The end result of becoming a “bionic woman” was the disappearance of the worst of my Parkinson’s symptoms. The ones that haven’t disappeared are fairly easy to live with. My dyskinesia is gone. My balance has returned and I have not fallen since the surgery. I can go to restaurants and eat like a normal person without embarrassing myself or my family. I can get up from a chair and walk smoothly and quickly picking up my feet, without walking on my toes. My posture is erect. My speech has improved. My sense of humor has returned. (I did not have a tremor in the first place so that was not an issue for me.) Freezing is still sometimes a problem, but unlike before surgery, I can break the freeze quickly. I can sleep more than four hours a night and turn over without having to completely wake up.
I’ve had Parkinson's disease for 17 years. I was 33 when I started showing signs that something was wrong. I found I wasn’t using my left hand, was getting toe-curling cramps in my left foot, and wasn’t swinging my left arm when walking. I had just finished a Master of Fine Arts program in sculpture.

In the time span of seventeen months my life changed completely. I got my degree, got married, had a baby, and was diagnosed with Parkinson's disease four months after my son was born. My husband Michael’s life changed as much as mine did. I am grateful that he became a part of my life. Michael did all the child care when he was home and became our son, Jonah’s primary parent. He has kept the commitment he made to me when we got engaged, the day before I went into the hospital for tests for what they thought was MS.

I avoided starting sinemet for three to four years and once I started taking it I only had a year before I started having trouble with dyskinesia. I was 40 by this time. I was then diagnosed with breast cancer at 41. At that time, for some odd reason, the breast cancer diagnosis was easier to handle than the PD. It would either kill me or they would cure me. At least I didn’t have an unknown, hopeless, future that terrified me the way the PD did. I was lucky -- they caught the cancer early enough that ten years later I’m still here.

Controlling the dyskinesia while still being able to move became increasingly difficult as the years progressed. After ten years my marriage was showing strains. Doing things with my family became increasingly more difficult. Vacations were a strain on Michael. He never knew if I would be able to walk when we got to the museum or restaurant, or if I would be jumping out if my skin. We had to shlep the wheelchair everywhere just in case. I had reached the point where, when my meds weren't working, I couldn’t move and when they were working I would be dyskinetic until they leveled off and then smooth for about fifteen minutes, then off. Some days I couldn’t move no matter how much medicine I took. Other days I couldn’t stop moving. (This fluctuation usually corresponded to my menstrual cycle and administration of natural progesterone helped a great deal.)

The dyskinesia changed my personality. I had become like an amphetamine addict. I was driven. I wanted to do whatever I wanted to do. I couldn’t stop talking even when I didn’t have anything to talk about. I resented anyone telling me what I couldn’t do and really didn’t care if I got hurt doing it. It's a wonder I still had friends. I became a regular at the emergency room. I cut myself, split open my chin, broke teeth, broke toes, and got second degree burns on my neck when I fell while cooking and pulled a pot down on myself. Both Michael and I had become depressed, hopeless about the future and I didn’t like myself anymore. Even though he love d me I don’t think he liked me either. I felt more like a creature sometimes than a woman.

It was important to me to keep making art. I believe it's what kept me going, kept me sane,and out of major depression. It takes me out of myself and puts me somewhere else for a while. I have managed to keep doing artwork throughout. I developed an attitude: if I only had two to three good hours a day I wasn’t going to spend them cleaning . As a result my housekeeping suffered greatly.

I believe it my son was the force that kept me moving when I didn’t think I was able to. It was hard to chase an active two year old with a disease that slowed my movement considerably. I was frustrated I couldn’t do things with him like other moms. I had to limit my driving and it took me forever to get anywhere. He was frustrated by my limitations. He once told me that he would rather think I didn’t want to do things with and for him, and be angry at me than accept that I was unable to. He has always forced me to move and to stretch my abilities. I believe that his denial is often what kept me from giving in to the disease. I might feel sorry for myself but I still had to keep it together for him and Michael. He’s 15 now and somehow has managed to become an exceptionally intelligent young man who is affectionate and open about his feelings. He did not want me to have this surgery for fear of losing me. He has now seen me smile and laugh for the first time in his life and even though I haven’ t been roller blading yet he now believes it’s possible I think he is what made both Mike and me keep it together. I couldn’t give up and stop moving when he was little because his safety was at stake. As he grew into a young man, he deserved to have a mother. I felt I had to do something.

I knew I didn’t want a palidodmy. I had heard about the successes they were having with implants for tremors and knew about the fetal cell transplant, but wasn’t ready to go to Sweden. Besides I wanted to see five year results. When I heard they were doing a study at Pennsylvania Hospital with implants that would alleviate my symptoms and can be removed when they discover a cure, I made an appointment to find out if I could be a candidate. Because of my age, attitude and otherwise good health, they accepted me. This was August. I had to get an MRI, blood tests, psychological tests and probably a few others I’ve forgotten.

They performed the surgery before I or anyone else had a chance to scare me out of it. Once in the operating room, I put my faith and trust in Dr. Baltuch and the other ten people working with him. The seven-hour procedure was grueling at times but what I heard in the operating room was a team of professional and caring people who knew what they were doing. No one had an inflated ego and the nurses made sure I was comfortable. I was able to relax and doze off periodically. The first dramatic thing to happen was that my jaw, which had been clenched for at least ten years, relaxed when Dr. Baltuch connected the electrodes to test to them on the operating table. I had gotten my face back.
I was out of the hospital by the end of that week. The stimulators were programed low at first so that I would take it easy. The stimulators are controlled with magnets and Dr. Simuni can program the amount of charge they put out with a computer in her office. A week later I went back to be re-programed and the next day I was moving around almost like I was well.

Unfortunately, magnetic fields can also turn the stimulators off so I have to be careful with store security and automatic doors and remember to carry a little transistor radio to test whether the stimulators are on and a heavy magnet that turns them off and on. The other minor inconvenience was the magnet in my purse demagnitized all my credit cards.
My handwriting didn’t get bigger, but smaller, yet it's a little more legible. No longer having dyskinesia to burn off the calories, I gained fifteen pounds. My clothing not fitting and replacing my credit cards was a small price to pay I think.
Six months later, I have been working out on an exercise bike and made a 45-mile ride on the back of a tandem. Both Michael and I are hopeful and planning to live life to the fullest. Jonah, my son, can hear me laugh and is willing to be seen with his parents, amazing for a fifteen-year-old. Mike and I took ballroom dancing lessons. It feels like we are newlyweds sometimes.

I walk to the train by myself, take it downtown and meander from Pennsylvania Hospital to Suburban station. I am no longer depressed. I am content to do things I was never able to-do like polish my nails. I’m on half the medication I had been taking six months ago. In short have my life back thanks to research, Medtronics, Dr. Baltuch, and the staff at Pennsylvania Hospital.

KathY Harris