New Media Producer: Brad Maglinger
The man of the hour at a celebratory luncheon used to suffer tremendous pain with a condition called generalized dystonia that caused his body to jerk violently. In August, that all changed for Sam Fischer Jr. at a hospital in Philadelphia where two pacemakers were implanted in his chest. When they sense too many impulses, they send out tiny jolts of electricity to block the misfirings of the brain.
It's a last resort surgery that the other members of the dystonia support group aren't sick enough to get. For many, the spasms and abnormal postures are confined to the neck area, a condition called spasmodic torticollis.
"I'd walk around work with my hands on my head like this holding it," says Denise Potter. "To talk to somebody, my whole body would do this because I couldn't move my head."
Relief came in the form of botulinum toxin or Botox. It temporarily paralyzes the muscles and keeps them from shaking or locking up. It's the same treatment now used for cosmetic purposes, usually to minimize wrinkles in the forehead.
"It makes me mad," Denny Ferrin says. "Why should they have something that would probably take care of my situation just to beautify themselves?"
Ferrin isn't a big fan of people who use Botox for cosmetic reasons. He's afraid if it's used too much for what he considers trivial purposes, there won't be enough for the people who really need it.
Patient Jerome Vowels has other concerns. "I don't like the idea of doing that because it raises the price for the rest of us," he says. "When they use it for cosmetic purposes, it seems like the price goes up."
But both Henderson neurologist Michael Mayron and a spokesperson for the drug maker Allergan say those fears are unfounded. They say the price of Botox has gone up, but cite inflation as the primary reason. And they say there is no danger of the drug running out. That's good news for the members of the group. Until a treatment is available for them that works as well as Sam Fischer's has, Botox is something they can't live without.
For more information, go to Dystonia, Inc. at www.spasmodictorticollis.org or call 1-888-445-4588.
For information on how to provide financial help to the Sam Fischer, Jr. family, send emails to: Hope4SamJr@aol.com.
For more information on Botox, visit the company's website at www.allergan.com.