text: Encephalitis Survivors: Lonely Battles to Reclaim Lives - Health News - ABC News Radio
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  Comstock/Thinkstock(BOSTON) -- Becky Dennis delivered one of her best presentations while on a 2008 business trip to India. But within two hours of giving her talk, she couldn't put together a sentence or move her legs.
  Back in the States, Dennis' health declined. She kept losing weight, couldn't taste or smell anything, and was sleeping all the time. She shuttled around to more than a dozen doctors over the next 30 months and was variously diagnosed with stress, a stroke and a complex migraine. Experts also told her that it was all in her head, she said in an interview Tuesday.
  Many encephalitis patients become depressed, dejected and struggle to pay bills while grappling with disorientation, memory loss, and trouble speaking and understanding others, according to a report entitled: "I'm Not the Me I Remember: Fighting Encephalitis," released this week in conjunction with Rare Disease Day 2012 on Wednesday. The report was compiled by Inspire, which provides online communities for a variety of illnesses, and Encephalitis Global Inc., a nonprofit patient advocacy group founded in 2004.
  Patients like Dennis, who survive the first month of acute illness, frequently fight new battles as they try to resume their daily lives. It's often a struggle, as they deal with residual effects of so-called acquired brain injury, such as those caused by a head injury, stroke, the cutoff of oxygen after cardiac arrest, inadvertent lead or mercury poisoning, or the effects of meningitis -- another form of brain inflammation, Deen said.
  Unfortunately for many patients with encephalitis, often doctors haven't seen many cases and don't know the telltale symptoms, and many patients may not find their way to the neurologists and other specialists who do.
  And encephalitis can be particularly difficult after it is diagnosed and treated since, after the initial acute illness passes, some patients are left looking normal but suffering from the silent ravages of the infection. Health insurers may deny longer-term rehabilitative care, including comprehensive speech, physical and occupational therapy that can improve recovery.
  The new report includes responses from an online survey completed by more than 250 members of the encephalitis support group, slightly more than half of whom were survivors; the rest were caregivers. More than half of the survey group patients said they suffered from lack of concentration; more than a third from speech and language deficits. Of the 150 survey respondents who were working before becoming sick, 43 percent did not return to work; 20 percent were working again but in less demanding jobs and eight percent reported losing a job because of poor performance.
  Dennis also says she is grateful for support from her online support group "family," and her real family: husband Gary, a golf pro, and her sister, Angela Martin. "It's great to have a therapist, but also nice to have somebody who knows you to the core."