Atlanta Carrick Brain Center, June 23-29, 2014 “Walking on Blessed Ground” “I have dystonia,” she said “but I can control it. In the past I’ve been diagnosed with lyme disease. I still can get pretty tired.” She and her mother were dressed in floor length purple dresses with tiny pale yellow flowers, and wore the white head coverings common to their Georgian and Pennsylvania Mennonite culture. As she spoke the bobbie pin holding her head covering in place jerked occasionally, ever so slightly to the right. Her arms were held just a bit to tightly against her sides, hands clasped in her lap, relaxed but white knuckled. There was an almost impreceptible facial twitch as she spoke calmly through a gentle smile, and a tension in the way she held her body still that was uncomfortable to see. Now 33 years old, she had taken a leave from teaching at her local church school to try and find a way out of what was becoming of her body, and what it was doing to her life. “At some point does this cross over to the other side” she asked, looking at her hands as if to decide which wanted to move more, and how, if she let them go, either moving hand could hold the other still any longer. “Yes. It will progress” was the answer as Doctor Carrick began the exam by taking is opthalmoscope and looking into her eye. “I can see that you have down beating nystagmus. We see that with problems in the fastigial nucleus, which is a part of your cerebellum. From there information fires up to your eyes and causes you to have this down beating nystagmus, and some fires into a place called the area acoustica, and then down to your spinal structures, and it makes you want to move. “I can control it” she said. “I can.” “You’re camouflaging it pretty well but that takes a whole lot of effort, and that can make you pretty tired, maybe as much as that lyme disease you mentioned.” “What you also have is a tic disorder,” he said not too much further into the exam, “a variant called tourettes syndrome. Your left subthalamic nucleus is supposed to excites your nigra and that’s supposed to inhibit another area so that your body isn’t jumping around when you don’t want it to. That’s broken and it doesn’t do it’s job. There are often associated limbic things with this, and perseveration. Any OCD behaviors, like did you play with you hair a lot as a child?” “I deal with that a lot, and for a very long time. I picked at myself as a child” “Any depression? She took a moment to long to think about what she would say next. “I am a Christian. Every day I make choices. If I let it go I wouldn’t be as up, and I am an up person. I make choices every day with God, to control things.” “You know, there is strong support in the scientific literature that relates midline cerebellar structures like the fastigial nucleus to midline limbic structures above, and some emotional involvement would be considered pretty normal, maybe some depression, in people who have the things we’ve been finding here.” “May I ask”, she said, hesitating. “People with OCD struggle with… Is it my fault? Can I help it? Did I…” “No. It is not your fault.” He said as someone passed her a tissue to wipe the tears that began to flow from her eyes. “I’m always trying to be normal. Is it…” “It’s a physiological lesion. It’s real. It is not something you made up in your head, and you didnt do anything wrong.” “I’m learning it’s a bigger deal than I thought. I would have loved to have seen you 10 years ago” “I would love to have seen you too.” “Someone told me that the brain is like mud in a way. The way you let it go can lead to a rut. Did I make a rut?” she said as her tears flowed freely now. “God wouldn’t have given you a brain full of mud. He gave you a brain more like a rose. Maybe there are a few thorns, but we have ways to address those. Let’s take care of your rose. Your going to need it to serve, to move forward with your teaching, to do the things that will bring joy to your life, and allow you to get back to helping others. Let’s get started. I want to do things to defeat this nystagmus and that should give you some pep, and we’ll do some things to see if we can address what’s causing that tic.” The treatment plan consisted of specific, individualized variations of chair rotation, yes-yes activities, opk, ssep, and left brain exercises, driven by her exam findings. “How long do I have you here?” he asked. “How long would you like me to stay?” she smiled. It was three days before I saw her again, at her exit review, this time wearing a bright lime colored gown. Her, not me. The first thing I noticed was that she was laughing openly, freely, Tense control was no longer her go to posture. Her mood had lifted. There was energy in her voice. Her movements were so much more at ease, aflmost natural seeming. “May we bring my father? He has this too, and he is beginning to forget things.” she asked. Follow-up testing revealed that her OPK and pursuit tracings were stabilizing. There was a growing number of left saccades, and saccadic latency scores were shifting toward a more normal speed, Profesor Carrick turned to her and smiled…”Do you hear the Angels singing?” Smiling back gently she replied “We Bless God.” Her Mother, calm, direct, straight forward, spoke next. “We have been feeling, as we walk around your clinic, that we are walking on Blessed Ground.” “Every day” Dr. C replied. “Every day.” It is this phrase that has stayed with me these three days since returning from Atlanta to Brooklyn. Walking on Blessed Ground. If she hadn’t said it my favorite Phrases of The Week might have been “How goes the battle?” which Professor Carrick said on greeting a hulk of a man who returned again for treatment from the British Isles, a former member of the Foreign Legion who was struck down by I think meningitis while fighting in Africa. He has learned to walk and talk again during multiple visits to The Atlanta CBC, and is beginning to look again like the guy I want covering my back the next time I pick a fight I can’t possibly win. If not for Walking on Blessed Ground the Phrase of The Week might have been “Better than meatloaf at The Cheese Cake Factory”, which Dr. Carrick said in celebration as a returning patient, a medical doctor at the local hospital and community theatre participant, sang a Broadway song in full stage voice with words she had rewritten to describe the confidence and life she had regained with the help of everyone at CBC. Six months ago her incredibly involved presentation had included the inability to audibly speak. I think when our Mennonite Mother chose her words they were a reflection of the love and passion and effort that was so apparent in the actions of the 40 visiting doctors who left everything they know at home and came to Atlanta to learn and to serve. It was also apparent in the efforts and love shown by the many students who came and stayed long hours all week, providing expert services in areas they are much more proficient in than I can ever image being. Among them were Brian Sass, Chris Sass, and Andrew Funk, who all dove head first into the fire and made every thing they touched better. More Young Guns bringing all of themselves to the moment is a beautiful thing to see. Among the visitors were doctors from The NHL, nine Psychiatrists, and one of the leading Nephrologists in the world. Many stood wide eyed watching not only the clinical application of science, but also the love, connection, and hope that people carry with them to each interaction. It is not possible to see the 70+ patients that Professor Carrick attended and that so many came together to assist without feeling the blessing. The ability to walk, talk, think and see are just a few of the absolutely miraculous abilities so often taken for granted. Before I stop, there are two who especially were moving to me. Many of us, I among you, were raised with siblings who brought us special gifts and had special needs. Some are raising their own little ones who bring such gifts and challenges. Many have worked in previous careers providing for those who are not gifted with easy, who live outside the box, who have a different race to run. There was a gorgeous little curly headed blond boy who came in running frantically around the room. He would stop, tip his head, and spin in circles to the right. He held his right hand to his right eye, shaking it non-stop an inch before him. His mother was concerned that at age 5 he was cut off from the world, inattentive to things outside of his bubble. In a previous career I have seen hundreds of children over twenty years doing the exact same things. Stimming they called it, and who knew why. His records indicated that his right eye was esophoric, and on observation/exam the esophoria proved to be alternating. It is all in how you see it and what you decide to do about it. Instead of stimming, Dr. Carrick saw a stereotypy, spoke of self activation of the vestibular system through spinning, and eyes that had lost conjugacy leading to double vision and a possible reason to wave a hand constantly in front of a misaligned eye. It cut him off from the world around him, but blocking his eye eliminated the double vision and created a world that made more sense. Development of the treatment plan proceeded with that in mind, and with admonitions not to offer false hope, but to make a plan and to see. I’m betting it works, but even if it doesn’t it was the first time in 20 years I’ve seen anyone think anything about it at all. The other was a young boy, a pre-teen with a reasonably large father who was on the verge of a growth spurt. He had no hearing and a diagnosis of autism, and wore a blue hooded sweatshirt, hood up and over his face. He seemed to prefer laying on the exam table isolating himself with his hoodie. When he got up to walk I remembered Dr. Carricks description of walking as a series of controlled falls. This soon to be growing boy’s falls were not so controlled. He lurched and fell forward and to the side a bit, as if he was trying to catch up with his center of pressure, which was way out of control and anterior to his base of support. Again, in a past career I have seen hundreds of people with special needs with gaits in the same ballpark. As they age it often gets worse, and their lives are spent largely in their rooms, with gaits no longer able to carry them even to the toilet, to the shower, to the breakfast table, to the van that would take them out of their home to a day activity program, or to Burger King, to WalMart, to the movies, to anyplace but in their room. When they can still walk, or rather fall forward and race to catch their center of pressure before they fall, they are often to large for hired assistants to support them, and their opportunities to get out of their rooms and live life become limited. Eventually they fall and break something or cut themselves against the many edges in every room. The circle of life can so easily become the size of ones bedroom. Walking is a miracle, and a functional gait is a literal vehicle to the universe. Among the things Dr. Carrick decided to do while examining him was to try and make sure that didn’t happen to our growing boy under the blue hoodie. I think a CAPs and a gait evaluation were done, much as we have learned during the most recent TBI presentations, and a treatment plan implemented that included spinning him anteriorly in the OVAR chair to assist in positioning his center of pressure more posteriorly. Off he went, falling toward the door, his feet racing to catch up with his body, his father guarding against his crashing into the door. I lost contact with his progress until the final day. At his exit review it wasn’t as if he still doesn’t have some issues to deal with, but being at risk of falling down every second, every step, was no longer one of them. Later Saturday, on the way out the door for the last time on this trip to The Atlanta Carrick Brain Center, I felt the effects that standing all week had on my legs. Sore legs, but full brain and happy heart. What a blessing just to be able to walk. As I turned for one last look, around the corner came our growing boy in the blue hoodie, hood down, standing erect, or erect enough to walk to the bathroom, to the kitchen to eat, to the van to WalMart, to anywhere but in his room. In the big Olympic game called life he has a different race to run, but at least now he is in it. As the door closed behind me, it may just be me, but I think I heard the Angels singing. Like
Posted on: Tue, 01 Jul 2014 08:21:46 +0000