New Study on Deep Brain Stimulation finds big improvement and some risk

Here is the essence of a new study on DBS just released:

ScienceDaily (Jan. 6, 2009) — Patients with advanced Parkinson disease (PD) who received deep brain stimulation treatment had more improvement in movement skills and quality of life after six months than patients who received other medical therapy, but also had a higher risk of a serious adverse events, according to a new study. (To read the entire story, look here)

This was brought to my attention by Roberta Greenberg, who is part of a DBS team in Southern California. I want to share a comment from her about the results:

"What a stunning statistic….71% improvement in motor symptoms and QOL for DBS patients vs. 32% for medical therapy patients. Those of us on the DBS side have been trying to tell the medical community this for the past decade, but have had no verifiable, quantifiable data to back up these claims….just our anecdotal observations of our own patient populations. But now….the data has arrived. WooHoo!!

The risk profile in the study is much higher than what I’ve seen. I think that’s probably because the study started in 2002 and surgical techniques were much more crude then. In my experience, the incidence of infection, bleeds, etc has been less than 2%. I think that’s the norm now. We’re so much better at it now than we were back in 2002/2003. The dark ages of DBS. I wish they had chronologically compared complications in the study…but like I said, I’m grateful that they finally got the darn thing published!"

One unmentioned benefit: After the procedure, friends will call you "Cyber Boy".

Music to accompany Parkinson's Disease

(Dedicated to my brother Dave.)

Music can move us in many ways, emotional, physical and spiritual. Even though I am a hardcore skeptic, music moves me closer to God than any metaphysical "proof." The ineffable power of music is parallel to our conception of an all-powerful invisible God. Both are mysteries and both move us to joy, fear, awe and love.

When I hear praise sung by the Blind Boys of Alabama, or hear the anguish of separation from the divine lamented by William Byrd in "Bow Thine Ear Oh Lord" I'm closer to belief than the words of any preacher can bring me. Perhaps that's why some sects ban music. We can't have the choir director showing up the pastor.

Music also makes us shake our booties. Which is the more common reason that religions ban it. But the human urge to boogie to the beat is deep as a funkadelic bass part. And according to "Musicophilia" by neurologist Oliver Sacks, humans are the only creatures known to respond to rhythm by joining in with their own (often unconscious) toe-tapping time keeping. For us, it's as natural as breathing.

Symphonies are even written in "movements." And since movement is the heart of our concern as people with Parkinson's Disease, music is our ally. So here is an assortment of music that makes me move, one way or another. It's dopamine for the soul.

To warm up with something that will make a dead man stomp his feet, Cue up the "Yankee's Revenge" medley by David Bromberg, an ebullient breakneck journey through some well-known fiddle tunes. If Bromberg isn't your cup of tea, try Bothy Band's "Green Groves of Erin/Flowers of Red Hill medly. Then swing into "South Australia" by the Pogues. And as long as our Irish is up, detour over to "Gloria" by Van Morrison If that isn't reet pateet, I just don't know what is.

How do you follow Van Morrison? If you're Barrence Whitfield, you don't ask that question, you just cut loose with "Bip Bop Bip". After which, it's obvious you step aside for Professor Longhair and his spectacular piano playing on "Hey Little Girl". Then change direction, take a journey into a man's soul while Albert King performs "As the Years Go Passing by" It moved Eric Clapton so much he used the melody for the hook riff on "Layla."

Ready for a little fear and trembling? Get a load of Etta James singing "God's Song," written by that unassuming subversive Randy Newman. Hey, trembling is motion!

It might be wise to beat a hasty retreat to Blind boys of Alabama. You can't go wrong with anything on their "Spirit of the Century" album, but for the sheer unexpected brilliance of it, let's go with "Down in the Hole" written by Tom Waits. Then, if you're not afraid to have your heart broken, listen to Linda Thompson's elegant version of Waits' majestic anti-war plaint "Day After Tomorrow." Of course the Waits version is devastating, too. Your call.

Next we reach the still point in the center of a turning wheel where Martin Carthy sings a spell-binding acapella song of the cycle of the seasons called "The January Man."

Then cut loose with Richard Thompson Singing "Hard On Me." The words to this song could easily be about Parkinson's, but it's the unworldly, eloquent guitar solos that really express the rage and frustration of living in a body that refuses to move. His reckless playing lays waste to everything in a way that is frightening as it is cathartic.

Left amidst the chaos that music can describe, we find that it also offers grace. Where? Look to the work of J. S. Bach. In Bach, stateliness combines with surprise, joy with beauty, brilliant craft with exuberant inspiration. My brother credits Bach's music with saving his life as he battled depression. My Dad explained Bach's music this way "He was talking to God." And who can doubt that God listened?

Sign #237 That there is something amiss with health care as we know it:

Parkinson's, a disease that deprives us of dexterity is treated primarily with... teeny, tiny pills.

Upcoming presentation: The next revoluton in therapy

Hello friends, fellow travelers, and those of you who pulled this page up by accident. Our pals The Washington Chapter of American Parkinson Disease Association are following up the well-received talk from Dr. Susie Ro with another promising program: "The next revolution in patient care."

Wednesday, July 9th, 2008 at Providence Hospital Room 2281 U-Tower, Providence Cancer Center Anchorage, Alaska 11am—1.30pm

SPEAKER: Dr Larry Elmer Movement Disorder Specialist Toledo. Ohio

Registration: 11:00 am

Reservations: evedavis@gmail.com or 425-443-8269

Lunch will be provided -

There is no charge. Thanks to Teva Neuroscience for Sponsoring this Event.

Our meeting for this month will be the annual picnic, which Lory has volunteered to host. More on that soon.

Also coming this month Dr. Alec Glass, a movement disorders specialist who will meet with us and share information on gene therapy and PD, and on depression as well. Information on time and location to follow.

I Only Pass Out in the Best Places

I am under strict orders from my son never to do this again. We were dining with family, and I was enjoying a beer and a well-prepared meal in a sunlit restaurant in exotic Kirkland. As conversation wafted around I became distracted by an odd sensation in my stomach, a feeling akin to what you might experience if you swallowed a live and angry badger.

My initial Badger Pacification Strategy (BPS) was denial. Skip this tack should this happen to you. It's useless. As the situation rapidly deteriorated, I adopted BPS #2: Lowering my head to the table in an attempt to control the mounting nausea. You might want to skip BPS #2 as well. No help.

It became clear that I was down to two choices. Release the "badger" in our cozy booth, (BPS #3) or make for the restroom and return the little guy to the wild via the porcelain porthole (BPS #4). Clearly there is no scenario under which #3 could be defined as successful, which left only a desperate attempt at #4.

Thinking quickly I enlisted Pam as my handler, the better to spread the inevitable blame when the doomed mission went grandly awry. I rose decisively to my feet, and then (I'm told) crumpled decisively to the floor (BPS #5)

Miraculously, BPS #5 worked great. At least on the badger. But one doesn't crumple to the floor in the middle of a restaurant discreetly. A hullabaloo followed. People were summoning help via their cell phones before I hit the carpet. When I came to, I looked up into a circle of unfamiliar and concerned faces. They assured me that the paramedics would arrive soon, and hovered close until they arrived.

I was still gathering my wits when the team showed. They lost no time in festooning me with wires connected to machines that read vital signs. I was feeling much better and after explaining about the hazards of rising too quickly when on Parkinson's medications, which can lower blood pressure and cause fainting, I managed to talk them out of taking me to the hospital.

This moment of helplessness paradoxically granted a measure of hope. We are bound to one another by our frailty. Confronted by my small catastrophe, strangers responded with swift compassion.

I wobbled out of the restaurant under my own power but with my family arrayed in close formation around me. As we wound our way to the door, I carried a new intimacy with the anonymous throng returning to their dinners.

The barriers had been breached, and as we left, it was possible to sense a common thought that clearly ran through the minds of many: "Damn, I hope I didn't order whatever HE had!"

My Own Cato

Clouseau moves warily through his silent apartment. His sixth sense tells him danger is poised to explode, and it could come from anywhere. Every narrow hallway, every closet door, any hidden space large enough to conceal a crouching man may contain Cato.


Cato has been commissioned by Clouseau himself to stalk and attack the inspector without warning, and when he least expects it as a form of training. Just as addled as his adversary, Cato lies in wait. But where? Surely not the refrigera...

As the dooor cracks open Cato erupts from inside in a shower of frost and fury! He rains blows on the hapless detective with icy hands. Havoc, treachery and mayhem ensue, which both men seem, perversely, to enjoy.

CUT TO...

Pete wanders obliviously through his house. Every doorknob, every corner on a counter top holds the potential for sharp and unexpected pain as his body responds to signals from his brain that cause exaggerated dance-like movements in his limbs. The complex and unconscious calibrations that we all make in the banal act of passing through space are thrown off in the interplay between disease and medication.

But when the meds kick in, it's easy to forget that. Why? Because, darn it, it feels so great to move! Until an arm swings wide and slams into something hard or sharp. Then it feels great to spout profanity with your amplifier up to 11.

It's painful and exasperating to suffer one's own unintended violence. But let's face it, it's also funny. To have Parkinson's Disease is to live a life of improv slapstick. Congratulations, you've landed both leading roles, You're Cato and Clouseau.

The best advice you'll ever ignore

If you could ask a smart, well-trained Parkinson's Disease specialist one question, What would it be? I was in a position to do that recently thanks to my friend Dr. Mary DeMers, who arranged for Pam and me to attend a talk from Dr. Stewart Isaacson, Director of a movement disorders clinic in Boca Raton. Dr. Isaacson was in town to educate the local medical community about developments in Parkinson's care.

As the designated Parkie, I wondered how to get the most bang for my question buck. I wanted something simple and powerful that I could take back to my support group. So I asked something along the lines of: "What is the one thing that your patients could do to cope better with PD that they don't do?"

Without hesitation, the doctor shot back an answer. I expected a reply that might have something to do with managing our pills, or informing ourselves about our disease. Nope. His reply was one word.

What he said was...

(Are you ready?)

What he said was....

(Got a pencil? you may want to write this down!)

What he said was...

(and I quote)

What he said was...

(WARNING: You're not going to like this.)

What he said was....

(OK, here it is.)

What he said was: "Exercise."

Handy Doctor's Guide of Stupid Things to Avoid Saying

Don't get me wrong, I trust and like my doctor. Otherwise I would find somebody else. But there is an appalling number of stupid and cruel remarks related to me over the past few years that fellow patients have heard from their doctors. These patients and their loved ones are often bitter about these thoughtless wounds, and as you read some of the remarks below, you will understand. (Note, these are paraphrased from the original sources.)

The reassuring physician, answering a patient's question about whether he would adjust to a new medication: 'You will be dead before your body gets used to it.'


The reassuring physician II: 'You have Parkinson's, but at your age something else will pick you off before it becomes a major problem.'


The careful observer: 'Come back next month, you are no worse than the last time I saw you.' In actuality the person in question was so much worse he was nearly immobile.


The blithe optimist: 'Let's give this new medication a try, there will be no side effects.' The patient suffered more from the new meds than from his Parkinson's Disease.

The cheery prophet, on being informed about a patient's positive mood and symptomatic improvement following exercise: 'That'll disappear in a few years.'

The gimlet-eyed skeptic: 'That's not a real tremor, you are making your leg do that.'

Others have told me of being given their diagnosis through a burst of laughter, of being given the shove test by several doctors without a word of explanation, and of being locked up by a crew at an emergency room, accused of taking drugs, and told that they were going to remain locked up until they were ready to tell what they had taken.

I am grateful for the hard work of smart, dedicated people who have mastered the techniques and knowledge that keep me functioning at the level that I maintain. I appreciate the difficulty of a general neurologist who must treat everything from migraines to MS. And I can imagine the chronic frustration that must come from being forced to manage the decline of people you wish you could cure. Throw in the many failings of the health care system as we know it here in the U.S. and I can see why both of my parents, one a surgeon and the other an anesthesiologist, discouraged their children from a career in medicine.

I grant all that. But it will take someone smarter than me to understand why people who are enduring what can't be changed should be subjected to additional pain that can be easily avoided.

R.I.P: The Ogre Who Says "No."

Who was the Ogre Who Says "No."? Well, for quite a while, he posed as me. This ogre alter ego crept into my character with patient stealth. The Ogre Who Says "No" set up shop in my head masquerading as the voice of reason. When someone had to play the heavy, the adult voice of delayed gratification, the Ogre was resigned but resolute, and stepped in.

He could be counted on to point out why we should stay home instead of going out, why we didn't need pets, or why we weren't saving enough. The Ogre phrasebook was full of lines like "Sure, but..." and "Do we really..." The Ogre was fluent in several languages because he only had to master one word. Nein, nyet, non, no.

The ogre was no dummy, and often had a point. The truth is that there are always good reasons to say no to just about anything. And that definitely includes saying "no" to the Ogre, who was a pain in the ass to live with. The Ogre had no joie de vivre, and without joie, vivre is thin gruel.

Can I blame Parkinson's for the coming of the Ogre? Probably not entirely. But the Ogre was not me. My Dad even noticed and was disturbed enough to contact my sibs asking if they had noticed that I had lost my "Ebullience." And given that the Ogre keeled over and died around the same time I got up to snuff on my Parkinson's medications, it's hard not to associate the two.

We buried the Ogre in a simple pine box. We never leave flowers. He wouldn't approve. But we do visit his grave now and again to honor him, and to reflect on his last words, carved on the cold granite of his headstone: "Carpe Diem".

Parkinson's symptoms: What to watch for

Illustration by Peter Dunlap-Shohl, click to enlarge.

Tell Your Story

One of the maxims of the news biz is that everyone has at least one great story to tell.

Here's your chance, courtesy of the American Parkinson's Disease Association:

New APDA Young Parkinson’s Web Site

Submit Your Story
Could you be one of our new “Faces of Experience?” Have you been able to: effectively manage your symptoms, develop a particularly strong support system, participate in a clinical trial, become an advocate…? How did you do it? If you were diagnosed with PD at a young age, you and your family may be able to help others adjust to certain aspects of living with the disease by sharing your unique experience with them.
Stories received may be featured on www.youngparkinsons.org or in other APDA publications. Please submit all stories with the subject line “Story Submission” and email to: info@youngparkinsons.org

You can do more than you think you can

ABOVE: Homage to Sylvain Chomet

Alzheimer's is the forgetting disease, but there is something that Parkinson's keeps making me lose track of: The fact that I don't have to quit doing what I enjoy because of PD. It's true that lots of my old skills don't measure up to their former levels, But as G.K Chesterton said, "Anything worth doing is worth doing badly." This was a defense of amateurism, but by all that is shaky, it also applies to living with PD.

I love riding my bike, I used to do a regular 22 mile round trip commute on our wonderful network of Anchorage bike trails. When I was diagnosed with Parkinson's,I was especially glum about the prospect of losing my ability to balance. No balance, no bike. I kept at it for awhile, then had to sit out most of a rainy season. When the next season rolled around I talked myself into the idea that I couldn't ride anymore.

I was working at home one day a little while after I reached this dispiriting conclusion. My son had driven to school and Pam had taken the Jeep to work. The phone rang, and when I picked up, I was told by the head of security at my son's high school that we had "A Situation" with his car. She explained that a roving security guard had peered into our Subaru and spotted a weapon. Said guard had the car staked out and could not leave until I dealt with the situation.

Calling me to let the guard return to "roving" mode was actually plan "B". The original idea was to jerk my son out of the middle of his AP economics test and have him retrieve the forbidden implement of destruction. Sanity prevailed, in the form of an alert assistant principal who knew that this kid would not be a threat to the school if he had a bazooka in the car. (Come to think of it, the car itself was a bigger threat, but he can explain that to you himself here)

Which was how I ended up telling an extremely unhappy head of security that, having no car, I would walk right up and take care of things, but since I had Parkinson's Disease, it would be about 45 minutes. This naturally left her delirious with happiness. At least I think it was happiness.

I trudged into the gloom of the garage to put on my shoes and the dull gleam of the gold paint on a friend's road bike caught my eye. It seemed worth a shot. It was.

I rode uphill all the way to the school and confiscated the weapon. I know you've been wondering just what it was. Machete? Switchblade? Gravity knife? Nope. It was a tiny folding saw with a 6-inch blade and a bright yellow handle that my dad had given us in case we broke down in the middle of a forest and had to hack it down to get back to civilization, or, if we were feeling truly ambitious, use it to start a whole new civilization. Which seems like a better idea all the time.

My job done, I signed a few autographs kissed a few babies, rescued a treed cat and rode home, delirious with happiness. I was back on a bike.

Urgent bladder holding on line one

OK, who wants to talk about incontinence? Me neither. Let's come up with a nice, non-threatening euphemism. Doctors often have a strangely poetic way with words,cue the doctor! And the doctor says... "Urgent bladder".

That's much better. It sounds like you're on a dangerous and important mission. Or at least, your bladder is. Unfortunately, this selfish little organ is not the type to stand up well under duress, and when the going gets tough, the bladder gets going.

Several ways of dealing with this little bully come to mind:

1.) Not drinking Advantages: Nothing in, nothing out. Disadvantages: Dry mouth, dehydration, premature death
2.) Adult diapers Advantages: Relive your childhood. Disadvantages: Humiliation, self-loathing, reliving your childhood.

Great. What we really need here is another option. Fortunately I just happen to have one. Voila!

3.) Kegels

Those of you who were paying attention in childbirth class might remember these. Kegels are taught to expectant mothers to strengthen muscles that are stretched during delivery. While flipping through a promotional pamphlet from On Health, I noticed that they recommend this exercise for both Women and men to control urinary problems. Those of you who paid attention in childbirth class can stop reading now. For the rest of you...

Here is how to Kegel, adapted from wikiHow

Locate pelvic muscles. You can do this by stopping the flow of urine when you are going to the bathroom. Then start it again. These are your pelvic muscles. Do this only to find the muscles. It's not healthy to stop and start urinating.

Tighten and relax these muscles daily. Try and work up to 100-200 times a day. Or choose a certain thing to associate with them - for instance, kegel at every red light you come to, or every time you open the fridge.

* Get into a comfortable position. You can do these exercises sitting in a chair or lying on the floor. Relax buttock and tummy.
* Imagine you are trying to hold back urine; lift and squeeze from the inside. Try and hold that action for the count of three.
* Imagine that you are trying to stop yourself from passing wind; lift and squeeze your anus and hold for a count of three.
* Combine those two movements into one fluid movement. Starting from the front, lift and squeeze, don't let go, follow through to your anus, lift and squeeze. Relax. Hold this position for 10 seconds.
* Rest for 10 - 20 seconds and repeat.
* Work towards 12 strong holds and as it starts to become easier, try holding for longer, and repeat as many times as you can.

Next post: Aerobic Kegeling!

Anybody seen my comfort zone? (part two)

Shortly after my initial diagnosis I got a visit from an old friend. A person of warmth and intelligence, he is someone whose judgment I trust. He predicted a fruitful, if difficult time, based on experience with others who had faced severe illness. I appreciated the comfort offered, but deep down, and for that matter, from right below the surface, I filed this under "Yeah, right."

Six years down the road my friend is looking damn clairvoyant. Since my diagnosis, I have been surfing my strongest creative roll, period.

But first, I had to slam into a wall. Discomfort in a literal sense began to hedge me in. Repetitive strain problems that I have no doubt were Parkinson's driven arrived at the point where my resourceful and bright ergonomics doctor ran out of ideas that would keep me drawing.,

This was a double blow, first because drawing has been a large part of my self identity since I was a second-grader. And second, it has been my living for 25 years. I wasn't ready to give it up to PD.

I had one last reed to grasp. At work we are badgered to sit in an ergonomically correct way- something that I slid by as the rare bird who didn't sit at a keyboard. I knew that there were electronic drawing pads that would enable me to approximate this platonic ideal of posture while drawing. Using the pad, I can keep my elbows in a natural comfortable angle while holding my head level to look a computer screen, where drawings unfold in a way that is magical.

When I pitched this idea to my doctor, a look of relief crossed his face. He smiled, and replied that the idea would work. And so far, it does.

Drawing while watching the screen instead of your hands is no big trick. When you take classes, you are taught to draw while looking elsewhere. Mastering the program that allows you to draw on the screen (I use Photoshop) was a different story. But that is where I really got lucky. My wife is not only a Photoshop ace, she is also a patient teacher.

Whenever I got stuck, bewildered, frustrated or exhausted, Pam would sort things out. Eventually I arrived at my goal of being able to produce work on the computer that was indistinguishable from my pre-computer cartoons.

When I arrived at that lofty peak, that dearly bought goal, that ultimate moment when I finally was able to reproduce the old style, I was rewarded with a moment of clarity. I realized that recreating my old look was was a stupid idea.

Take a two thousand dollar machine, equip it with some of the most sophisticated software available, and turn it into a fifty cent pen. Brilliant, wouldn't you agree?

Since then I have been on a full-scale creative bender, exploiting the color, texture and effects that the computer makes possible. In the past year I have even been able to add in sound and motion, thanks to the animation program, flash. To see for yourself, take a look at the animation posted below.

The world is accelerating while my body is braking. But at least my drawings can move.