Shocked

Several weeks ago, I read an article in the Huffington Post by Dr. Mark Goulston.¹ Dr. Goulston described his work in 1986 with a suicidal, late-stage Parkinson’s patient who stepped back off the ledge after receiving electroconvulsive therapy (ECT).

Because I have Parkinson’s disease, I read this post with particular interest. Near the end of the article, my interest turned to shock. Dr. Goulston noted, almost as an aside, that with ECT, not only did the patient’s depression lift—his motor functioning improved as well.

I was diagnosed in 1997. Since then, I have become a Parkinson’s news and information addict. Yet never before had I heard that ECT might be effective in treating motor symptoms of Parkinson’s. How could I have missed this?

I dove into the Internet and discovered that over the last 50 years or so, psychiatrists reported cases in which ECT helped Parkinson’s sufferers not only with depression, but also with motor symptoms. Some of these psychiatrists called for controlled studies to learn more about the effects of ECT on PD, what risks ECT would pose, and what conditions and practices would maximize ECT’s benefits and minimize risks.

Where, then, were the controlled studies?

Hunting for research on ECT, I discovered there is shockingly little to be found. In 2003, authors of a review of articles on ECT and PD (1990-2000)² concluded:

“ Overall, a substantial amount of data support the positive effects of ECT on the motor symptoms of Parkinson’s disease. However, almost all of these data are from case reports or cases series, with only one randomized controlled trial in the literature. This, together with concerns over side effects, may raise doubts among neurologists. Further research in collaboration with neurological colleagues should be encouraged to address these concerns, as ECT may be a viable option that is acceptable to many patients.” [emphasis mine]

Authors of a meta-analysis of the literature (1980-2005)³ on ECT stated:

“…ECT can produce statistically significant effects on motor function in PD….. For ECT, although there was a relatively large and significant effect size, we considered the low number of studies to be a limiting factor, and therefore avoid any definite conclusions about this method of brain stimulation in PD.”

So 20-plus years after Dr. Goulston’s patient picked up his life again, PD patients are not equipped to weigh the risks and benefits of ECT. In fact, neurologists aren’t even talking about it. The research is insufficient. Why is that? Because not enough studies have been done to make anyone want to do further studies. The evidence on ECT is largely anecdotal and that simply isn’t enough.

It’s a perfect circle, a Catch-22. And it leaves patients with only one option when, inevitably, medications fail and symptoms worsen – DBS surgery, which involves drilling holes in the skull, pushing wires through the brain, and depending on batteries to keep a constant current pulsing through wires inserted under the skin. If it comes to the point that I need that, I’ll do it. But why has this procedure been deemed worthy of risk, worthy of study, worthy of being paid for by Medicare, while ECT, simpler, noninvasive, and far less expensive, has been shunted aside?

Two weeks’ worth of reading has not turned me into an expert on ECT. But what I learned convinces me that there is a very good chance that ECT offers another choice, an additional station along the way where patients can stave off, for a little while longer, the ravages of this disease.

Only research will tell us if this choice pans out.

This research is long overdue.

References

1. Goulston, M. Living through wanting to die. The Huffington Post, July 9, 2009. http://www.huffingtonpost.com/mark-goulston-md/living-through-wanting-to_b_228811.html

2. Kennedy R, Mittal D, and O’Jile J. Electroconvulsive therapy in movement disorders: an update. J Neuropsychiatry Clin Newurosci 2003; 15:407-421.

3. Fregni F, Simon DK, Wu A, and Pascal-Leone A. Non-invasive brain stimulation for Parkinson’s disease: a systematic review and meta-analysis of the literature. J Neural Neurosurg Psychiatry 2005; 76:1614-1623.

photo by Philip Schexnayder on flickr.com

A Valentine's Day Tribute to Rayilyn Lee Brown

Shown above with her faithful sidekick Spike, Ray is a familiar presence to members of the Parkinsns listserve. With her research partner Diane Wyshak, Ray keeps the list informed of developments affecting the Parkinson’s community. Ray is a director of the Arizona Chapter of the National Parkinson Foundation.

Ray’s kindness and encouragement help get us through; her candor makes us think; her sense of humor makes us laugh; her sense of outrage gives us energy; and her tireless advocacy gives us hope. Thanks, Ray.

10 things you should know about Ray

1. Ray was named for her dad.
Here’s how she tells it: “My Dad’s name was Ray. When I was born my Aunt Lois was in high school writing Carolyn, Marilyn, Rayilyn!! My parents liked it but it has given me nothing but trouble trying to explain it. I’ve been called Raylyn, Raylon, Raylene, Rayiteen and my brother called me Rayloon. Going by Ray is easier and that started when I was teaching and a colleague called me Ray.”

2. Ray was once a shrinking violet.
In her words: “I was very shy as a young person. As a graduate student I used to get headaches in seminars because I wanted to say something but was afraid.”

3. Ray is a retired high school history teacher and a lifelong history buff.
When she was in third grade, Ray discovered a book about the ancient Greeks. The rest is history. Here’s Ray on her life in teaching: “My 30’s and 40’s were the best times of my teaching career. It was truly Camelot-magic. Students of all races and creeds arguing the various interpretations of history made for exciting, outrageous classes. My students not only became successful professionally, but personally are great people. Some are still in contact with me. One does Parkinson’s research at the U of Pittsburg.”

4. Ray has plenty of practice fighting nasty diseases.
Ray navigated abdominal surgery in her 30s and ovarian cancer in her 40s.

5. Pre-PD, Ray was a woman of unusual neuromuscular prowess.
Ray liked to dance, play golf, bowl, decorate, paint, garden, travel, and play the piano. She cruised the high seas and had many high adventures. And she typed 100 wpm.

6. Ray was born and bred a Republican.
Here’s what Ray has to say about her political conversion: “The biggest event of my last act has been becoming a Democrat after being a born, lifelong Republican from an active political family. Most people, I understand, become more conservative as they age. However, I don’t think any of my positions have changed (the GOP left me) except for ‘war.’ Teaching about its causes for so many years has turned me into an old ‘peacenik.’”

7. Ray is a philosopher.
She says: “I was a philosophy minor in college and tried to develop a philosophy of life that accounted for how life treated everyone, not just a few healthy people. So when I was young I volunteered to work in a spinal cord injury ward in Long Beach CA. My stint didn’t last long because I couldn’t handle it. Years and diseases later, I’ve toughened up and really hope that I can somehow use my ability to write to help other people who are also imprisoned. It is all I can do.”

8. Ray loves her work.
Describing her work as an activist, Ray says: “I am absolutely fearless. I like to argue and write and I care about other people. I want to find solutions. I want to have goals.”

9. Ray had DBS surgery.
Diagnosed with PD in 1996, Ray had DBS 7 years later. She describes her path:
“The diagnosis didn’t affect me too much at first, as symptoms were mild —I had survived ovarian cancer 16 years before—but as I have gotten worse my life has changed drastically. When my tremors went bilateral, I opted for DBS and it really worked for that symptom. Advice: find the best surgeon and medical team you can.”

10. Ray is teamed with a canine of remarkable powers.
About her life with him, she says: “I have always loved animals. Had a couple of cute schnauzers; now have Super-Spike, a mixed breed, the best dog of all. He is my caregiver/companion in the last act of my life, but he can’t help me physically. He is getting old and I fell recently helping him up on the bed. He has since learned to use a footstool.”

Hello, readers: I am in the process of revamping this blog: posting more often and making posts shorter, more diary-like, and, I hope, more inviting of comments.

I'm also shifting to a new address: http://parkinsons.tumblr.com

For a while, I will post in both places.

MJF on Frontline: Say What?

I admire, appreciate, and cherish Michael J. Fox, but when he says (on the Frontline program) that he wouldn't go back to where he was before Parkinson's, each and every dopamine-producing cell in my brain, all three of them, scream in protest. If I had that choice, I'd jettison every scrap of silver lining: the wisdom I've accumulated, the courage I've mustered, the empathy I've developed, the knowledge I've acquired, the friends I've made. To get rid of this disease? I'd do it in an instant. I wouldn't think twice.

Gifts of the Season

Hello all,

It's been a while since I posted. It's good to be back on this space. Most of the fall I was caught up in election fever: glued to CNN, poring over print and online media, holding my breath as states' projected outcomes switched back and forth between blue and red. What an election. Who would have dreamed this country could engage in this process with such seriousness, intensity, and commitment...that my kids (in their 20s) and their peers would do a 180° turn from their position of disaffection, cynicism, and apathy...that I and my fellow baby boomers would see such a resounding repudiation of the racism that permeated the United States into which we were born.

It was a shining moment.

Now, as we get ready for the hard work and the big unknowns ahead of us, we find ourselves again in the shiny season, considerably toned down this year. Many of us are struggling, many of us are insecure. Yet in the season of giving, give we will, whatever we can. If you give to someone with Parkinson's—or if you have Parkinson's and need some items to put on your wish list—here are some things I have enjoyed that you might, too. And they are all available on the internet. Fa la la!

The Electrolux Pronto 2 in 1 Stick Vacuum

Seriously folks, what says love better than a vacuum cleaner? This featherlight, self charging, no-cord-to-trip-on, easily emptied, handy-dandy little sucker will make you want to tidy up the floor endlessly. It’s plenty powerful…won’t pick up a tennis ball but it works just fine for basic household schmutz, and it won’t endanger your toes or the cat’s tail.

Housed on the stick vacuum is a handheld vacuum that you can detach to clean up your car, your furniture, etc. Hence the “2 in 1” designation. Way practical, way cool.

I've had mine for over a year and I use it every single day. The fun never ends.

The 2 in 1 comes in festive candy red, and it's pretty spiffy. Add a bow and watch faces light up at the sight of this baby.

At Amazon.com, $83.48.

Cosco's 2-Step Folding Ladder

Admittedly, we people with Parkinson’s should be wary of ladders, but every so often, darn it all, I need something that is stashed way up high and I don’t want to wait for my tall spouse to get it for me. When that happens, I slide my Cosco stepladder out of its little space between a kitchen cabinet and a wall, unfold it, and confidently (though carefully) make my way up two broad and sturdy steps, secure in the knowledge that they will support me well and firmly. Then I grab the ice bucket, or the vase, or whatever, and savor another small triumph as I proceed, unscathed.

In ever-popular white with black steps, this item dresses up nicely.

At Office Depot, $26.59.


Buster Keaton’s Silent Comedies

Laughter is great medicine, and who better to make us laugh than Buster Keaton? Better than anyone before or since, Keaton understood the comic possibilities of a world in which inanimate objects are out to get you. Sound familiar?

For us people with Parkinson’s, Keaton resonates: his stoic demeanor, his persistence and hopefulness, his flashes of brilliance and grace. He also makes audiences fall over laughing, so make sure you are seated with your safety belt securely fastened.

If you are new to Keaton and you want to try him out, you could go for one of the great full-length features: The General, Our Hospitality, Steamboat Bill Jr., The Navigator. But I swear you won’t be sorry if you go for the big boxed set. Once you develop a taste for Keaton, which will happen within five minutes, you’ll want to see them all.

The films of Buster Keaton are available from a company called Kino.

Uproarious Reads Department: David Sedaris

There are some pretty funny books out there, too. In the personal essay category, I vote for David Sedaris as the writer most likely to induce cardiac arrest from hyper-laughing, and I am partial to his recent collection, When You Are Engulfed in Flames. (I dare you to read “Stadium Pal” aloud beside the Yule log, and to get through it without collapsing.) Even better than reading Sedaris is hearing him read himself, so it might be worth considering a gift of the audiobook.

At Amazon, $23.09.

Easy Listening with
audible.com

Speaking of audiobooks, for all eyes and especially for eyes with Parkinson’s, it’s great to get a rest from reading. It’s also wonderful to hear every word a writer took the trouble to write. Listening is just a different experience from reading. It feels somehow sybaritic, self-indulgent, as a human voice does all the work and draws you in.

Audible.com is a service that offers digital spoken versions of over 18,000 audiobooks and audio programs. For a gold membership at $14.95 a month, you accumulate credits that can be traded for an audio downloads. Members also receive a 30 percent discount on audiobooks and a complimentary subscription to the audio version of the New York Times or the Wall Street Journal.

When I first joined audible, I tended to forget I had it. Now I’ve gotten into the swing of using it, and it’s a joy. With cheering regularity, I get hours of high-quality listening…and serious reduction in eye strain.


Everybody Needs an iPod

Do you find the above statement a bit sweeping, a tad hyperbolic? Well, consider: Who goes to the dentist? Just about everybody, right? During a recent dental marathon (don't ask), the only thing that saved me from meltdown was my trusty iPod, which covered the noise and vibrations with blues, country, and girl groups of the 60s. I just had to consciously refrain from humming along, lest my dentist think I was in pain.

There are many kinds of iPods and Mp3 players you can buy. But for simplicity, ease of use, and peerless Parkinson's-related name-irony, I'll take the Shuffle. It has room for lots of songs and podcasts, the controls are basic and easy to manipulate, and it's tiny, light, and unobtrusive.

It's also therapeutic. The positive effects of music on gait and balance are well documented. Hook yourself up to some musical accompaniment and your shuffle just might try to turn into a sashay.

The iPod Shuffle will work with either a PC or a Mac and is available at most electronics stores.

At Amazon, it goes for $46-$49 for the 1G model. (Price varies for different colors.)

Speaking of music: You can sample some of my favorites, thanks to finetune.com, by scrolling to the bottom of this window and clicking on the playlist called Moodswings. Just be aware that you get a limited number of skips. Then you have to listen to whatever comes up. That's the price of free music!

photo by wan • der • lust at flickr.com

Parkinson's and the Police

Periodically, stories surface about Parkinson's symptoms arousing the suspicions of police, leading to harassment and humiliation for someone whose sole offense is being unable to be still or walk a straight line.

Such an incident occurred recently in Ashland, OH, where Bob Kendall went out for a late night walk. Officers stopped him, believing he was intoxicated, and then took issue with his constant moving. The episode ended with Mr. Kendall on the ground and handcuffed. He was released only when another officer recognized him and explained that he has Parkinson’s.

People with Parkinson’s (and everyone else) deserve to be treated with understanding and respect. Realistically, though, there will always be ignorant people and bullies in the world, and some of them will wear badges. So, what to do?

A Google search led me to Flex Your Rights, a not-for-profit whose mission is "teaching people to understand, appreciate, and assert their constitutional rights during police encounters." I asked Associate Director Scott Morgan if he had any advice for those of us whose movement disorders make us noticeable and vulnerable to police. He wrote:

There's nothing worse than being hassled due to a medical condition. I would hope that informing police of one's condition would usually diffuse most situations.

The gentleman was walking around late at night, which is fine, but may have contributed to the perception that he was intoxicated. Folks that are out and about after dark should be mindful of the potential for misunderstandings and be prepared to explain their situation if necessary in as calm a manner as possible.

It's easy to become frustrated with officers, but it doesn't help, even when it's totally justified. Police approach you with the assumption that you're a troublemaker and, unfortunately, it's up to the suspect to demonstrate otherwise.

If anyone is treated disrespectfully, I would recommend filing a complaint and publicizing any mistreatment that occurs. These types of incidents may help to educate police about dealing professionally with Parkinson's sufferers.

Given Scott's advice and Bob Kendall's experience, I plan to make up a Parkinson’s ID—a simple card that states my name, says I have Parkinson’s, and lists my contact person, physician, meds, and allergies. (I've found vistaprint.com to be a good source for cards.)

I'll keep a card or two in my wallet with my license and stash some by the driver's seat in my car. Then I can just hand an officer a card without speaking, a good thing because a) I might be too nervous to speak, and b) the less said the better, as you will see if you spend some time at Flex Your Rights. Check out their Street Stop Scenarios, as well as their video, which I found to be eye-opening. The examples in the video are mainly geared for young people, but the principles apply to all. Everyone should spend some time with these resources. Pass them on.

If I do have the misfortune to be mistreated by police, I'll turn to the internet to get the letters, calls, and e-mails flowing. Bob Kendall did, and police, city officials, and the local paper were flooded with letters and emails protesting his treatment. He performed a valuable public service and got a bit of his own back, too.

photo from dwightsghost on flickr.com

Balancing Acts

On August 7, 1974, Philippe Petit stepped onto a wire between the towers of the World Trade Center and enthralled New Yorkers with a breathtaking, impossibly daring performance—a singular mélange of focus, nonchalance, courage, beauty, and joy.

This week we mark the anniversary of the loss of the towers: seven years since that mild, clear morning gave way to ashes, flames, and dust. Up the Hudson River, where I live, you could smell the smoke for days.

As we all turned for comfort to family, friends, and neighbors, I felt fortunate to have recently found a virtual community on the Parkinson's Information Exchange Network Online (founded by Barb Patterson and John Cottingham, now going into its tenth year). On the email listserv of this site, PwPs of varying ages, stages, and nationalities exchanged information, stories, support, and humor. There were occasional scuffles and sulks, too, which only heightened feelings of being accepted, real, alive.

In the days following September 11th, many of us felt so alive it hurt. Like crabs who had shed their shells, we existed in a state of intense vulnerability and awareness that was almost too much to bear.

It is said that every loss stirs memories of other losses. For those who live with a degenerative illness, the consciousness of loss is never entirely absent, and each day is an emotional tightrope. We people with Parkinson's develop great skill on the wire. But when some extra, unexpected disaster comes at us, it's easy to fall off.

With normal reserve and defenses cast eroded, listserv discussions in the aftermath of 9/11 became increasingly vehement and political. The list began to fall into factions. One insisted that discussion be limited to topics directly related to PD, while the other declared that by excluding broader topics we artificially cordoned ourselves off and denied our role in the larger world. Remembering that discussion, I searched the list archives and found that around this time, well before Stephen Colbert and The Word, someone had posted the following:

Today's Word: Solidarity (Noun)
Pronunciation: [sah-lê-'dæ-rê-tee]
Definition 1: A unity of interests, objectives, standards and sympathy that results in community.

I can't think of a better word to honor this anniversary, as we struggle in arenas large and small to find unity and community.

Remembering Murray Charters and Camilla Flintermann, guiding lights of the list and extraordinary human beings. They are missed.

The exploits of Phillippe Petit and his band of co-conspirators are the subject of a remarkable documentary, Man on Wire.

photo by Tony Hoffman from flickr.com