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March 7, 2007

BehindTheMedspeak: Steven Gulie is 'The Terminal Man'

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In one of the most gripping true-life medical narratives I've ever come across, Steven Gulie (above and below), a senior technical writer at Apple with Parkinson's disease, recounted in the latest (March, 2007) issue of Wired magazine what it was like to have electrodes planted deep in his brain through holes in his skull — while he was wide awake.

Gulie's account is a raw, honest and unflinching report about how little us doctors care about you — and why, if you're to get the very best results possible, that apparently inhuman, cold attitude is not an option but, rather, a necessity.

Long story short: If your neurosurgeon is psychologically devastated when a patient dies on the table and then finds her- or himself unable to sleep that night, well, that's all very warm and caring — but what if you're the first case on the schedule the next morning?

Excerpts from Gulie's remarkable piece follow.

    A Shock to the System

    To slow the progress of Parkinson’s disease, doctors planted electrodes deep in my brain. Then they turned on the juice.

    I'm lying in an operating room at the Stanford University hospital, head shaved, waiting for my brain surgery to begin. Sure, I feel anxious, but mostly I feel crowded. There are 10 people milling about, tinkering with instruments and examining me. It’s an impressive crew, including a neurosurgeon and his fellow, a neurologist and her fellow, an anesthesiologist, an experimental physicist, and a graduate student in electrical engineering. That’s right, a physicist and an electrical engineer. Directly behind me, out of my sight, is the star of the show, chief neurosurgeon Jaimie Henderson: 44 years old, tall, erudite, and handsome. On my right, flexing my hands, is neurologist Helen Bronte-Stewart: brisk, smart, and beautiful. In fact, nearly everyone is not only brilliant but also pretty enough to play themselves in the movie version of this story. I call them Team Hubris.

    Team Hubris is installing a deep brain stimulator, essentially a neurological pacemaker, in my head. This involves threading two sets of stiff wires in through my scalp, through my cerebrum — most of my brain — and into my subthalamic nucleus, a target the size of a lima bean, located near the brain stem. Each wire is a little thinner than a small, unfolded paper clip, with four electrodes at one end. The electrodes will eventually deliver small shocks to my STN. How did I get into this mess? Well, I have Parkinson’s disease. If the surgery works, these wires will continually stimulate my brain in an attempt to relieve my symptoms.

    The tremors started in 1999. I remember pouring a glass of wine and my hand starting to shake. “What’s that?” my wife at the time asked. “Parkinson’s,” I joked. We laughed. I was only 43. It seemed funny.

    The shaking went away, but over the next few weeks I started using the computer mouse and eating with my left hand. I didn’t know it, but the Parkinson’s was affecting the fine motor control on my right side. It was subtle, but enough to make me more comfortable as a southpaw. “That’s odd,” I thought. “When did I become left-handed?”

    Parkinson’s causes brain cells in the substantia nigra (Latin for “black stuff”) to die off. This area is where the neurotransmitter dopamine gets manufactured, and without dopamine, the brain’s circuits start misbehaving. When the substantia nigra is 50 to 80 percent gone, you begin to experience Parkinson’s symptoms: usually tremors but also constipation, stiffness, and depression. You slowly lose smooth motion of all kinds, as well as the ability to feel pleasure. It’s a darkness that covers you.

    In 1995, doctors at Mt. Sinai Medical Center in New York conducted the first US surgery to put stimulators directly into the subthalamic nucleus. Henderson started performing the procedure experimentally in 1999, and in 2002 the FDA approved the use of brain stimulators for Parkinson’s. Good health care plans — like the one offered by my employer, Apple — cover the procedure. The cost for mine: about $250,000.

    The heart of the device is a small computer that gets implanted under the collarbone. Electricity flows from this device — the stimulator — through wires running under the skin and the scalp, through the electrodes into the brain, and returns to the computer through the body to close the circuit. The power is always on, so the stimulation is continual. The apparatus is battery- operated, and the battery is not rechargeable. They have to do minor surgery to swap it out every three to five years.

    The surgery normally goes like this: You get one side of your head wired — this takes between three and four hours. Then you wait a week and they do the other side. Wait a week more and get the pacemaker inserted. Wait till the swelling goes down — maybe another couple of weeks — and get it programmed.

    To treat Parkinson’s disease, deep brain stimulation uses a pacemaker the size of a deck of cards implanted under the collarbone to deliver continuous low-voltage shocks down two sets of stiff wires to electrodes near the subthalamic nucleus, a peanut-sized cluster of neurons near the center of the brain. The electrodes can be turned on or off in various combinations to increase or decrease the size of the area being stimulated. The idea is to correct errant impulses that result in the loss of motor control.

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    Things aren’t going as planned. Lying on the table, I’m starting to get very worried. The second electrode still doesn’t sound right.

    Then something wonderful happens. It’s hard to describe, but for more than five years my right hand hasn’t felt the way it should. Suddenly, it’s back. I can tap my fingers, move freely. It’s the miracle cure for Parkinson’s I’ve been reading about! I tell the neurologist.

    The doctors decide to stop the surgery. They staple me shut and cart me down to the CT scanner. This must be a stroke, I think, one of the chief dangers of deep brain stimulator surgery. My last moments will be in this Stanford hospital room, looking at a stain on the ceiling above the GE logo on the scanner.

    But no. After an agonizing 20-minute wait, the anesthesiologist and the nurse return, kindly looks on their faces. Fine. Everything is fine. No bleeding. No problems. It most likely hurt because the local anesthetic wore off, and the surgeon touched the margins of the scalp wound while trying to position the probe. The issues were actually relatively minor, they assure me, and well within the bounds of normal operating procedure.

    Hiccups happen. In this case, the doctors suspect that the brain shifted a millimeter or so. Things weren’t quite where the model said they should be. This can result from either loss of cerebrospinal fluid or simple agitation. It’s why they usually do the two sides of the brain a week apart, with fresh scans each time. They can finish the other side later, they assure me, no problem. Next week, or the week after.

    The second surgery goes about as smoothly as possible. No sooner do I stick out my tongue and tap my fingers a few times, it seems, than it’s done. In record time.

    A month after the second surgery, I’m back at Stanford to program the stimulator. Getting the settings right is midway between an art and a science. On each side of the brain is a probe with four electrodes. The team needs to decide which electrodes to activate with how much voltage. The device is capable of delivering 10.5 volts, but at that power there’s danger of damaging the brain tissue. So we start at 2 volts and won’t go over 3.5.

    Today, eight years since the first signs of Parkinson’s and after months of fiddling, my body is almost free of symptoms. With the stimulator turned off, a Parkinson’s test shows 20 significant impairments. With the stimulator on, it drops to two. Add just a touch of L-dopa and it drops to zero.

    The last wisps of fog have cleared away. My jokes make people laugh again. I can keep up with conversation. I can ride a bike. I can write. It’s been five months since the surgery, but it has finally all come together: It works. I forget that I even have Parkinson’s most of the time. And last November, I went back to work full-time. It’s a miracle. A second chance at life.

    I know it’s not a cure. Parkinson’s is degenerative. Those neurons in the brain keep dying, producing less and less dopamine. How long will I feel normal? No one knows. A long-term study completed in 2004 showed that four years after surgery, patients still typically required 50 percent less L-dopa than they did before.

    After that, we’ll see. The surgery has had FDA approval only since 2002. The long-term effects are simply unknown — I’m the guinea pig. The trick now is to make the most of the time I’ve been given.

....................

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On the Wired website Gulie narrates a montage of images and video about his procedure.

March 7, 2007 at 04:01 PM | Permalink | Comments (4) | TrackBack

Deep-Step Safety Ladder — Give it someone you love

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Lately people in my neighborhood have been dying after sustaining falls at home.

The most recent event caused me stop and consider the catalog page featuring these ladders that I'd previously ignored.

I purchased the 4-step version ($99) and am very glad I did.

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I do have an old wooden stepladder that I store up in the attic along with the crazy aunt.

The only problem with doing that (keeping it up on the second floor of my house — not storing it in the same place as the aunt) is that when I need to change a light bulb or suchlike on the first (ground) floor, I have to go upstairs, get the ladder, carry it down, blah blah blah.

A pain.

I keep the new one in the hall closet right next to the front door, and was delighted to use it for the very first time today to change light bulbs (two of three of which had expired — I think you say "burned out" in your country, am I right?) in the foyer.

It was nifty quick and lickity-split efficient, especially with that thoughtful storage bin (below)

Compartment

at the top for the dead bulbs and their replacements.

From the website:

    Deep-Step Safety Ladder

    Our Deep-Step Safety Ladders are must-haves when cleaning indoors.

    Engineered in Germany, each ladder has a 100-square inch locking platform for solid footing to the very top step.

    Handy 12" x 4" lidded storage box at the top stores tools, hardware, and more.

    • Folds to a mere 4-1/2" wide for storage

    • Extra-deep 5" steps with safety treads

    • Light enough to carry in one hand

    • 330-pound weight capacity

    • Utility hook

    • Safety rail

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Highly recommended for anyone you know, especially older folks who're getting on and tend not to be über-steady when standing on rickety chairs but insist on taking care of stuff around the house nonetheless.

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3, 4, 5 or 8 steps: $89- $199.


March 7, 2007 at 03:01 PM | Permalink | Comments (1) | TrackBack

There are two types of people in the world — and I know how to tell them apart

Lightbulb

One type, when dealing with a three-bulb, difficult-to-access ceiling light fixture containing two burned-out bulbs, replaces the two dead ones.

The second type replaces all three — not just the two dead ones but the one that's working just fine.

Which type am I?

Which type are you?

Which type would you like to be?

I wonder if I should trademark the bookofjoe [Dim] Bulb Personality Test or just let anyone who wants it take it and claim they thought it up.

You know the answer to that one.

That's why I like you — 'cause you're so smart.

March 7, 2007 at 02:01 PM | Permalink | Comments (8) | TrackBack

iGo Standing Treadmill Desk

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Just because iGo didn't envision using its trippy new Standing Mac Computer Desk in the treadmill space doesn't mean you and I can't, what?

From the website:

    iGo Desk

    The minimalist desk for your iMac and Mac Mini with Cinema Display.

    Now you can work and play where you want.

    The iGo Desk is designed to fully integrate with your iMac and Mac mini with Cinema Display, so you don't have to compromise on the aesthetics of your environment.

    Ever ready to swirl and squeeze into any space, it allows you to work according to your moods.

    Even in the dark.

    Be inspired by the May rain next to the window or get uplifted by birds chirping at the balcony as you dream up your next project.

    Or feel proud displaying product slideshows in your showroom.

....................

$499 (scroll down).

[via scifi.com, Born Rich and chipchick]

March 7, 2007 at 01:01 PM | Permalink | Comments (0) | TrackBack

Dreams of a faster Internet connection

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Look at the speeds above, just registered here on my wireless PowerBook G4 running OSX 10.3.9 on Comcast high-speed internet.

What do you think?

Pretty darn fast, is probably what's going through your mind.

And, relative to the speeds most people I know get, it is.

But let me tell you something: I bet I spend at least one hour a day atop my treadmill waiting, waiting, waiting for sites to download and uploads to happen, in the course of creating bookofjoe.

That's one hour I could have for all manner of cool stuff I'd rather be doing than just striding along here on my treadmill, listening to Daft Punk et al.

It must be nice to work at Google or live in Korea where everything happens instantly, what with average speeds of 100,000kbps.

Real soon now, maybe.

March 7, 2007 at 12:01 PM | Permalink | Comments (2) | TrackBack

Laser-Guided Electric Scissors

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No, not the newest cruise missile but a real working pair of AA-battery-operated scissors with a built-in laser to guide your cutting path (above).

The manual version of these scissors (below),

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featured here back on March 10, 2006, generated all sorts of comments, mostly negative and to the effect that this was the stupidest invention since the brief safe*, because the laser beam would move every time you moved the scissors so you'd end up with a totally crooked cut.

No matter.

From the laser-guided scissors website:

    Laser-Guided Electric Scissors

    Cut straight and accurately in no time with just the press of a button — laser-guided scissors are easy to use.

    Light-touch operation makes them ideal for people who suffer from arthritis.

    Use for crafts, wrapping gifts, fabric and more.

    Requires 2 AA batteries (not included).

    8-1/2" x 3-1/2" x 1-1/4".

    Plastic and metal.

....................

$19.98.

*Yes, I am aware that the brief safe may have been invented after rather than before the original hand-powered laser scissors — gimme a break already.

March 7, 2007 at 11:01 AM | Permalink | Comments (1) | TrackBack

bookofjoe visits reddit.com

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Or should I say, reddit visits bookofjoe?

Yesterday evening around 6 p.m. I was standing here, doing 1.0 mph on the old treadmill (the same speed on the same machine as the day before) when I idly wandered over to sitemeter, my statistics/blog traffic et al site.

Lo and behold, a giant spike in traffic starting around 2 p.m. (below)

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and continuing at the time I was looking at it.

Hmmmm.

I noodled around a bit and saw that reddit (top) was the source of the surge.

So I visited reddit to see what I could see and lo and behold, joshwa (6., below)

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had posted to reddit at just after 2 p.m. (when the spike began) yesterday's 12:01 p.m. post featuring Jennifer Thompson's New York Times essay.

I learned long ago, as a third-year medical student, that "when you hear hoofbeats, don't think of zebras."

So all that traffic noise isn't the result of last weekend's total lunar eclipse (below),

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striking as it was, but rather stemmed from the amplifying power of aggregation site reddit.

Always interesting to see what the Web can do when it's in the mood.

March 7, 2007 at 10:01 AM | Permalink | Comments (2) | TrackBack

Deal or No Deal Plug 'N Play TV Game

Goiopipi

What's this?

From websites:

    Deal or No Deal Plug 'N Play TV Game

    Play Deal or No Deal, the hit game show featuring Howie Mandel, right on your TV.

    The lightweight, compact, all-inclusive controller allows play anywhere there is a TV with A/V input jacks.

    All you need is luck, guts and a great sense of timing.

    Requires four AA batteries (not included)

    Features:

    • Plugs directly into your TV — no game console required

    • 5" x 5" x 5"

$16.88.

March 7, 2007 at 09:01 AM | Permalink | Comments (0) | TrackBack

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