Monday, August 3, 2009


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.


1. Goulston, M. Living through wanting to die. The Huffington Post, July 9, 2009.

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

Friday, February 13, 2009

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.”

Wednesday, February 4, 2009

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:

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.

Reading Matter

  • David Howes, editor. Empire of the Senses: The Sensual Culture Reader. NY: Berg, 2005.