Handbook for recovering cretins

You may think that it would be difficult to find a way to make a simple diagnosis of Parkinson's Disease more devastating. But as we learned in the Handy Doctor's Guide of Dumb Things to Avoid Saying, a surprising number of doctors will take on that challenge.

The earlier post linked to above was fine as far as it went. But it didn't go as far as it should have. In an attempt to be more constructive, here are some thoughts about what can help both doctor and patient when it comes to the rough job of passing on a diagnosis of Parkinson's Disease.

Let me put on my PD Pollyana hat and propose that even the cretinous behavior exhibited in remarks like 'You have Parkinson's, but at your age, something else will kill you first' merely means that these people have nowhere to go but up. And we know that they're trainable. The ability to learn is what gets them through medical school. That and massive student loans.

So what are they supposed to say?.Put yourself in their place and you say... what? Hard as I try, I cannot come up with a way to tell someone that they have Parkinson's Disease that is going to make their day brighter and more minty-fresh.

Allow me to demonstrate. How about this? "Congratulations! You've got Parkinson's! WOO-HOOOOO!!!" I don't think so.

Let's try another tack. Misery loves company, so what about this? "Exciting news! You have something in common with Michel J. Fox, and Janet Reno!"

Right.

See? It's not so easy.

But let's also remember that for the diagnosed, it's likely some of the worst news they'll ever get. So here are some suggestions from Monsieur Pierre's Finishing School for Recovering Cretins. This is not an exhaustive list, if you have a point that I overlooked, please post a comment.


1. Offer credible hope

How do you do that? Let's step into the examining room and look at some examples:

WRONG: "Son, you're FUBAR."
RIGHT: "I'm afraid I must tell you you have Parkinson's Disease. Only a short time ago, this would have meant a drastically shorter life span and rapidly diminishing quality of life. But over the past decades new medicines and surgical techniques have emerged that can manage this disease with excellent results for quite some time. And there is more coming, both in new meds and even physical therapy techniques. With new imaging technology, we're learning more about the brain all the time. And the noble cause of stopping PD has never had a higher profile."


2. Emphasize that they are not helpless, and that behavior can affect the course of their symptoms

Let's take another peek in the examining room...

As our doctor pauses to catch breath after delivering the speech above, the stricken patient interjects "How long before I'm... I'm... a pitiful shell of my once vital self?"
WRONG: shrugs shoulders, stands mute with quizzical look.
RIGHT: It's impossible to say. Everyone's case of PD is different. Much depends on you. If you exercise, eat right and work to manage your disease you can go for a good long time."


3: Have additional information on hand
Most people have little state-of-the art knowledge about PD. Ignorance begets fear, fear begets helplessness. All the major PD organizations have pamphlets, booklets and videos on every aspect of PD they will send for free. It's a good idea to have this stuff on hand, or a least to give people a clue about where to find it. There are a number of informative Web Sites, like the American Parkinson's Disease Association or the
Parkinson's Disease Foundation. The Northwest Parkinson's Disease Foundation has a nice weekly update that anyone with a computer and an internet connection can subscribe to here.

4. Support your local support group

Support groups are full of people who are Parkinson's experts in a way you can only be if you wake up with the disease yourself every day of your life. Good groups share expertise and build morale like nothing else. It can be daunting to walk into a room full of people that are living your frightening future. But it can be even more powerful and inspiring to see people who have been afflicted for years or decades who cope with courage and grace.


5. One last no-no

A friend told me her doctor realized she had Parkinson's but withheld the diagnosis, reasoning that it was early in its course,and there was nothing she could do about it at that point. Surely there is no need for me to spell out what is wrong with this!

So that's the program. Not that hard, wouldn't you agree? It certainly isn't asking too much. Many people want their doctors to be gods. As much as we wish it, that's impossible. However, even as a mere human, you do have a choice. You can be a healer, or just a heel. Much of the difference hangs on small and uncomplicated acts.

Shivering Penguins! This blog is a year old!

"Troubles Overcome are Good to Tell" -
Italian Proverb, from the writing of Primo Levi

Yikes, this blog is now just over a year old! The first post went up January 19, 2008. In the following time we've looked at everything from the Greatest Parkinson's Love Story Ever Told, to some of the dumbest things doctors say, when delivering a diagnosis of Parkinson's Disease.

Since I installed a hit counter about two weeks into the project, "Off and On" had a total of 2,695 visits (only half of which were me checking for comments) from 66 countries and territories all around the World. There have been visits from every continent but Antarctica, where the penguins are all in denial "Tremor? Nah, I'm just shivering, you idiot."

Here is a sample of visits from unexpected locales tallied for the year by my hit counter: Israel (8 visits), Malaysia (7 visits), Singapore (7 visits), Turkey (6 visits), China (4 visits), and let's not forget Iran, Bangladesh, Belarus and Jamaica, with one visit each.

Wow. Parkinson's Disease: Bringing the world together.

I hope, dear reader, that this has been valuable to you. It has certainly helped me to cope. Writing is a sort of deliberate thinking. It is a focused exploration which simultaneously creates ideas and reveals them. When I try to explain my thoughts and feelings to you, I come to understand them better myself. Or at least, it feels that way.

Just as important, your comments and even your silent visits, (which are currently running between 5-15 a day) tell me that there is solidarity and understanding out there that reaches around the Globe. That is heartening. I'm sorry that you who read this were dragged into the struggle, but it is good to know we do not struggle alone

What does the future hold? Dangerous question, but I can go at least this far: More trouble and more telling. Because not only are troubles overcome good to tell, telling is part of the overcoming.

Flash Molasses #7

CLICK ON IMAGE TO ENLARGE

Meeting the 17th

Sorry for the late post, I was out of town having my head examined. We will meet Saturday according to the ancient and immutable practices of our order, the Most High Anchorage Parkinson's Disease Support Group. 1:00 The Anchorage Senior Center. 1300 E. 19th St.

See you then,

Peter

Grand Elk of the Order of the Sequined Scepter, Knight of the Substantia Nigra, Servant of the Sub-Thalmic Nucleus, jr.

He knew whereof he spoke

A vignette. Flashback six years. After avoiding going to a support group for months after my initial diagnosis, I have been lured to a meeting to see a speaker. I walk in and find a seat next to the very thing that has been keeping me away: A scary old guy with an advanced case of PD. The SOGWAPD, on learning that I too had Parkinson's, slowly leaned my way and said

"Dntwatugtspeechthroy"

To which I could only reply "what?"

He patiently leaned my way again and repeated

"Dntwaytugtspchthrpi."

To which I had to repeat "what?'"

At this his wife intervened and translated

"He said 'Don't wait to get speech therapy' "

I didn't

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".

Build your Parkinson' Word Power, Second in a series

Parkinson's Disease has a fiendish knack for coming up with ironic ways to torment those of us it afflicts. For instance, the disease brings with it an exciting array of new and intriguing words. But at the same time it deprives patients of their ability to speak. What's the point of learning a two-dollar word like "dyskinesia" if you don't get to drop it into a conversation? Unfair! Especially when we're so adept at dropping other things.

(Aside: A month or so ago, while bagging frozen dog-doo in the back yard I almost dropped droppings, which would have made them "redroppings" but that's another story.)

There's no time to lose! We need to use these words early and often. Words like "bradykinesia", which is the term for the slowness which characterizes the movement of everyday persons with PD. It is derived from the Greek word kinētikos, "one who puts in motion” combined with "brady", which means slow. And that's the way we all became the Bradykinesia Bunch.

How about the aforementioned "dyskinesia"? This is the term that applies to the snake-like dance movements that we perform involuntarily when we overreact to Sinemit. On a good Sinemit buzz I often look like a deputy from Monty Python's Ministry of Silly Walks. Which if it were named by the same people who come up with terms to describe PD-related matters would be the "Ministry of Jocular Gait-Disturbance."

"Sinemit?" What's that? It is the trade name for the most effective medication for PD, levedopa combined with carbidopa. Levedopa is transformed to dopamine by the brain, which helps compensate for the inability of PD patients to make adequate amounts of the critical neurotransmitter themselves.

Unfortunately, the body cannot take in straight levedopa in the quantity that is needed to help control symptoms. Ingesting the required amount straight makes people sick, and they end up sending it back from their stomachs the way it came in.

The solution is to combine the levedopa with carbidopa which keeps the body from reacting so violently, so we don't emit our pills. The word was coined by abbreviating the Latin "sine" which means "without" to "sin" and adding the word "emit" which in this context means to vomit. So when you you ask your pharmacist for Sinemit, you're requesting a batch of "No Vomit". A small price to pay to avoid a sin of emission.

We'll dissect more Parkinson's words on our next edition of Build your Parkinson's word power. Stay tuned and talk loudly.

Note: the first in this series can be found here.

Why I'm looking forward to 2009: Good news for Alaskans with Parkinson's Disease

Hold me back!

It's all I can do to restrain myself from from typing the following news in all capital letters, followed by multiple exclamation points. Why am I so jazzed? Because it looks like we are getting very close to what I thought was an impossible dream. We hope to bring up a Parkinson's Disease specialist to see patients here in Anchorage on a quarterly basis.

His name is Dr. Alec Glass. Dr.Glass works as a Parkinson's specialist at University of California San Francisco, I will post a look at his training at the bottom of this update.

How close are we?
Here is an excerpt from an email he recently sent.

"I have submitted my application for an AK license which should be processed in early 2009—hopefully!... I am excited to kick this off and hope that we can improve PD care for patients up there."

This is a terrific opportunity for Alaskans to see a first-rate, well-trained and personable neurologist without the hassle and expense of traveling thousands of miles to find expert care. Which brings up the following concern: Dr. Glass will need enough patients to make this worth the effort and cost. This is where you come in. How do you make an appointment? Dr. Frank Ellenson is the local neurologist who will be hosting Dr. Glass. So, any of you who could benefit from this please arrange a visit through Dr. Ellenson's office. You will likely need a referral from your current provider.

A big thank-you to all involved in getting us to this point. I especially need to single out our visiting support group member Joanne Power, who got this ball rolling.

In conclusion,just let me add WOOOOO-HOOOOOOOO!!!!!!!!!!

Here is the contact info:

Alaska Neurology Center. 3851 Piper Street Suite T345. Anchorage AK 99508. 1-866-977-2562 Phone/Fax.
Alaska Neurology Center can be contacted through their web site.

Here is more information on Dr. Glass.

Current Position

September 2006- present Assistant Clinical Professor of Neurology


Education

1993-1997 Trinity University, San Antonio B.A. Cum Laude,Psychology

1997-2001 University of Texas, San Antonio M.D.

2001-2002 Tufts-SEMC, Boston Intern Internal Medicine

2002-2005 Tufts-NEMC, Boston Resident Neurology

2005-2006 Mayo Clinic, Rochester Fellow Movement Disorders

Certification & Licensure

2005. Medical Licensure, Minnesota
2006. Medical Licensure, California
2007. ABPN Board Certification, Neurology



Honors and Awards

2004 AAN travel award for outstanding resident teacher.

1997 Cum Laude with Departmental Honors

Scientific Society Roles and Memberships

Memberships:

2001-present American Medical Association

2001-present American Academy of Neurology

2005-present International Movement Disorders Society

2007-present American Academy of Sleep Medicine

Service to Professional Organizations:

2005-present Member, Ethics committee, American Academy of Neurology

Keywords/Areas of Interest:

Parkinson’s Disease, Movement Disorders, Dystonia, Botulinum Toxin, Tremor, Deep Brain Stimulation, Electrophysiology of Movement Disorders

Professional Activities

Clinical Care, Movement Disorders: I see patients with various movement disorders including Parkinson’s disease, dystonia, myoclonus, tremor and more unusual movement disorders 4 half-days per week. . Additionally I spend 3 half days per month in the Botulinum Toxin lab in which Botulinum therapy is administered for dystonia, spasticity, and sialorrhea. One day per week is spent seeing patients with various sleep disorders in the UCSF Sleep Disorders Clinic at Mount Zion. One day per month is spent in the clinical Movement Disorders electrophysiology laboratory in which surface and needle EMG are used in conjunction with various other modalities in the evaluation of various complex movement disorders (myoclunus, non-routine tremors) Finally, I assist in the care of patients treated surgically for Parkinson’s disease, dystonia and tremor.

Pete's People with Parkinson's Portraits No. 7, James Doohan

Yes, the man who played Scotty on Star Trek, James Doohan had PD, among other things. Apparently, Dr. McCoy's tricorder, while promising in early trials proved ineffective for treating Parkinson's Disease. The quest goes on.

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?