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by Dee Linde, M.A.

In 1997 I was diagnosed with medication induced dystonia, also known as tardive dystonia. I didn’t want to believe it. How could I have allowed this to happen? I felt so enraged, confused, scared, betrayed by my body, and alone. I was given a life sentence for a crime I didn’t commit. My entire upper body, including my eye lids, was affected. My arms were constantly moving, and the muscles spasming. I had torticollis, and severe spasms in my back and shoulders. Breathing was difficult and I felt as if I were being squeezed in a vice. I was not able to chew due to jaw spasms, nor could I do any fine motor skills with my hands, like feed myself, button my blouse, or zip my jacket. I spent two years lying on the floor because it was the least uncomfortable place for me.

Over the next several months I withdrew from everything and everybody, and began my descent into the black abyss of depression. I was grieving all I had lost – my health, my private practice as a Marriage & Family Therapist, my independence. I could no longer drive or take my dog for a walk because I had blepharospasm. The simple act of feeding myself was now a major chore. I had trouble brushing my teeth because my hands and arms would not cooperate. I did a lot of heavy sobbing, which is part of the healing process and part of the soul’s response to loss. I also wrote in my journal (as best I could), as I have done since I was 12 years old. I knew my work was cut out for me. Somehow I had to redirect my rage and make friends with my captor. I wrote letters to “the dystonia.” I became “the dystonia” and wrote letters back to my Self. I did endless searches on the internet to find out all I could about dystonia.

Like the Phoenix, I had to raise myself from the ashes and start building a new life for myself. The first step was to learn to ask for help. My husband has always been a kind and gentle man and without his love and support, I would not have made it. My dog was my other pillar of support. At some level, I believe he understood. It was his unconditional love and acceptance that got me out of bed everyday. Most of all, it was the support and camaraderie from the people on the various dystonia bulletin boards that helped me out of the depression and back to being a productive human being. Having a sense of humor and being able to laugh at myself has been helpful too.

I think when one is faced with a chronic illness and the losses associated with it, the descent into and ascent from the abyss has to become a spiritual journey. The healing process is one of Body, Mind, and Spirit. The ultimate goal is to become friends with yourself again and honor your own existence.

Leery of traditional Western medicine, I wanted no more drugs in my body. However, I reluctantly agreed to try the different medications used to treat dystonia. None of them worked for very long, and I was beginning to feel hopeless again. Then I heard about deep brain stimulation surgery (DBS), researched it and made an appointment with a neurosurgeon and Movement Disorder Specialist. They agreed I was a good candidate for bilateral DBS. In March & April of 2000 I had the surgery, with one lead being placed on each side of my brain, and one battery pack or pulse generator (IPGs) implanted under each clavicle. I had symptom relief immediately, except for blepharospasm. I was told that DBS would not help with the blephs, and could even make them worse. I began getting Botox injections for the blepharospasm, and was again able to drive. However, by July 2003, the blephs had gone into remission and I no longer need Botox. Now, some neurosurgeons are doing DBS surgery specifically for blepharospasm and Meige and getting good results.

Deep Brain Stimulation is rapidly becoming one of the leading surgical treatments for most dystonias. Many DBS recipients, including myself, are experiencing miraculous results. However, we must keep in mind that DBS is not a cure, but rather a temporary fix for a permanent disorder. How temporary though? Ten years, 20 years? No one really knows for sure.

The most common questions concerning DBS surgery are about the physical side effects. Seldom are the psychological effects mentioned. Many DBS patients report feeling nervous and scared weeks before their surgery, but as the surgery date nears, they are filled with a sense of calm. The surgery is the easy part, and just the beginning of what may be, for some, a very long and frustrating journey to Optimum Settings. Many DBS patients experience a “honeymoon” period (also known as the microlesioning effect) immediately after surgery, even before the stimulators are turned on. Symptoms may disappear altogether, only to return within about two weeks as brain swelling goes down. This can be extremely frightening, and discouraging. What if there is no honeymoon period, and no symptom relief for months? And what if there is minimal symptom relief after months of programming? This, too, can lead to despair. Reaching optimum settings can take anywhere from three to twenty four months. Everyone responds differently, and the one piece of advice I stress to new DBS recipients is to have PATIENCE.

Those who have had dystonia for a long time become masters at accommodating and adapting to the spasms and other bodily changes. It takes time to adjust to not having spasms. One DBS patient said that because she had become so adept at compensating for the negative effects of dystonia, she missed some of the subtler signs of improvement. Many people with dystonia are shy and withdrawn, finding it difficult to be in social situations, not knowing from day to day, or minute to minute how their body is going to respond to any type of interaction with others. Life after DBS can be equally isolating. Symptoms may suddenly stop, but the mindset may not change as quickly. We must give ourselves & those closest to us time to adjust to the changes. For some, depression is a common side effect of DBS.

At first, the thought of being battery operated gave me a sense of uneasiness. Was I human, or a robot? Maybe I was half human, half robot. I really had to come to terms with having all this hardware in my body. Was this yet another betrayal by my body? I remember writing to the pulse generators (batteries) and to the leads in my brain. I had to make friends with these invaders, learn how to co-exist with them, and rekindle a friendship with my Self as well.

DBS has given me back my life. I know many others who have had DBS, and no matter how big the improvements, or how little, I have never heard anyone say they would not do it again in a heartbeat.

Dee Linde is a retired Marriage & Family Therapist. She lives in Oregon with her husband Wayne, her dog Lily, and her cat Spot. Dee is the founder and moderator of the on-line support group DBS for Dystonia. You can e-mail her at medicinedog2001@yahoo.com , or visit the web site at http://health.groups.yahoo.com/group/DBSforDystonia/

My mom and I wanted to thank you for hosting such a great symposium this year. This was our third year and we are looking forward to next years. E. Mathews