our disease</i>Parker Liferhttp://www.blogger.com/profile/09892332065873441546noreply@blogger.com8tag:blogger.com,1999:blog-3866338636233091015.post-88220239092954350112013-10-23T19:34:00.000-07:002013-10-23T19:34:02.029-07:00Big Black NemesisSo maybe you saw my tweet about it, but the other day I read a really gut wrenching post that reminded me of a lot of feelings I haven't confronted recently. The author also put hir finger on a particular confluence of negative emotions that I can really relate to but never thought about so explicitly.<br />
<br />
<a href="http://bit.ly/1624MB0">Go read it.</a><br />
<br />
I'll wait.<br />
<br />
<a name='more'></a><br />
<br />
I don't want to take anything away from the author's writing by restating the point too much, but it's nasty business when the imposter syndrome we all seem to have coalesces into a perfect storm of dread with a bona fide, honest-to-goodness secret you *really* don't want getting out. A secret that you are sure will destroy all that you've worked for. Suddenly, the inchoate sense that you are on the brink of being found out takes a new and concrete form. The Voltron lions of Insecurity, Self Doubt, Fear of Failure, and Paranoia click together with their sinister partner Debilitating Chronic Disease Lion to create a giant Terrorbot.<br />
<br />
It's a dark place, and almost nobody I disclosed my P to gets what it's like. I'm not sure if they're just trying to be reassuring, but almost invariably the first question after "I was terrified to tell anyone about P" is an incredulous "Why?"<br />
<br />
Why was I so sure letting my secret leak out would torpedo my career? Why did I worry everyone would flee my lab? Why was I afraid no one would give me a long-term grant?<br />
<br />
Most people seem to think these worries were silly. I don't know if I have an answer that they would understand, but the author of this post understands. Thank you "S". This time it is you who have inspired me.<br />
<br />
<i>Many miles away</i><br />
<i>There's a shadow on the door</i><br />
<i>Of a cottage on the shore</i><br />
<i>Of a dark Scottish lake</i><br />
<br />
<i>Many miles away</i><br />
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Parker Liferhttp://www.blogger.com/profile/09892332065873441546noreply@blogger.com1tag:blogger.com,1999:blog-3866338636233091015.post-54139680943227159522013-09-11T07:12:00.000-07:002013-09-11T07:13:57.248-07:00Speaking in Tongues<span style="font-family: Verdana, sans-serif; font-size: 12.0pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;">On the lighter side of things, I accidentally left my voice recognition software on while talking to a colleague. Here's what I found embedded in the manuscript I'm working on. I'm actually wondering if we should leave it in.</span><br />
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<span style="font-family: Verdana, sans-serif; font-size: 12pt;">"higher-order experimentYou might deserve
reportedly works but the guy he is pretty pervasive to so he is not in his life
happen leaders and is hysterical species that is lit this would you are all in
the nice continuous stimulation if he is or is you really see any state she had
so and that he’s a very cursory grammar weight this is being is not necessarily
his heart is now best saved easy to use even article will let fly a easy and
when I like teasing a nice cities are going to fluctuate UTC XP. With both dead
and but my point is that single rate is something you can see it and it hasn’t
written a assessed under the weather is other swimmers state your model and
then that is a bit more property is seeing the same as if they had to do is
associate was safe to totally dismiss those results are if you you got a result
you describe there on that certainly cast out as the larvae have some doubt
about because and because it’s little to receive this in the may synergize the
way companies I don’t know what" </span>Parker Liferhttp://www.blogger.com/profile/09892332065873441546noreply@blogger.com1tag:blogger.com,1999:blog-3866338636233091015.post-92036225241310969782013-09-10T05:54:00.000-07:002013-09-10T05:54:17.632-07:00The Black AlbumNot surprisingly, I am going to start with a musical analogy.<br />
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In 1987, following the critical and commercial success of <i>Sign of the Times</i>, Prince was on the verge of releasing a deeply funky but dark, misogynistic, and violent album to be entitled <i>The Funk Bible</i>. Then, a week before release, he pulled the album. Due to the fact that the handful of promo copies that went out were in an unmarked black sleeve, the record became known as <i>The Black Album</i> and was widely bootlegged. A few months later, he followed up with a poppy fruit loop of a record called <i>Lovesexy</i> which featured him naked on the cover in a picture that had to have been taken at a glamour shot at the local mall.<br />
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Legend has it that Prince became dissatisfied with the tone of The Black Album and had second thoughts about releasing something he perceived as negative into the world.<br />
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If you read this blog regularly, you probably noticed a few missing entries. I'm pretty sure that in the blogging world this is uncool but frankly I am unconcerned with such 'blogma' (you see what I did there). Yesterday I got a lot of hits for what I had written about glam journals. I still believe in what I wrote, and you can still email me about it, but I decided it doesn't belong here.<br />
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I write best and most prolifically when I am emotional about something. For the last little while, I have been relatively comfortable with my P, and other things have been bothering me instead. I wrote about those things in response, but I feel it was a mistake to conflate those with the original purpose of this blog. There is some deeply personal material here that I want people to read and think about. Every entry like the last two puts space between that material and a new reader to my blog and disrupts the narrative of my P experience. A lot of new readers came through yesterday and only one read through to <a href="http://parklifensci.blogspot.com/2013/07/the-pink-life.html" target="_blank">here</a>. It already made me uncomfortable to get such a huge response to something snarky and muckraking when that's not what my blog is about at all. I have certainly been accused of negativity, but this is no place for cynicism.<br />
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Then I got an email last night from <a href="http://parklifensci.blogspot.com/2012/10/you-should-write-after-standard.html" target="_blank">the other "P"</a> congratulating me on an upcoming writing project that grew out of this blog. I thought about what she said to me when I told her my diagnosis. I thought about the voice she drew out of me. I thought about all the emails I've gotten from people who also have P. I thought about the young postdoc who confessed to me that ze was terrified to tell hir PI that ze has similar condition. Then I thought, there are a lot of blogs about the downside of glam, but there aren't that many blogs for that postdoc<b>. </b>That's what the other P knew from the start and that's what I needed to be reminded of.<br />
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"S", if you're still listening I'm sorry. Anyone else who doesn't understand, please read the whole blog before you judge.Parker Liferhttp://www.blogger.com/profile/09892332065873441546noreply@blogger.com1tag:blogger.com,1999:blog-3866338636233091015.post-76071933460139025892013-07-09T19:13:00.000-07:002013-07-09T19:13:06.921-07:00The Pink Life<i>Why do you seek, why do you seek the Pink Life?</i><br />
<i>How do you sleep, how do you ever lie down?</i><br />
<i>Why do you need, why do you need your Science?</i><br />
<i>Why am I your only outside line?</i><br />
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I know it's been a while since I blogged. The last time I did I was pretty happy with the way things were going, and I still am in a lot of ways. And I'm still having a tremendous amount of fun. I've also had some recent blows to the groin and I've been working like an animal, still feeling like I'm running in syrup or quicksand, overwhelmed by a mountain of work. It's been an exhilarating, exhausting month that left me pretty drained. It was in this mood that I had the following realization.<br />
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Science is for me like an abusive relationship.<br />
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I have long half joked that I am in some way cursed by my love for what I do. It has led me, as it leads most of us, to put up with some serious life compromises. I don't have an answer for those that wonder why we do this other than that the deeply rewarding thrills I draw from the best aspects of my job outweigh the shit I have to swallow.<br />
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<i>See the stone set in your eyes</i><br />
<i>See the thorn twist in your side</i><br />
<i>I wait for you</i><br />
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Late in this marathon run of grant deadlines, tantalizing emerging discoveries, and frantic manuscript preparation, while driving home after my kids were already in bed and I was nearing crash mode the U2 song "With or Without You" came up on my iPhone and I heard the song in a way I never had before.<br />
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To say the least the lyrics to the song are elliptical, drenched in symbolic imagery, with Bono shifting the pronouns "she", "me" and "you" interchangeably. The narrator is tortured yet lustful, but who is he addressing? A mercurial woman? His fans? God? Maybe Bono is speaking to himself?<br />
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<i>Sleight of hand and twist of fate</i><br />
<i>On a bed of nails she makes me wait</i><br />
<i>And I wait without you</i><br />
<i>With or without you</i><br />
<i>With or without you</i><br />
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At the risk of veering off a hokey and pretentious cliff with this post, I can honestly say that in that moment, that haze of exhaustion, I felt he was articulating how I feel about not my "job" but Science. I feel like I'm constantly waiting. Perpetually suspended at a critical juncture and success is only just around the corner. First it was getting into grad school, then it was finishing my thesis, then it was getting my postdoc work off the ground, then it was getting a job, then it was getting my first grant, then get my first paper, then get promoted… All the while feeling as if I could just get to the next level, all my problems would be solved.<br />
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<i>Through the storm we reach the shore</i><br />
<i>You give it all but I want more</i><br />
<i>And I'm waiting for you</i><br />
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It's taken me a long time to get to the insight that that will essentially never happen. The work will never be "finished", and Science will keep swallowing as much of my attention, my thoughts, my sleep, my life as I allow. Its appetite seems infinite and my obsession drives me and at times consumes me. At the same time, my ego is regularly battered by setbacks, failure, and disappointment and I have to wonder: When are things going to break through? Will they?<br />
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<i>My hands are tied</i><br />
<i>My body bruised, she's got me with</i><br />
<i>Nothing to win and</i><br />
<i>Nothing left to lose</i><br />
<i>And you give yourself away</i><br />
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Please don't misunderstand me - I have had some great fortune to make it as far as I have to this point, and I feel so very graced to be able to do a job that I am so passionate about. I truly see my science as an extension of my core personality. I consider it a form of self expression not that different from the work of an artist or musician, and that is a rare and special thing to me. I should also say that I feel particularly lucky to be at my institution, which is uniquely supportive and an ideal environment. This is about me and my relationship to my muse. It's a rocky one at times and this is one of those times. But I'm convinced this is my destiny and we've been through the fire to get here against the odds and all logic. I'm not even talking about P.<br />
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<i>With or without you</i><br />
<i>I can't live</i><br />
<i>With or without you</i>Parker Liferhttp://www.blogger.com/profile/09892332065873441546noreply@blogger.com2tag:blogger.com,1999:blog-3866338636233091015.post-45767584987013170732013-04-30T19:03:00.001-07:002013-04-30T19:05:15.262-07:00New Day RisingI realize it's been a while since I wrote my last entry, but I'm happy to say I've been very busy doing things other than worrying about my P and whether it will sink my career. (Instead, I now expect that if that does happen it will be as a result of the current funding climate. That's psychological progress!) I guess it's no surprise that I was most motivated to blog when my grapple with whether to at least partially leave the closet was most intense. Things have been going really well and I have welcomed the chance to focus on other things for a change.<br />
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In contrast to the pessimism I felt in past months, things have been looking relatively positive career-wise. Recently, I have spent some time traveling and presenting my lab's latest work to colleagues with encouraging responses, and I am working with my trainees to get our first couple of papers into submission. I also will sit on my first grant review panel, which has been an eye opening experience. Most of my evenings have been spent turning the crank on these endeavors instead of interweaving my medical situation with musical references<br />
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With regard to the atmosphere at work, people were apparently shocked at first, but I have been pleasantly surprised with how quickly P has become a non-issue. One modestly weird thing is wondering who knows. I kind of expected (even counted on) the news to spread quickly since TSRU is a hotbed of gossip, but I get the distinct impression it hasn't especially. I suppose this isn't the kind of gossip anybody feel great about spreading when compared to who's sleeping together. Whether or not someone knows, I can't tell you what a relief it has been to let my Freak Flag fly without worrying whether someone will see something. FF is relative though I guess since one of my colleagues joked (I hope) that he didn't really believe that I have anything wrong with me. Now that's a change - proving rather than hiding I have P.<br />
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<br />Parker Liferhttp://www.blogger.com/profile/09892332065873441546noreply@blogger.com3tag:blogger.com,1999:blog-3866338636233091015.post-50057954066063918592013-03-25T20:13:00.000-07:002013-03-25T20:14:39.962-07:00Don't Tell a SoulFor anyone who was wondering, I intend to keep this blog anonymous. I showed it to some people and told them it's me, and as a publicly P-having PI, if you care to know who I am you will eventually be able to do your research to ID me. Nonetheless, it will be a lot easier to write from behind a curtain, even if it's translucent. That said, since I'm growing less uptight about getting busted, I thought I'd share some stories I held back from writing about in the past because they are specific enough to give me away if the right people read them. These are instances when I really just wanted to drop the charade and scream out that I have P. I think they give a good sense about how occasionally surreal my life became.<br />
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The first time I really felt the intense awkwardness and pressure of having a secret occurred when I returned to the Major Urban Medical Center where I was diagnosed to participate in a study. This is something I try to do periodically because I think it's a good deed and I am always interested in what they are looking for.<br />
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Anyway, I walked into the movement disorders clinic, which I guess occupies a whole floor in the neurology building at MUMC. So bear in mind that there is really no reason for anyone who isn't an employee to be there unless they or a companion have a movement disorder. After checking in at the desk I walked around the corner into the waiting room.<br />
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The room was empty except for two people. One of those people was someone I know.<br />
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It wasn't just someone I knew - it was actually a person I knew from my field. Someone I had spoken with at a meeting the previous year and tried fruitlessly to recruit to join my lab as a postdoc. Ze was someone I knew well scientifically, and ze knew me, but we have no personal relationship. If I was going to start breaking the news about my P to the scientific community, it wasn't going to be with them. The following exceptionally painful conversation ensued.<br />
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<b>Star Student Who Turned Me Down:</b> "Hey. Parker."<br />
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<b>Me:</b> <looking up in surprise> "Ohhhh...hhey SSWTMD." <...awkward silence...> "Are you doing a postdoc at MUMC?"<br />
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<b>SSWTMD:</b> "No, I'm in Bigshot Neuroscientist's lab at Nearby Elite University. I'm here with my dad" <points to older man sitting next to SSWTMD><br />
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<b>Me:</b> <blinking> <considerably more AS><br />
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<b>SSWTMD: </b>"ummm... small world"<br />
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<b>Me:</b> "yup"<br />
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After a bit more blinking and awkward silence, I took a seat. aaaand... brief agonizing conversation terminated. It was not lost on me that this would not likely be the last time something like this would happen. Ugh.<br />
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Incidentally, if you are by some chance reading this SSWTMD, I'm really really sorry for that. And I hope your dad is doing well.<br />
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The second story was an interaction with One of My Trainees. We were discussing another scientist that we had met who had a minor handicap that limited their potential for manual dexterity. I should note that a lot of the techniques that my lab uses regularly require that you are good with your hands. OoMT questioned whether ze could perform such techniques or would be limited by their handicap. I'm not going to lie to you this really grated on me. I am constantly telling my people that good hands are not primarily about manual dexterity, but about adapting techniques so that they work for you and (importantly) attention. to. detail. Case in point, I have fucking P! And I perform these techniques quite well so far. This would have been an illustrative point to make but I had to bite my lip.<br />
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Incidentally, if you are by some chance reading this OoMT, sorry. No hard feelings - I'm over it :)<br />
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The third and final story is the most surreal and the one where I most felt I missed an opportunity. Occasionally at TSRU a situation presents itself calling for the faculty to mingle with some Insanely Rich People. My wife and I found ourselves invited to dinner at the home of Very Famous Scientist, where our job was to talk to the IRPs, who are often very interested in science. It was a crazy scene. Neither before nor since have I have ever been in a room with anywhere near as high a density of ascots as was on display that evening. Maybe I hallucinated this, but I swear I saw a guy wearing a captain's hat like Thurston Howell III. Maybe there was a monocle, but I'm not sure. Much of dinner was spent talking to NYT Best Selling Thriller Author and his wife.<br />
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Anyway, later Cool Assistant Professor Colleague and I found ourselves in a long and really interesting conversation with a wealthy businessman whose adult children were born with a neurological condition. This is often the way that these laypeople get drawn into science, but I have to say the vast majority that I have spoken with are really sharp, are deeply interested in science, and appreciate the critical value of basic research.<br />
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As CAPC and I were engaging the man, my wife turned away to chat with VFS's wife. While she did that, IRP turned to me and said the following:<br />
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"Parker, you're a neuroscientist. What do you know about Parkinson's disease?"<br />
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IRP and CAPC each looked at me and awaited my answer. I wanted to tell my friend and colleague what I was going through. I wanted to look IRP in the eyes and say: "Funny you should ask that. Not only am I a neuroscientist, but I also have P." I wanted to launch into an eloquent monologue putting a personal face in the science of P. I wanted to conclude by saying "And that is why the basic brain research we do at TSRU is so important."<br />
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I did not do or say any of that. Instead I proceeded with a dispassionate yet accessible description of the pathological basis and characteristic symptoms of P. It was an intellectually engaging conversation and like I said, IRP was a sharp guy, but it wasn't the conversation it could have been. Incidentally, around this time my wife turned back from her separate conversation to find that we were discussing P and silently freaked out wondering how this happened and how I was feeling about it.<br />
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I hope this doesn't sound mercenary or cynical, like I was trying to get the guy to open his wallet. Not at all. Rather I am disappointed that I let a chance to make a personal connection for this man with P, to educate people about it. This is one of the main reasons I have decided to stop hiding.<br />
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<br />Parker Liferhttp://www.blogger.com/profile/09892332065873441546noreply@blogger.com2tag:blogger.com,1999:blog-3866338636233091015.post-1038959496068377672013-03-19T19:17:00.000-07:002013-03-19T19:20:17.052-07:00Can't Hardly Wait pt. 2Back to the mysterious post a few days ago. I didn't really want to write any details about what I was thinking and what I was planning to do until it was over with. But if you know what the song is about, I can understand being worried. One of my friends did know and sent me a concerned email: "You doing OK?". I explained the post to him, and I'm going to try to explain to you.<br />
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Bear with me. I promise this ends well.<br />
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"Can't Hardly Wait" (at least this early version) is about suicide. It's written from the perspective of a guy about to throw himself off a water tower. For me it perfectly captured my breathless anticipation of freedom from pain and isolation through a potentially self-destructive leap. Even the title, as a double negative, underscores the sense of ambivalence for the narrator. I was planning to come out of the P closet at work.<br />
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As I tried to convey in the closing lines of <a href="http://parklifensci.blogspot.com/2013/02/heres-where-strings-come-in.html" target="_blank">this post</a>, leading up to the fruition of my long-planned revelation, I held a fear that I was going to foolishly pull on the thread that would unravel my career. I don't mean to be dramatic, but in my more fearful moments it felt a little bit like being driven to career "suicide". And yet I was eager and ready to go through with it.<br />
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On another level, the song resonated with me in that I felt (and indeed it feels more so now) as though I was going to kill the old fearful and secretive me to be reborn in a new peace with my circumstances. Indeed, what happened was something close to that.<br />
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In the past two days I talked to my chair, informed institutional leadership, emailed my close colleagues, and broke the news to my lab. Everybody expressed complete surprise and the outpouring of positive support was really gratifying. I have really special colleagues at Top Secret Research University, and they are one of the many reasons I am glad to be here.<br />
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After more than 25 years of fandom, Paul Westerberg is still speaking to me with his lyrics. You can probably tell that music is really important to me. For my whole life, it has carried me through my darkest weakest times. Thank you Mac McCaughan. Thank you Elvis Costello. And thank you Paul Westerberg.<br />
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<i>Music is my savior</i><br />
<i>I was maimed by rock and roll</i><br />
<i>I was tamed by rock and roll</i><br />
<i>I got my name from rock and roll</i><br />
<br />Parker Liferhttp://www.blogger.com/profile/09892332065873441546noreply@blogger.com4tag:blogger.com,1999:blog-3866338636233091015.post-46578112329104764552013-03-16T16:38:00.000-07:002013-03-16T16:38:31.693-07:00Can't Hardly Wait<i>Climb on to the top </i><br />
<i>of this scummy water tower, screamin'</i><br />
<i>I can't hardly wait</i><br />
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I hear you PWParker Liferhttp://www.blogger.com/profile/09892332065873441546noreply@blogger.com5tag:blogger.com,1999:blog-3866338636233091015.post-70774511341453482072013-03-11T08:38:00.000-07:002013-03-15T19:11:03.028-07:00Source Tags and Codes<br />
I'm going to break from the usual fare for two bits of metacommentary. Occasionally I get some feedback on the blog from people close to me (ok mostly my wife).<br />
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One thing she and other people have remarked on is the feeling that my blog is "dark" and "a downer", which is mostly of note because it really contrasts both with my personality and my actual prevailing attitude towards my P. I don't want anyone to get the idea that I'm on the edge or anything. But the blog is for expressing a side of me that doesn't often see the light of day. The full extent of my feelings is much more balanced and I truly have something of sense of humor about it, even though it may be a little gallows.<br />
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The other critical comment she offered was that I make a lot of musical references that may be lost on people. I guess not everyone realizes that every post title is a musical allusion, or knows the source of the lyrics I quote. For instance, surprisingly few people know where the dogs come from. People ask a lot why I chose them and if they are supposed to symbolize something. In fact, they are taken from the cover of the 1994 Blur album <a href="http://en.wikipedia.org/wiki/Parklife" target="_blank">"Parklife"</a>, which is the blog's namesake. I just really like the image, and I guess it is evocative. My mother thought it was disturbing<br />
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Aesthetically, I am not crazy about putting a credit right after the lyrics in a post, but I think in the future I will do so in the comments. For anyone interested, here is a breakdown of all the unexplained references in each post:<br />
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<b>My Mind Holds the Key</b> - The post title is a line from The Arcade Fire's song "My Body is a Cage", which is played in the embedded YouTube video.<br />
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<b>The Worst Thing About Living a Lie is Just Wondering When They'll Find Out</b> - The title is a line from the Tune-Yards song "My Country".<br />
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<b>Heavy Like the Rocks We Carry</b> - The title is a line from the Superchunk song "Learned to Surf" which I read as about learning to stop struggling against life and instead ride the waves. The lyrics in the post are from the same.<br />
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<b>My Drug Buddy</b> - The title is the name of a Lemonheads song. Steve Albini is a deeply cynical record producer and lead singer/guitarist for the underground 80s band Big Black. He wrote the song "L-DOPA" in reaction to Oliver Sacks' account of his experiences administering the drug, as depicted in the film "Awakenings".<br />
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<b>Nice New Outfit</b> - The title and lyrics come from the Fugazi song "Nice New Outfit".<br />
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<b>All the Young Dudes</b> - This is the name of a 1972 Mott the Hoople song written by David Bowie.<br />
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<b>Here's Where the Strings Come In</b> - The opening quote is another reference to "My Body is a Cage". The title and end quote are taken from the Superchunk song "Here's Where the Strings Come In".<br />
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<b>Veronica</b> - This post references an Elvis Costello song called "Veronica" which he wrote about his grandmother, who was suffering from Alzheimer's.<br />
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The title of today's post is the name of an album by the band ...And You Will Know Us by the Trail of Dead.<br />
<br />Parker Liferhttp://www.blogger.com/profile/09892332065873441546noreply@blogger.com0tag:blogger.com,1999:blog-3866338636233091015.post-7681718439829643412013-03-01T19:13:00.000-08:002013-03-01T19:13:16.995-08:00VeronicaI have made allusions several times on the blog about the strange subjective experience of slowly losing control of my arm, hand, and fingers. I am particularly fascinated by the 'freezing' I experience sometimes, in which I attempt to lift my hand from what it's doing and it just doesn't want to go along. I have to put effort, even <i>focus</i> or <i>concentration</i> into getting it to move. This to such a degree that I have to pause whatever else my brain is doing (including talking or thinking) to get things going. I must confess sometimes when no one else is around, I will just grab it with my other hand and actually move it.<br />
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I describe it this way to emphasize that sometimes movement for me requires mental effort as opposed to physical effort. For many people, particularly older folks, P advances to such a degree that it takes all the focused will they can muster to move a few steps. Someday in the distant future that may be me. I am able to reflect on this, and observe this, yet I cannot achieve mastery over it.<br />
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It may seem like a leap, but this causes me to reflect on what it's like to be trapped inside a mind gone rogue. As one begins to lose one's ability to interact with the world, as one's faculties for clear perception and cognition are stripped away, what remains? What fearful and lonely shreds of humanity pulse within the core of a mind fogged by mental illness?<br />
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I read one painfully honest view of this question from an anonymous Harvard student grappling with schizophrenia, <a href="http://www.thecrimson.com/article/2013/2/21/anonymous-schizophrenia-help/" rel="nofollow" target="_blank">published in the Harvard Crimson this week.</a> The piece touches on many issues that relate to our treatment and views of the mentally ill, but I took special note of the following quote:<br />
<blockquote class="tr_bq">
"What they never tell you about schizophrenia is that you never really
believe it, internalize it, identify with it. Mornings are agonizing
because every day in the haze of waking up I briefly remember all over
again who I am and what I have lost. I remember the friends that I am
terrified will see me differently if I tell them; I remember that on my
bad days I scare people in class and on the subway; I remember that the
academic career for which I had worked is now improbable. I remember
that the measure of success for too many of my days will be that I have
not killed myself."</blockquote>
This belies the common view of the mentally ill as delirious and unaware, and is very sad to me. It makes me also think of my grandmother, who for many years has suffered from Alzheimer's disease. She frequently evinces confusion about where she is and when she is and who the people around her are. She lashes out and says unspeakably hurtful things to family members. It is very painful to watch, but what about to experience? I imagine maybe somewhere in there is my grandmother, and maybe she's scared.<br />
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<i>Is it all in that pretty little head of yours? </i><br />
<i>What goes on in that place in the dark? </i><br />
<i>Well I used to know a girl and I could have sworn </i><br />
<i>That her name was Veronica </i><br />
<i><br /></i>
<i>Well she used to have a carefree mind of her own</i><br />
<i>And a delicate look in her eye </i><br />
<i>These days I'm afraid she's not even sure </i><br />
<i> If her name is Veronica</i>Parker Liferhttp://www.blogger.com/profile/09892332065873441546noreply@blogger.com6