Woman uses illness for something good

Carol Meenen is advocate for those with Parkinson's

Carol Meenen of Gurley is always on the go, boarding planes in the last several weeks to Washington, D.C., and Las Vegas, and driving to Tampa.

While that may not seem like a big deal to some, for Meenen, 64, it can be overwhelming and exhausting.

Meenen has Parkinson's disease, but she refuses to let the neurological condition prevent her from doing things she enjoys such as traveling.

She especially enjoys that travel when it helps a cause. Meenen went to Washington in February to lobby the Alabama congressional representatives for more money to fund research to find a cure for Parkinson's disease.

Although she didn't get to personally meet any of the Alabama representatives, she and several others from the state, including Linda Weaver of Guntersville, did meet with their aides and assistants.

"Bud Cramer has always been very supportive," said Meenen. "We appreciate what he has done and are sad he is retiring."

The Alabama delegation joined some 250 other Parkinson's disease advocates from around the nation in Washington, where they not only lobbied for more funding, but attended training sessions and learned about new medicines for people with Parkinson's disease.

The Parkinson's Action Network (PAN) recently named Meenen the national liaison for people recently diagnosed with Parkinson's. She will be taking e-mails and calls from newly diagnosed patients and will serve as a referral service.

"We just want to help people with Parkinson's deal with this disease," said Meenen, who was diagnosed with it when she was in her early 50s.

She began having trouble getting in and out of a car and bed, with excruciating back pain when she did. She went to Dr. Cobb Alexander who sent her to Dr. Richard Hull who diagnosed Parkinson's.

"I didn't know anything about it, but a first cousin had it and another cousin and an aunt have it," said Meenen. "I asked, 'Why me?' but the doctor said, 'Why not you? You need to make something of it.' "

Meenen immediately began to research the often debilitating disease that affects 1.5 million Americans, mostly men. She started talking to anyone who would listen and got involved in local support groups.

She began attending activities on a national level and met several celebrities and noted people who have Parkinson's, including former U.S. Attorney General Janet Reno and actor Michael J. Fox. She also met Lonnie Ali, wife of boxing great Muhammad Ali who has Parkinson's.

Meenen also has a disease closely related to Parkinson's, Dystonia, and underwent a radical surgery, Deep Brain Stimulation (DBS), in February 2007 to help control her muscle movement.

Parkinson's was first described as "the shaking palsy" in 1817 by British doctor James Parkinson who identified the symptoms: trembling in the hands, arms, legs, jaw and face, rigidity, or stiffness of limbs and trunk, slowness of movement, postural instability or impaired balance and coordination

(www.Parkinsons.org).

There is no known cause or cure for the disease, which Meenen says can be genetic or triggered by something in the environment.

To control her own symptoms, she takes the prescription drug Sinemet, which she calls "my best friend. I live for Sinemet."

Meenen said it's important she "keep moving" so her body doesn't get stiff.

She said one of the most incredible things that has happened to her since being diagnosed with Parkinson's is her singing ability.

"Most people don't realize their creative talents until after being diagnosed with Parkinson's," said Meenen. "I always wanted to sing, but never could before I was diagnosed. It surprised my husband, Danny, when I sang karaoke in Savannah (Ga.)."

Meenen also writes poetry, and a songwriting couple in Ohio, Andre and Pamela Clark, have put her poems to music and are recording them on a CD, "Songs of Love and Hope." Meenen will sell the CDs with proceeds going to Parkinson's research.

She and Danny have been married 37 years and have two sons, Robert English of Birmingham and Bryan Meenen of New Market, and one grandchild, Sydney Lynne Meenen, 2.

Despite the disease, Meenen stays busy. Last Saturday, she sang the national anthem at the Parkinson's in the Park event in Savannah. On April 26, she will travel to New York to walk two miles in the Parkinson's Unity Walk in Central Park. In June she will be in Bristol, Tenn., and in Atlanta in August for events related to raising Parkinson's disease awareness.

And the flights?

"The airline attendants are always wonderful," she said. "I've never had any problems on a plane."

Each October for the last five years, she has coordinated a fundraiser for Parkinson's Alliance with an event at the Northeast Alabama Sporting Clays Range in Fort Payne. In the last three years, she has raised $33,000.

"I'm going to go as long as I can," said Meenen. "I feel liked I'm blessed and I was chosen to do this. I have a lot of hope."