A Bridgeport woman is speaking publicly for the first time about her journey with Parkinson's and the lack of coverage she says she's getting from insurance.

Wendy Tones, 49, says there is something desperately wrong with a health care system that won't pay for home care coverage for somebody in her condition.

Tones was diagnosed with Parkinson's two years ago. Since then, the degenerative central nervous system disorder has taken over her life, leaving her barely able to walk or care for herself.

Tones says she is writing a book so she can build awareness about Parkinson's while she still has her strength.

"I stay strong because I know I have a purpose with this Parkinson's, I have to put it out there that Parkinson's is more than a shaking disease. It's so much more and people don't understand," Tones says.

Tones has Medicare coverage, but says it will not pay for the long-term home care she needs to stay out of a nursing home. Sooner or later, she says, she will end up in a life-threatening situation while trying to live independently and save taxpayers the millions of dollars nursing home care would cost them.

She says she knows of a perfect aid willing to care for her, but there's just no funding.

Sen. Richard Blumenthal says lawmakers need to change Medicare so Wendy and other people with degenerative disorders can receive long-term home-care benefits to help preserve their independence.

"Wendy Tones has been fighting Parkinson's, we should be fighting for Wendy Tones so she can get coverage for the home care she needs," he said.

In the meantime, Tones says she's hoping and praying for some kind of guidance so she can feel more sure-footed on the road ahead of her.

"I need an advocate to help me because I can't advocate for myself sometimes, because sometimes I can't even talk or get my words out," she says.

Blumenthal says he'll be seeking bipartisan support for what he calls a "common-sense, cost-effective" change in the Medicare program.