J03: Metacomet meets Ataxia

Eight years ago, guitarist Jay Tyer was diagnosed with a rare degenerative neurological disease called Ataxia. Since that time, his life has drastically changed. He has lost his job and virtually all of his students. His driving is limited. His sleeping patterns are all messed up, and though he still plays the guitar, his approach and technique are radically different.

What remains constant in Tyer’s life is his family support, his attitude and sense of humor. He’s not looking for sympathy or attention. What he wants is for people to know that the disease exists. He wears a T-shirt that reads: “Ataxia is not a foreign cab.”

According to the National Ataxia Foundation, the word “ataxia,” comes from the Greek expression, “a taxis” meaning “without order or incoordination.” Here’s what their Website says about it: “People with ataxia have problems with coordination because parts of the nervous system that control movement and balance are affected. Ataxia may affect the fingers, hands, arms, legs, body, speech, and eye movements.

“The word ataxia is often used to describe a symptom of incoordination which can be associated with infections, injuries, other diseases, or degenerative changes in the central nervous system. Ataxia is also used to denote a group of specific degenerative diseases of the nervous system called the hereditary and sporadic ataxias which are the National Ataxia Foundation’s primary emphases.”

Tyer says sometime before the 21st century millennium change, he started noticing that his speech began to slur. At the time, he was a specialist who was consulting and teaching online classes in verilog, timing analysis and other advanced developments in electrical engineering. He is also a composer, author, and music teacher who had written many computer-based tutorials for jazz guitar and improvisation.

“It was like I was drunk and I don’t drink,” he says. “I went to a lot of doctors. Once it was determined to be neurological, I started checking things out on the Internet and found ataxia.”

Tyer says his symptoms fit his condition of the disease. Dr. Jeremy Schmahmann, a neurologist at Mass General Hospital in Boston, confirmed Tyer’s assumption, diagnosing him with Sporadic Ataxia.

Tyer says the disease affects his energy levels and motor skills. He can only sleep for a few hours at time. He can’t really write with a pen and his walk is a pronounced gait. The slurred speech is the most noticeable.

“I could never pass a drunk driving test,” he says. “I have a letter from my doctor that says ‘this guy is not drunk.’”

Tyer is well-known in the Worcester jazz community. For more than 15 years he has been hosting a free jam session at various clubs throughout the city. Currently, he is in residence at the Java Hut. During the winter, Tyer and his trio play but once a month. Come April, the session will happen every Sunday from 2:30-5:30 p.m. Learn more at: www.jaytyer.com.

For years, Tyer played solo with invited guests every Wednesday at the Sahara Restaurant on Highland Street. He has one CD to his credit, Metacomet an outstanding showcase of originals by Tyer and his quartet, featuring saxophonist Jim Allard, bassist Phil Madison and drummer Ed Conley. Check it out at: cdbaby.com/cd/jaytyer.

“My ataxia has effected my playing, but I fight it,” he says. “I use Tom Harrell, Stephen Hawkings, and Django [Rheinhardt] as inspirations. Ataxia is not symmetrical. My right side is different from my left.”

Tyer is married and lives with his family in Jefferson. He and his wife Erica have two daughters. Erin, who was born with brain damage, is six. Brianna, an acoustic bassist who will be accompanying dad at the jam, is 15. Erica is a stay at home mom, who in addition to caring for the family, is also working on becoming a published author.

Tyer says what frustrates him most is the fact that he can’t work. “I collect social security and it’s what we are living on now,” he says. “We are living on an eighth of what I used to make. It’s tough.”

Like Metacomet, the character he named his album after, Tyer is a fighter. (Metacomet, who was also known as King Philip, was a Sachem Indian war chief that fought with the English in the late 1600s in what was to become known as King Philip’s War. He used Mt. Wachusett as a base of operations for most of the conflict.)

When asked where he finds the strength to carry on – Is it religion? he laughs and says, “I meditate. My daughter calls me a non-practicing Buddhist. I’m actually a recovering Catholic. I went to St. Paul’s where I was an alter boy.” (Tyer grew up in Worcester in the Highland Street neighborhood.)

Evidently, there’s not much in the way of treatment for ataxia. Tyer takes a concentrated vitamin supplement. “I could benefit from stem cell research,” he says. “Ataxia is progressive. “Many people with ataxia wind up in wheelchairs. Mine is moving slowly. Still there are so many things I used to do that I can’t.”

Through it all, Tyer maintains his warrior spirit. “Folks who have disabilities don’t have to stop living,” he says. “There are many more worse off than me. You play the cards you are dealt.”

For more on ataxia go to: http://www.ataxia.org/.

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