This was my introduction to Parkinson’s. My little finger impatiently paced on its own. Here I was, a keyboarding teacher with a finger that stuttered. I could still teach English or French, but what kind of luck would I have with a body that would shake, rattle and roll in the classroom? I could teach piano lessons, if I took enough meds to hold my hands steady on the piano. But that much medication made me drowsy, affecting my balance. What kind of teacher keeps running into the furniture everywhere she goes?
Falling over furniture, or out of bed—showing bruises all over my legs became the rule, not the exception. The year was 1992; the same year that Michael J. Fox was diagnosed with Parkinson’s as well. It seemed so cruel that the man from Back to the Future must now spend time in his insufferable present.
My own lively, vivacious mother was suffering from the devastating complications of advanced Parkinson’s. Over time, I had watched the disease take over her body. I guess I was next in line. I was exhausted from worry and taking care of my mother. The weight of this new reality landed heavily on me, and my family.
My husband and I discussed the options as Parkinson’s slowly began to take over my body. There were no good solutions. By 2006 I was on more medication than most patients, but this did little to slow the advancement of the tremors. I heard about a new study on new, cutting edge treatments, but my application was rejected. My hope was crushed. A new doctor gave me, essentially, two options—DBS (Deep Brain Stimulation) surgery, or nothing. With my body increasingly rocking and rolling, and now my speech being affected as well, it was not much of a choice, really. Continuing “as is” was not an option. I couldn’t live with the spectacle I was becoming, with deep involuntary movement constantly on full display. Wherever I went, I was running into people or things. I was afraid to walk into anyone’s home. I felt like crying every time I fell or nearly fell. My emotions were beginning to control my actions. I hated to be in public. I was withdrawing.
I chose DBS. The decision gave me a measure of hope, but it would not be an easy road. It would be a delicate surgery. My hair would have to be shaved off. Silly consideration, I know, but significant to me. Without a doubt, I had the most brown and curly hair that anyone had ever shaved off a head. Funny, I never really appreciated my hair, until it was gone. The day of the surgery came and I was bald. I looked like my father! My husband came into the hospital room and said, “Nice to see you, Harold!” He was trying to make me laugh, but I was hurt and angry. I was ready to jump up and start hitting someone. If only I could have gotten off the bed! Instead, I just closed my eyes. I knew this was only the beginning. It’s funny what goes through your mind at times like these. I had received a few scarves in the mail from friends. But I felt offended because I would be using them to cover the real me. Three of four people who’d had their heads shaved for surgery sent me photos that were supposed to give me courage. Everyone seemed to be in agreement that this was the best choice—that I should go ahead with the surgery.
Now, at the moment of truth, I was scared. Despair set in. Would I lose my memories? Would it still be me after they opened a hole in my head and threaded wires into my brain? What if they missed? I couldn’t stop thinking about how I would be awake during the surgery. What would that be like? Would the surgery be successful? Would it reduce the tremors? Would I even remember?
I had to believe this would help. I took solace in the thought that the procedure had a high rate of successful outcome. If it worked for me, it would change my life. No more tremors. No more running into everything. No more spectacle. I blessed the electrodes about to be implanted in my brain. If they did their job, they could give me my life back.
That morning, the doctors had given me an anesthetic in preparation for the surgery. I woke up to the noise and vibration of the drill on my skull. I could feel the pressure, but no pain. My head did not wiggle because it was locked in a stabilizing device. I could smell the bone dust. My bone dust. Then, suddenly, the drilling stopped. I felt the wires being inserted and moved around inside my head. I could hear people talking around me, asking me if I could open my eyes and answer questions. They found the wire positions that would stop the movement in my legs. I still had no pain. I tried to stay calm. But the idea that someone could do serious damage was still there, lurking in my thoughts.
When I came out of the anesthetic, I was back in my room. Instantly, my brain was working overtime. I panicked. I couldn’t breathe. I began choking with anxiety. I couldn’t shake the feeling that I was no longer the person I had been. I was sure the drilling had taken all the good parts out of my brain. I was surprised to see my daughter and my husband standing next to my bed as the nurses were sounding alarms and calling for the doctors to return. But then my daughter put her hand on my chest and said, “You’re all right, Mom. Just breathe.” I began to cry and gradually the choking subsided.
When I finally opened my eyes, I saw my husband—with no hair! I began to laugh and I recalled a poem called “Emmanuel Garcia” that I had read to my middle school students about the members of an entire family who had shaved their heads to keep their mother smiling after her surgery. I guess my memory still worked.
Now, two years later, I’m still here—walking, talking, and even keyboarding. Most people are surprised to learn that I have Parkinson’s. The procedure worked better than I believed was possible. I am truly blessed. I wake up most mornings with a positive outlook on life. I’m learning the benefits of exercise and diet improvement. I have much to learn. I tire easily. My husband says that sometimes I cry out in the night. My once beautiful brown hair is growing in grey. But I am grateful: for family, for friends, for time and quality of life. I look at the scarves I received from my good friends. They remind me of a beautiful, difficult journey.
Judi Sundsted was born in Portland, Oregon, the youngest of six children. We lived on a farm west of town where we grew fruit and nut trees, grapes and black caps. My fondest early memories are of roaming the fields and hills—carefree and happy. Growing up, my mother would tell me to “Clean up your plate, child. Think of all the starving children in Africa.” It captured my imagination. I decided then I would go and see for myself when I got bigger. After earning my first teaching degree, I married my college sweetheart and together we set out to see the world. With a deep faith and a pioneering spirit, we started a lifelong adventure, eventually teaching and leading humanitarian efforts in Ghana and Burkina Faso, Africa, Newfoundland and India. It was rewarding work. My Masters in English enabled me to interact with incredible students from the elementary level, all they way through my favorite: the university levels. We raised a beautiful daughter and then watched her raise a family of her own, giving us four amazing granddaughters. I loved the people in every country where I served, making many wonderful friends around the world. In the early 90’s I was diagnosed with Parkinson’s disease—and began a new and scary adventure. The past few years have been such a learning experience. I am so thankful for advances in Parkinson’s treatments, including DBS (Deep Brain Stimulation) that has allowed me to continue enjoying many of the simple things I love—writing, playing the piano, even riding a bicycle. Retired now, we make our home in Las Vegas, Nevada, enjoying being close to our daughter and her family.
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