Staying on Schedule

There were a few days after going back on Baclofen where my symptoms went away entirely. Incredible that it dropped off without me not realizing it. Definitely a great sign. I feel better about it now than when I last posted, mainly because the rapid increase in symptoms mirrored my first onset of dystonia. That time, it took me nearly 2 years to function again.

I'm terrible at taking vitamins, antihistamines, anything regularly. When I do remember, it's at a different hour of the day, sometimes the end of the work day.

I've been a little bit out of whack lately: waking up in the middle of the night, mood swings, asthma attacks, some feeling of anxiety on trivial things. I thought it was something I was eating but today I realized that it could be the drugs and looked it up. The drugs have been found to treat alcoholism and tend to have withdrawal symptoms.. sooo, I need to be better about not forgetting.

Thanks to those of you who've sent me private notes or looked me in the eye to ask me about what's going on. I don't want it to seem like I'm crying for help, or asking for credit. I feel like I've been blessed to not have something terminal and I've been given chances to live and operate without restriction again. There are people less fortunate (some with dystonia) than I. Talking about it, writing about it, explaining it makes me feel like I have a degree of control and sharing makes it seem less like I was alone. This time around, I waited a week before telling my new boss. I think overall, I'm just getting more comfortable about it.

Hello!

I'm here. It's January, 2011. So much has changed. I'm 32.

Grandmother passed away over a year ago. Kevan has a little sister. I have a job, a love, my dog, and a life. I am well.

It is too simple to assume that once you are ill and well again, that it ever completely leaves you back the way before it came. And these past few weeks I've been reminded of those few weeks in the beginning where I descended quickly from knowing myself as working man into a dependent cripple.

I feel like things are sliding quickly again. It is, or rather I am, moving again. The instinct is to tell my body, "wait! I'm not ready yet." But no one ever said you could control anything by just your words.

Since I started working again, I have had to see a variety of different urgent care doctors, optometrists, physical therapists for a variety of regular ailments. When they ask me to list known conditions, I always explain the disease. A few of them nod and tell me, "oh yes, I know what that is". And when they do, I don't look for another specialist again.

Before grandmother passed away from Alzheimer's disease the doctors also diagnosed her with Parkinson's disease.

Awhile ago, my sister told me that she saw a man in the grocery store. He was struggling to pull a carton of milk off the shelf. He was twisted. My sister walked up to him, reached up and handed him the carton and said "my brother has dystonia". He smiled and they parted ways. How that made me feel happy that someone was able to tell him "I know what you're going through."

When I first understood what it was and read about treatments, my heart jumped at the thought of undergoing brain surgery. I thought it was my last and final bastion of hope and wanted to skip all of the drug and physical therapy and have them disable the part of my malfunctioning brain. I'm not there anymore, I'm a little bit wiser, but I remember when all I could think of was surgery or death.

I have an appointment tomorrow. Fear returns, scenarios play, "goodbye letters" already spell themselves out as I sit here by myself. It's not that bad right now but moving quickly. Live your life, thank your God, give. Celebrate every breath of freedom.

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• Dancing with Dystonia
• Dystonia-parkinsonism: The mean age at onset is approximately 35 years, with 14 years the youngest reported age at onset.
• Lubag: X-linked dystonia-parkinsonism was first recognised in the Philippines and among the Panay Island families with the disorder. It is called by the Illonggo name “Lubag.” This name refers to when the twisting movements (dystonia) are intermittent, “wa’eg” when twisting postures are sustained, or “sud-sud” (an onomatopoetic term denoting the sound of sandal slapping the pavement) when the gait is shuffling (a feature of parkinsonism).
• Lubag Disease: This same source noted a prevalence of 0.36/100,000 basing on 268 survivors in a population of 74 million. This included a prevalence data for the entire island of Panay with the rate of 4.77/100,000. Among the five provinces in this island, Capiz has the highest prevalence at 21.94 cases/100,000. Lubag is said to be an endemic disease in Panay Island, especially in Capiz.21
• For Blake.