Pam Garritano – My Birthday Gift

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Today was one of the best days in my life. I had the Deep Brain Stimulation Surgery last August and September, and, after the surgery I found myself feeling depressed for the first couple of months. The depression was due to seeing no results involving my head lifting off my chest. I was beginning to feel frustrated going back and forth to Gainesville and spending hours in a room only to leave with no improvement. I knew I was supposed to give the process time; however, it felt like another medical procedure had failed me once again. Living with this awkward condition and trying to find a cure is like looking for the miracle. It’s human nature, after eleven years living with this condition, to only be asking God for a cure and to help me. I am always reminded by the doctors that anterocollis was one of the hardest to cure or treat.
For my third month appointment Dr. Okun could see I was in a depressed state and he asked me what was going on. I expressed, “I feel like I went through the process of this surgery for nothing.” Dr. Okun said lets review something. “You are no longer on pain medication or Botox injections which were performed on you every three months for the last ten years and you are able to look to the right side of me which was once impossible for you to do at all.” My eyes swelled with tears as I listened to him give me an attitude adjustment that I so truly needed. I looked at him and said, “I never thought of it in that perspective.” I was so fixated that my head would just stand at attention like everyone else’s. He then said lets put you in some physical therapy. He told me that he would set me up with an evaluation to be done at the hospital with Keith who specialized with movement disorders. I met with Keith that day. He was able to work me in due to our long commute. Together, he and I figured out a treatment plan that just might strengthen the muscles that have not been used in the past eleven years. I started all the exercises to rebuild the strength in my neck right away. I was then sent to Adam located in Jacksonville where I live. This was great for me because the office was right on my way home from work and Adam had the same background as Keith about movement disorders. They were friends who studied under doctor Okun. I felt confident in the way they both handled me. They understood the disorder. I could tell in the expertise of how different they treated me than any other physical therapists I had gone to in the past. My stubbornness and character let them know I was serious about my therapy. This helped inspire both of us to work hard to reach my goal. I had worked with Adam for about a month, twice a week, and then two more times at home everyday on my own. I could tell I had some tired muscles due to the soreness I was feeling. That just meant I was doing the exercises right. It was time to go back and see Dr. Okun; I was so excited to be turned up.
I could feel the stimulator was not adjusted to where my strength capability was at. So, I went back to Gainesville to see the doctor, and when I got there, Elaine Whidden, who is my programmer, said, “Pam, today is the day we’re going to turn your machine off”. “Why?” “Well, she said, “Today marks the sixth month of your stimulator being turned on. This means its time to tape you on and then off so we can tell if there are any improvements.” I was not ready to hear that especially since I worked so hard with therapy. I was kind of ready to show off. I thought of this process and I have to admit it was scary to me, only for the reason being that this may conclude the surgery did not work. As I gathered my biggest fears I said OK let’s do it We started with all the normal neurological procedures, push and pull on the feet and hands, finger to my nose, walking back and forth, pushing to see if I could keep my balance, sitting in a chair doing toe taps, and, finally my favorite one, sticking out my tongue. Not! Reading a passage about a rainbow, drinking out of a cup five times in a row, writing a sentence five times in a row, drawing a spiral, and looking in every direction, up, down, and side to side. Last, but not least, seeing my posture when I sat forward in a chair. Now they were done taping and said let’s shut your system down for fifteen to twenty minutes, and we’ll tape again.
Now I was shut off completely and it was the worst feeling; all of my stiffness in all parts of my body was coming back. Swallowing became hard for me once again; my neck pulled down and over to my left shoulder and held me in a fixed position. The spine was out of proper alignment and hurting like heck. My left side had barely the feeling it had being turned on. My husband and I sat in shock of what we were looking at. I could no longer turn my head to look to my right, and the pain was becoming unbearable. I stood up and went to look in the mirror and saw a pitiful person standing there. I then looked at my husband and said, “What do you think about what you’re seeing?” His exact words were, “It hurts me to see you this way again.” WE JUST DID NOT REALIZE THE STIMULATOR HAD HELPED THAT MUCH. I couldn’t hold my head up on my own. I was not the same person I was from the time when I walked into the office that morning to what I was looking at in the mirror. My husband and I both thought this was a great wake up call for us because now we really knew the progress the surgery had allowed me to have. We now could see with our own eyes how devastating I did look, six months ago. I told my husband to go and find Elaine because she said the stimulator would only be off for twenty minutes and it was now an hour. I needed to be re-taped so I could be turned back on and get out of my interrupted state. I felt so awkward when all the same tests were repeated. I realized just how much control I lost when they turned my stimulator off. Words were unclear, my balance was off, strength was no longer there and swallowing was taken for granted. Holding my pen trying to write or draw was another problem. To perform everything I had done an hour ago was no longer an easy task. It was my worst nightmare. Now I was curious to see the video. I don’t know why I already could tell the difference, but curiosity can get the best of you and I needed to see with my own eyes how the devastation looked to me. Watching this process was hard on me because the entire video proved to me that I was still not one hundred percent. However, according to what I just saw and felt, I was in much better shape with the stimulator turned on. I said to Elaine, “now you know just how bad I once looked.” Elaine was new to my case and she had never seen me before I had the surgery. I told her with care and understanding, now do you see why you and I clashed? Elaine and I had been clashing because she was used to programming Parkinson patients. She was a very nice lady; she just had no understanding of how different Dystonia was to treat. We hugged as we said good-bye and she told me that she was so sorry for making me feel frustrated.
Today, I felt like a lesson was learned for both of us. We both have seen a major improvement with this Deep Brain Surgery. I walked out of that hospital on my 44th birthday glad I did the surgery, and thankful to all involved in the helping in this process. I made a new promise to myself which was not to complain ever again and to be thankful for where I am in this process and to believe the doctors when they say this may and will take time to work to its full extent. In time you will see the difference. I believe that now! I was just given the best birthday gift I could possibly receive. Let’s just say my drive home this time was the happiest I have been in six months of going there. Happy Birthday Pam!

Pamela Garritano

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