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Santa Rosa man is a prisoner of his own body

Wednesday, July 3rd, 2013 | Posted by

John Meltzer, who suffers from Dystonia, a neurological movement disorder, and his mother, Clare Venet, at their home in Santa Rosa. (Beth Schlanker / The Press Democrat)

By ASA HESS-MATSUMOTO / Santa Rosa Correspondent

“I wouldn’t wish this on my worst enemy,” said John Meltzer between gasps and sobs on his living room floor. “It’s like slow death. I have no control over my body.”

For the last several years, Meltzer’s days begin and end in a constant struggle with his “personal hell.” The tardive dystonia – a progressive, permanent neuro-muscular disorder that induces constant, involuntary, and occasionally painful movements throughout the body – has claimed much of Meltzer’s limb motions, including wrenching his neck persistently to the right and repeatedly inducing cramps in his legs.

When he moves, it is less of a walk and more of a stagger, haphazardly stumbling in short bursts from one part of the floor to the next. The tear stains on Meltzer’s pillow are an agonizing record of what little he is capable of accomplishing on his own anymore.

“It’s hard,” Meltzer said. “I just don’t want this to be the rest of my life.”

Before the onset of the dystonia, Meltzer had made a life for himself as a poet and screenwriter. Having picked up a national poetry award in his senior year at Maria Carillo and graduated from New York University’s school of the arts, Meltzer had moved to Santa Monica to work on writing screenplays.

During his time in school, Meltzer had been taking risperdal – a prescribed anti-psychotic medication – to help offset his obsessive compulsive disorder. After four years of taking the drug, the earliest effects of Meltzer’s dystonia began to surface, beginning with uncontrollable blinking of his eyes.

It’s rare, but it happens. Several instances of drug-induced dystonia and dyskinesis (a similar neuro-muscular disorder) have been reported as consequential side-effects of risperdal. In the last six years, over 400 lawsuits have been filed against the largest commercial producers of risperdal, the subsidiary pharmaceutical companies of Johnson & Johnson, for downplaying and concealing the side-effects of the drug. Johnson & Johnson has paid hundreds of millions of dollars in settlements and court losses for promoting off-label treatments for the drug, including anxiety disorders such as Meltzer’s obsessive compulsive disorder.

For Meltzer’s mother, Clare Venet, 65, the hardest part of Meltzer’s condition for her is the sense of helplessness. Her son’s condition has put a lot of strain on the 20-year yoga instructor and single mother who has provided spiritual healing and counsel to her students.

“This is something I can’t do,” Venet said clutching reams of Meltzer’s poetry. “I mean, I can help my son: I can pray for him, love him, feed him, and do all these things – but I’m otherwise completely powerless. Which is a big kind of surrender.”

While there is no known cure for dystonia, a number of experimental and clinical operations do exist. In December 2012, Meltzer underwent a procedure to attach electrical nodes along parts of his brain to assist in “re-mapping” his limb functions. The operation was an apparent success: in the months that followed, Meltzer could sit on the couch, then walk around the block, and then began to re-apply for his driver’s license. Meltzer even completed his eleventh screenplay, a comedy he dictated to a friend while they transcribed it to paper.

The good news was short-lived, however, as Meltzer’s doctors discovered a life-threatening infection had made its way to his brain through the newly installed hardware. The electrical nodes, along with all of Meltzer’s progress, had to be taken back.

“The last setback was really hard for us,” Venet said. “Now we’re back to not even square one. The task at hand is getting rid of the infection. It was a big shock and we’re both kind of stunned.”

The positive gains that were made from the initial surgery show signs that an eventual recovery of sorts may be possible. But the road so far has proven taxing on Meltzer and Venet both.

“It’s not everyday you go and have brain surgery,” Venet said. “You’ve got to seriously get yourself physically, mentally, emotionally, and spiritually aligned for that. My focus is to get my son better and to not get into complete debt in trying to do it.”

Moved by the family’s situation, Linda Woodside, 64, a longtime friend and yoga student of Venet’s, began raising funds to support Meltzer’s surgeries and living arrangements. Since the two weeks its been open, the fundraiser page online has collected nearly $11,000, with most of the donators being present or former yoga students of Venet’s.

“[Venet] has a huge following of people who have practiced with her,” Woodside said. “What’s happened to John has resonated with the community – they really feel it. She has given a great deal to this community and, for the last several years, she’s done that while caring for him.”

For a disorder as obscure and unusual as dystonia, the widespread support Meltzer and Venet have found in the local community has been a welcome source of comfort.

“Everyday people are donating,” Woodside said. “It’s just a symbol of the support that’s out there. It’s a little tiny slice of brightness to know that there are people out there thinking about them – that they are not alone.”

To follow Meltzer’s progress or to make a contribution, visit rally.org/johnandclare.

  • Dan

    In the last six years, over 400 lawsuits have been filed against the largest commercial producers of risperdal, the subsidiary pharmaceutical companies of Johnson & Johnson, for downplaying and concealing the side-effects of the drug. Johnson & Johnson has paid hundreds of millions of dollars in settlements and court losses for promoting off-label treatments for the drug, including anxiety disorders such as Meltzer’s obsessive compulsive disorder.

    THE FDA IS A SCAM FOR CORPORATIONS… not unlike the SEC that allows Wall Street to fleece American, and the FTC allows for the anti-American monopolies like pharma, telecom, etc.

  • Michele Weber

    Keep fighting! We have a group of 700 dystoniacs on Facebook for support, search FB for Neuronauts. Other folks with DBS and life challenges of dystonia. We live it with you! No sense in having this adventure on your own. All best to you.

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Ann Hutchinson is our Santa Rosa correspondent.
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