Joy Each Moment

I recently read "Peace Is Every Step: The Path of Mindfulness in Everyday Life" by Thich Nhat Hanh. The book is a simple look at how to find joy in each moment, task or encounter. I have been diligently trying to apply these types of Buddhist ideals to my daily life. It is not as easy as I sometimes wish, particularly after reading a book such as this one which makes it seem so simple. However, I am finding that if I make a conscious effort each day to practice mindfulness it really is possible to find joy in the small things and emanate enhanced awareness and peacefulness. I have slowly been learning how to do this over the years, but it is always good to read about others experiences of this type of living.

My interest in living a more mindful life began when dystonia became a part of my life in 1995. Because I aquired dystonia, I began understanding that all people have their own history and experiences that make them who they are. I also began to realize that each experience changes the person who lives the experience. We are all constantly changing and growing. This is the impermanent nature of life. It is important to try to understand the lives and experiences of those around us because this is how we can find peace within ourselves and others. Dystonia has also provided me with an appreciation for the small things. When I lost my ability to walk and talk and move when I had those first dystonic reactions in the hospital and later with many dystonic attacks or storms, I realized that I really appreciated having those previous abilities...being able to sit in a classroom and take notes, read, write and participate in life. In order to deal with my losses I had to start appreciating each little ability that I did have. I also knew that I still had my mind, knowledge and ability to learn. This is how I was able to begin living and enjoying life again. It helps to remind myself now and again about the joys I have, to find joy in those around me and to work on finding peace in every step.

Back on Baclofen

Dystonia has been slowly worsening since I gave birth to my son one and a half years ago. It was much improved during my pregnancy and I believe it has just been getting back to the same state as before I got pregnant. Needless to say, since I haven't been on medications for over two years my symptoms have been gradually becoming intolerable. The pulling on my neck that tilts my head to the right, head tremors, spasms in my lower back causing sciatic nerve pain, curling toes on my left foot, twisting of my left hip and cramps in my arms and hands, all my daily reminders of dystonia have been getting worse. I went back to my primary care physician and received a prescription for Baclofen.

Baclofen is a GABAB receptor agonist that works at the spinal level and crosses the blood brain barrier to affect the brain. Dystonia results from dysfunction in circuitry of the basal ganglia, a group of sub-cortical brain structures that are responsible for regulating motor control. The basal ganglia are also regulate cognitive, emotional and motivational information and integrate these processes with motor output to produce appropriate actions. Many of the nerve projections from various structures of basal ganglia use gamma-aminobutyric acid (GABA), the major inhibitory neurotransmitter. http://en.wikipedia.org/wiki/GABA Baclofen acts like GABA, increasing activity of the GABAB receptor to enhance inhibitory activity on target structures throughout the brain. It is one of the only drugs that I have taken for dystonia that significantly improves my symptoms without causing intolerable side effects.

So, I am back on the Baclofen and hoping that I can tolerate it as I have in the past. I will have to increase the dose over time to continue getting effective reduction in dystonic symptoms, but since I have been off of it for so long, I think it will take a while to build up tolerance again. Before I got pregnant I was taking 80mg/day which is a pretty high doseage. Right now I am starting at 10mg/day and will work up to 30mg/day over a month or so and then maintain that as long as I can before I build up a tolerance. I hate taking medications as I fear that they are damaging my brain in some way, just as the neuroleptics caused my dystonia. Baclofen also has some cognitive side effects and causes fatigue which makes graduate school a bit more challenging than it already is. However, when you live every day with dystonia, you know that it can make life difficult to live at all. Medications are a compromise I have to choose in order to live a functional, productive life with dystonia. These are not easy choices to make, but hopefully will help alleviate some suffering so that I can better contribute what I have to offer to the world.

The picture is of my son (16 months old) contemplating the beauty and wonder of jellyfish at the Georgia Aquarium in Atlanta http://www.georgiaaquarium.org/ The photo was taken by my husband while I was at the Society for Neuroscience (SFN) annual meeting.