MY DBS EXPERIENCE

If you read this section of the July issue of No Parkin’ Zone, then you will know that I was planning on having Deep Brain Stimulation (DBS). It is now a fait accompli! I had my first surgery on August 16, at New York Presbyterian Hospital and the second one on August 26. In the first operation the neurosurgeon implanted the wires and electrodes in the brain. This is the surgery where the patient must be awake to answer questions and perform certain movements to verify the correct placement of the electrodes. The strange thing was I fell asleep when the surgeon was shaving the hair from the front of my head, and woke up when the surgery was finished. It took 5 1/2 hours to complete. The surgeon says that they woke me and I answered their questions; but I have no memory of it at all. The neurologist told me that it is a form of amnesia caused by the anesthetic I was given. This is fine with me. I had no desire to hear the drill boring holes in my cranium.

In the second surgery, ten days later, you are under general anesthetic for the implantation of the (in my case two) stimulators which are placed in the chest under the collarbone. During this part of the procedure, all the wires and connectors were put in place and hooked up. This surgery took four hours. I was ready to go, except for one thing. I had to be programmed!

Twelve days later I was back to have my first programming session. It was a four hour appointment and I was programmed three times by two different doctors. My husband Pat had been calling me the Bionic Woman for weeks, but now I began to feel like that exact thing. I was given the Access controller (the device that turns it off and on) and told not to open it. I was curious but I did not peek. The programming was fascinating especially since the doctor who was doing it was teaching another doctor about how the procedure was done at the same time. So Pat and I learned much more this way.

I went home to watch and see what would happen. At first I saw little things that gradually became big ones. I seemed more able to get around in the house. It was easier moving, getting from room to room. Two days later when I first went out, I was astonished at the reaction I was getting from people. They came up to me and exclaimed, “You’re standing! You are not in your wheelchair.” There sat my empty wheelchair while I stood because I didn’t need it.

This was at a Parkinson’s Awareness Walk. The

next day I got more of the same reaction at church. I haven't used a wheelchair since in the house or outside. I get along very nicely with a walker. I can stand up and hold my head up. It has been bent down on my chest most of the time lately. My dyskinesia is not entirely gone, but it is under much better control, only affecting my feet and legs.

I return to New York for a second programming session on October 19th. I look forward to this to see if the doctors are seeing the same progress that I am. Also I am eager to find out how much farther we can go this time. This surgical procedure has given me hope for the future and a vastly improved outlook about the quality of life ahead of me. I can honestly say I feel like a new person.

By the way, I should mention here, I am not the first member of CNYPSG to have DBS. Frank Capcino had it done in Philadelphia several years ago. Frank is our pioneer!

If anyone would like more information about DBS, feel free to call me at 315-866-3594 or e-mail me at glynnismoy@aol.com, or write me at 705 Ronald St., Herkimer, NY 13350.

Marge Moylan

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A BIG THANK YOU to the folks who volunteered to work at our booth at the Health Fair at Sangertown Square on Saturday, September 25. We were there from 8:30 AM to 8:30 PM and had a total of 15 people to cover the time. In addition to the McCaffreys and Moylans and the usual help from Jack Busacker and Barb

Grogan, new health fair workers were Erhard and Margaret Gantner, who were there at 8:30 to set up, Wally and Elaine Kellogg, Bob and Roberta Schaal, Evelyn Petrie, Bruno Piretti, and Baden Mudge, who stayed to the end to help us pack up. Thanks to all of you.

Keep in mind, we will be needing lots of help for our symposium coming up on Saturday, October 23. That will be at the Hart’s Hill Inn in Whitesboro from 9:00 AM to 3:30 PM. We will also be looking for volunteers to help out in getting things ready at our regular meeting on the 19th of October. Don’t forget, this symposium includes a free lunch and morning coffee, but you MUST make a reservation by at least a week ahead of time. It has been noticed of late that some people are getting pretty casual about making reservations for our activities. We know people are busy and sometimes things just slip our minds. Please try to be more considerate. Please pay attention to those deadlines dates.

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