Knoxville woman with epilepsy loses Social Security disability, Medicare

Amy Schnelle says she's caught in a 'catch 22'

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KNOXVILLE (WATE) – A young disabled Knoxville woman has lost her Social Security disability and Medicare assistance. She has epilepsy and until a year ago, had uncontrollable seizures.

Epilepsy is a chronic disorder and if not treated properly, can result in unprovoked seizures. The disorder can be so debilitating that people can’t work and depend on medication to control the seizures. What happens if an epileptic can no longer get his or her medication?

Amy Schnelle
Amy Schnelle

Every week, Amy Schnelle and her mother Sylvia set up medications that Amy Schnelle depends on to have a normal life. Amy Schnelle is an epileptic. For nearly half her life she suffered severe seizures. Unable to work, she started receiving Social Security disability and Medicare six years ago.

“It’s been awesome. I get a taste of being independent, get to walk around without someone getting worried. I haven’t been able to do that for 15 years,” she said.

At one time, Amy Schnelle held down a full time job as a factory worker, but had to quit because of the frequent seizures.

“I bite my tongue. There were times where I bumped my head. It would take me hours to come back,” she said.

“These are the grand mal seizures where she’ll jerk her head and have blood or foam coming out of her mouth,” said her mother Sylvia Schnelle.

Over the last 15 months, Amy Schnelle’s mom says her daughter’s health improved dramatically with the help of anti-seizure medications. Now, however, Amy Schnelle’s Medicare is ending and she can’t afford to buy the pills. Everything changed when Social Security sent a letter in May of this year saying her $1,200 a month check would be ending.

Over the last 15 months, Amy Schnelle's mom says her daughter's health improved dramatically with the help of anti-seizure medications.
Over the last 15 months, Amy Schnelle’s mom says her daughter’s health improved dramatically with the help of anti-seizure medications.

“We’ve decided that your health has improved. Now you’re able to work, this means your benefits will stop,” read Amy Schnelle. “I was terrified.”

“What are they talking about? She can’t work,” said Sylvia Schnelle.

Social Security says she’s able to go back to work, but without the medication, she can’t work.

“it’s a catch-22,” said Amy Schnelle.

She went to the local Social Security office in Knoxville to file an appeal, which is now under consideration.

The letter from Social Security also states: “Although you may have a seizure disorder, the evidence shows your condition can be controlled with medication,” and, “although you may experience dizziness at times, there is no indication that this seriously restricts her activities.”

The Schnelles say what Social Security didn’t take into account is once her disability was dropped, she no longer can get the medications needed to control her condition. Amy Schnelle fears once off the pills she’ll relapse and will have seizures again. Nevertheless, she says she’ll continue going to Social Security’s office.

“The doctors have been understanding. I’m hoping that the government will be just as understanding. I don’t want to have a seizure in front of them in order for them to understand,” she said.

Amy Schnelle says her doctors told her those four anti-seizure medications are imperative for her health and the manufacturer of one of them said they would continue to send her the medication free of charge because they know she needs it.

Social Security appeal cases take a lot of time, but time is of the essence if Amy Schnelle is to remain seizure-free.

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