Barbara Winkler presented to the U.S. Food and Drug Administration Neurological Devices Panel examining the reclassification of electroconvulsive therapy (ECT) devices on January 27, 2011. These are her remarks as published in the public record of the meeting.
My name is Barbara Winkler, and I am 49, almost 49. I was born in 1961. My diagnosis is bipolar, and I’m also a recovering alcoholic. I was financially supported here by my husband who works very hard to put up with me and paid for the ticket for me and us to come here all the way from the state of Washington.
I can’t ramble off all this technical stuff, but I can say that I want the FDA to really take a look at the harm these shock treatments have caused and do some new research before they reclassify it. New studies need to be done. I haven’t heard, you know, too many issues or people talking about the cognitive problems, but I have cognitive problems, and until there’s a way to know how many treatments are being done and who’s monitoring all these psychiatrists around the country — I had over 80 shock treatments and, yes, they called them maintenance treatments, but I don’t remember my wedding day. I don’t remember putting the ring on my finger.
I’m also a college graduate with a bachelor’s in science from Grand Canyon University in Phoenix, Arizona, and I don’t remember any of that. I do remember my anatomy and physiology class and unzipping a cadaver and little bits and pieces, but I don’t remember details. I also was a professional athlete. I competed in the Hawaiian Ironman and finished. I don’t remember finishing, but I know I have a metal that says I did. I have boxes of trophies that I tell my husband to go ahead and put in the attic because when I open those boxes and pull out a trophy and it has my name on it, I don’t know who that person is. I know it’s mine, but there’s a separation between that person because I don’t have the feelings or remember the feelings or the events or the traveling I did when I was sponsored as an athlete. So I really think there’s need to be some research done on the cognitive effects and the long-term effects that ECT can have not only on the past memories or the memories around the shock treatments, but even new things today.
We’ve lived in the same house, and I still will come home, and — you can laugh because it was kind of funny, but it wasn’t — I used the car little button that you press to lock your truck and was talking to my sister on the cell phone and was trying to open the front door with the little remote. You know, I can kind of laugh at myself now, but it’s really not funny — or using my dad’s house key who’s 89 to try to open my car door or trying to learn information, trying to learn new numbers, trying to go to college, trying to be a productive citizen. I’m on Social Security Disability. That’s probably costing us all right now since 1999, probably 80 to 100 thousand dollars. While I hear there’s not enough money to do new research, well, so we’re just going to make a bunch more people developmentally disabled by giving them more shock treatments before we really know what we’re unleashing?
I remember reading something about Ernest Hemingway, and it goes back to when they did shock treatments a long time ago. Well, he was born in 1961 — or he committed suicide in 1961, and that’s when I was born.
He said something to the effect that he couldn’t remember anything and he couldn’t do what he loved to do, so he took his life.
You say that ECT doesn’t cause problems. It just burns people, and you don’t get burns from the electrodes and you don’t break bones? Well, I’d almost rather have broken bones and burns on my body than be mentally unable to learn new material.
So all I can say is take caution. You know, there needs to be some kind of legislation out there for each state to monitor how many of these treatments that the doctors give. In my case, Medicare paid for it. Oh, so Medicare pays for it. So the doctor just signs off on it, and they keep doing more and more and more. There needs to be some parameters with these treatments.
And my mouth is really drying out. So you don’t need to ring the bell for me. I’m just going to leave. But thank you, and please spend some time before you make a rash decision. Thanks.