How DBS changed my life

By Debbie Harrison, January 23, 2001

I was asked to talk about "How DBS has changed my life" tonight. As I sat at the computer the other day thinking about what I was going to say I thought-"Well for one thing I can type at the computer and write this speech" and that is something .

What was my life like before DBS? I had had Parkinson's for 14 years and managed to run a support group on Long Island, did a monthly newsletter, was in the choir at church, went square and round dancing 2 or 3 times a week with my husband, was the club reporter for our square dance club, and went away for dance weekends monthly. I was an active, independent woman.

Then in my 15th year, all hell broke loose! What used to be a normal, everyday thing for me became a major mountain to climb. The medicines that I had been taking began to have strange effects on me. My body was no longer under my control as it went from bradykensia to dyskinesia. One of the drugs turned me into a food addict. I was forever hungry causing me to wake up in the night and eat! Needless to say, the weight came on and stayed on. After putting on 35 pounds, I got to the point when I had nothing to wear. The local Penney's was going to relocate and bravely I drove the mile to the store. I spent a long time carefully going over the sales racks, because I was sure that this was just temporary gain!. After carefully selecting several things, I went to the dressing room to try them on. I took off my things and froze . No, I was not chilled. I couldn't move. It was a terrible feeling. My meds were in the car because I did not bring my pocketbook so I could search for bargains. The feeling of panic, was awful while I stood in my underwear, in the dressing room, with mirrors around, looking at this fat lady! It seemed like hours to me, but then I finally was able to move slowly, I put on my clothes, shuffled through the store out to my car and somehow drove that mile home. God was with me for sure! Of course, after that we got a cell phone so that I could call my husband. I took extra meds that had me dyskinetic and I went back to the store another day. I picked everything out again and took them home to try them, with my body sitting safely next to my husband who was on call. A woman never misses a good sale!

In addition to the weight gain, there were battles with nausea, edema in my ankles, strange rashes over most of my body that itched, oozed and made my skin like leather. After weeks of suffering from the rashes and trying to get compression hose on legs that were running, and the awful heat of summer, it was only our sense of humor that kept us going. When my poor husband would get up early, and half awake, would struggle to get those stockings on my legs, before they touched the ground! I remember the first night. It took the 2 of us 15 minutes and a whole lot of sweat, laughter and tears to get them off.

After a short time off those medicines, the doctor put me on Sinemet CR only. He said to take 5 pills a day of 25/100CR. I might as well have been carved of stone because this left me so bradykentetic that I was unable to function. We gradually kept adjusting the amount of Sinemet until I was talking about 13 pills a day. I remember going to church on Mother's Day, not feeling well and having someone drive me home. With my husband's help, I got up the stairs, went to bed and slept. When I got up, we had dinner and I had wild dyskensia for 8 hours. My dinner was only a yogurt and chopped banana. This was spoon fed over a long period of time by Bob. It was not one of the 10 best holidays. The following Friday night, while eating dinner and getting ready to go out to a show, I started with dyskinesia, pain and numbness down my left arm, nausea, tightness in my chest and was unable to catch my breath. My husband rushed me to the emergency room of our local hospital, where they took me immediately, it took them almost 3 hours to stabilize me. They let him back in and we spent the night in emergency until I sent him home at 3:00 AM, because they had no bed in ICU. Five days later after being held in ICU, and monitored constantly, they let me go home after passing a thalium stress test. My so called "heart attack" had apparently been an overdose of Sinemet in my system.

During all this time we had been coming to the "We're Rewired for Life" meetings learning more and more as we spoke to to Dr. Kelly, Dr. Beric and other patients. I remember meeting Dr. Kelly and he asked "Why do you have such an interest in DBS?" I told him that I might want the surgery one of these days. He said "But you look so good" and I told him that they would write that on my tombstone "She looked so good, but she died anyway!" It has been a long standing joke now.

To a stranger's eyes I might have looked "so good" but people didn't know the struggles and embarrassments that we had to live with. Having no control over my life. I never knew if I would be able to move or not stop moving. I had to give up driving which was very traumatic for someone who had always been independent and was still only 57 years old. We had to give up dancing, traveling, it was difficult to write, my eyes would not focus properly due to "ons and offs" of my medicines and I was no longer able to enjoy a book unless it was large type. When we went out to eat, my dyskensia never failed to come along and the food would end up on my clothes and the floor. I was no longer able to manage the stairs up and down from the choir loft, and was afraid to lift my granddaughter. My foot which had been run over by an automobile in 1981 was deteriorating badly. I had to wear orthothitics at all times and the clawing of my toes literally wore out holes in them. My foot was in constant pain because it never stopped moving and clawing. The podiatrist said he could do nothing to help until I got the Parkinson's under control. Dr. Beric had told me at our appointment that this was a major decision to make about the surgery and I had to be sure about it. Many nights I went to bed and had nightmares about DBS. Then one night I went to sleep with peaceful dreams and woke up ready to proceed. During the time I had to wait, I continued to feel that I had made the right decision. Anne O'Sullivan had scheduled me for all the tests I could have in advance in case of a cancellation. Lo and behold, on Friday, Oct. 20 as we were packing to leave town for my brother's retirement party, the call came from Anne. The patient that was scheduled to go in on the 24th had not passed medical clearance. Was I interested? We had 1/2 hour to decide and I knew that this would work out. We had a full weekend ending with a support group meeting. I told my group at the end of the meeting that I was going in for pre-op etc. the next day and surgery starting on Tuesday. Thankfully, I didn't have time to worry or get nervous! In fact I was so calm that I began to think that there was something wrong with me!

Am I glad that I had DBS STN surgery? The answer is a resounding “YES”. My life has become almost “Normal.” I can plan things, eat like a lady, write checks that the bank can read, use the computer, drive, put CVS drugstore out of business cutting down on medicine and we are dancing again. Our son got married 6 weeks after the surgery and we went upstate for it. It was great to see all the family again. I had been taking about 17 pills a day of Requip, Eldepryl and levodopa/carbadopa 25/100. Now I am taking about 5 pills of Requip, 2 Eldepryl and 3/8 of a 25/100 of Sinemet broken into 1/8 taken 3 times a day. Many days I am able to skip 2 of the doses of Requip. Sometimes I have to take a little more Sinemet when we are dancing. My day runs from meds at 7:00 AM, arising at 8:30 AM until midnight or later each night. We are often out 4 nights a week or more. I hope to be able to cut the medications down even more.

I am most grateful for Dr. Kelly's, Dr. Beric's, Dr. Sterio's, and Patty Taverna's expertise and the friendship and knowledge of Anne O'Sullivan.