Dystonia and TD Awareness

This week is dystonia awareness week. So far I have given away nearly 50 dystonia magnets from Care 4 Dystonia and several dystonia ribbons and pamphlets from the Dystonia Medical Research Foundation. I have also been sharing the film, "Twisted", with some of my friends. I am always curious as to why there are so many people who haven't heard of dystonia when there are nearly 500,000 people living with dystonia in North America alone. In addition, there are thousands of people living with tardive dyskinesia (TD) and drug-induced movement disorders that are not even included in this number. We need to continue to raise awareness.

Many people with chronic psychiatric disabilities or developemental disabilites develop tardive dyskinesia from neuroleptic medications. Have you ever observed a person with a disability who is pacing, rocking, making bizzare movements or faces? This is tardive dyskinesia. It is not because of the person's disability...it is a disabling movement disorder associated with the medications they have been prescribed. A friend of mine with TD started a great website for people with TD to meet, post and learn more about living with TD.

As for my TD/dystonia...I am lucky that it isn't severe dyskinesia like a lot of people with TD have and like I dealt with in the beginning. Dystonia has been treating me a bit better the last week or so. I am now up to 60 mg of baclofen per day. I also take ativan and naproxen. I am in the process of trying to find a better pain killer as naproxen has given me ulcers in the past and doesn't work very well for the severe pain in my left foot and my neck. My doc prescribed Ultram but I have decided not to use it because some of my friends with dystonia have had dystonic attacks associated with it. This is probably because it has antidepressant properties (norepinephrine reuptake inhibition). Antidepressants can also cause or worsen dystonia but typically are not as risky as the neuroleptics that directly block dopamine receptors. I have used Darvocet for dystonia pain in the past and I think I can probably tolerate it best compared to other opiates, like morphine, which leave me with severe cognitive problems, dizzy, vomiting and talking nonsense. Not good side effects for a Ph.D. candidate. I will head back to the doc in a month or so and I finally got an appointment with my neurologist albeit I have to wait until September. Crazy.

In the meantime life goes on. This weekend my little brother will be coming to visit. I miss him so much and can't wait to give him a big hug. He is an emergency room nurse and is a very busy guy. I don't get to see him enough. I will have to give him some dystonia awareness magnets to share with his nurse friends. We are looking forward to spending the weekend together.

The picture is of my favorite flowers...petunias. I took the picture after we planted them earlier this Spring.

Springtime Pleasures

I have always enjoyed the outdoors and Springtime is particularly pleasant. Dystonia has been hard on me lately. My left foot and hand are curling and cramping quite a bit and I have been feeling a bit frustrated that the Baclofen isn't working as well as I would like. It helps to have the nice weather. I love getting out of the house and walking in the wilderness or just sitting in the yard admiring the flowers. Today we enjoyed a picnic by the stream on campus. My son loves throwing sticks and rocks into the water. He would probably sit by the water throwing things for hours if we let him. His joys remind me to focus on the small pleasures of life and to try not to worry so much about dystonia and the demands of graduate school.

Climb On

Before I aquired dystonia I enjoyed rock climbing in the Tetons of Wyoming with my father and brother. I started climbing and learning technical rock climbing skills with my Dad when I was very young. At age 13 I started taking classes every summer at Exum Mountain Guides Climbing school in the Tetons. My father, brother and I summited the Grand Teton when I was 17 years old. It was one of my greatest accomplishments and taught me many skills that help me persevere when life throws me curve balls like dystonia. I will never forget standing on the top of that mountain and the years of work that it took for me to acomplish that feat.

Today I am feeling a bit better about my dissertation work and my struggles as a graduate student. I am just taking one day at a time...trying to focus on living in the moment and getting my work done a little bit at a time. This is hard when dystonia is running the show.

In the last several weeks and days dystonia seems to be grabbing at every bit of me. I have noticed that I am having more and more trouble manipulating equipment in the lab...particularly with my left hand. Typing is also getting more difficult with my left hand again and I am often finding that my fingers are curling and cramping with certain tasks. When I first acquired dystonia at age 19, my hands became so cramped that they were nearly impossible to use. I typed with one finger on each hand and had to be fed by my family and friends because I couldn't hold on to a spoon or fork. My dystonia improved a lot over the first few years that I was off of the medications that caused it...then it stabilized for the most part with some fluctuations from time to time. When I got pregnant it improved even more and I was thrilled. I had hoped that the improvements would remain after I had my son, but the dystonia has been slowly worsening since I had him. I'm not sure why...maybe it is just getting back to how it was before the pregnancy. There is research demonstrating that hormones like estrogen can have effects on movement disorders probably by modulating dopamine transmission in the basal ganglia. Sometimes I also wonder if I just have a genetic predisposition for dystonia and maybe I would have developed dystonia eventually even if I hadn't been exposed to the neuroleptic drugs.

I made an appointment with my doctor and I will ask about increasing the Baclofen. It is also possible that I may be just building up a tolerance to the Baclofen and will need to increase the dose to get the same improvements I was getting from it when I started back on it several months ago.

I am very fortunate to be able to be in graduate school and living my life so fully. I get frustrated when dystonia gets in my way, but it is good to remember how bad it was and be thankful for what I have now. I also find solace in remembering my climbs with my Dad and my brother. When climbing, it is important to talk to your climbing partner to assure them that you are there and to protect each other in case of a fall. Holding and controlling the rope to prevent your partner from falling is called belaying. When you begin to climb the belayer shouts "Belay on!" and you shout back to him "Climbing!" to which he replys "Climb On!". This way you know you are safe to climb because your partner is ready to help catch you if you should fall. Each day of fighting the cramping, pain and twisting of dystonia and getting through graduate school would not be possible for me without the support of my family and friends. They are all telling me that it is Ok to "Climb On" and they are here to support me when life gets tough...and so now I am "Climbing On" in the midst of the chaos of this crazy life.

The photo was taken by Alex Lowe, our guide, on the summit of the Grand Teton.

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.