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.

• Embattled Survivors at the Piano: Two of America's finest pianists recount how hand injuries plagued their performance and altered their careers
• Pioneering surgery helps boy, 4, smile again: A four-year-old boy with a severe muscle control disability has been given the ability to smile again thanks to pioneering brain surgery.
• iPhone app gives a voice to the voiceless
• A life resumed: Surgery rids woman of longtime tremors
• 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.