Mary Pletka, 51, has started a support group for West Virginians who, like herself, have been diagnosed with early-onset Alzheimer's. The group's first meeting is Sept. 14.
Mary Pletka has a tattoo on her foot of forget-me-not flowers, and the date that doctors diagnosed her with early-onset Alzheimer's.
Mary Pletka has a tattoo on her foot of forget-me-not flowers, and the date that doctors diagnosed her with early-onset Alzheimer's.
The tattoo is a reminder to Pletka, 51, of her continuing struggle with the debilitating disease that attacks the brain.
Pletka is part of a growing number of men and women under the age of 65, across West Virginia and the nation, who have been diagnosed with early-onset Alzheimer's.
The disease typically affects individuals in their 60s, 70s, and 80s, but in recent years it has begun to manifest itself in middle-aged adults.
"It's growing and we don't know why," said Jane Marks, director of the Alzheimer's Association's West Virginia chapter.
About 48,000 people in West Virginia have been diagnosed with Alzheimer's; about 5,000 of those have the early-onset version.
"That's a big number for a little state," Marks said.
About 5.3 million Americans have Alzheimer's, the nation's fifth leading cause of death in people 65 and older.
Pletka began to notice the signs of Alzheimer's when she was 48, but it took nearly a year before doctors diagnosed her with Alzheimer's.
Part of the problem was fighting with insurance companies to pay for the tests, she said.
Her insurance refused to reimburse her some of the procedures because she was too young, and Pletka ended up paying for many of them out-of-pocket.
"There are a lot of walls because of my age, I'm not 55 and not considered a senior," Pletka said.
What started out as memory problems and changes to her behavior has now manifested into full-blown Alzheimer's, Pletka said.
Since her diagnoses, she has had to quit her job, lost her insurance and now relies on a state medical card.
She just qualified for Social Security under new state legislation, but will not qualify for Medicare for another year. She's eaten through her savings and her retirement fund to pay her medication and ongoing treatment and care.
It's been one fight after another, Pletka said: "It's terrible. People should not have to go through this."
Mary Pletka has a tattoo on her foot of forget-me-not flowers, and the date that doctors diagnosed her with early-onset Alzheimer's.
The tattoo is a reminder to Pletka, 51, of her continuing struggle with the debilitating disease that attacks the brain.
Pletka is part of a growing number of men and women under the age of 65, across West Virginia and the nation, who have been diagnosed with early-onset Alzheimer's.
The disease typically affects individuals in their 60s, 70s, and 80s, but in recent years it has begun to manifest itself in middle-aged adults.
"It's growing and we don't know why," said Jane Marks, director of the Alzheimer's Association's West Virginia chapter.
About 48,000 people in West Virginia have been diagnosed with Alzheimer's; about 5,000 of those have the early-onset version.
"That's a big number for a little state," Marks said.
About 5.3 million Americans have Alzheimer's, the nation's fifth leading cause of death in people 65 and older.
Pletka began to notice the signs of Alzheimer's when she was 48, but it took nearly a year before doctors diagnosed her with Alzheimer's.
Part of the problem was fighting with insurance companies to pay for the tests, she said.
Her insurance refused to reimburse her some of the procedures because she was too young, and Pletka ended up paying for many of them out-of-pocket.
"There are a lot of walls because of my age, I'm not 55 and not considered a senior," Pletka said.
What started out as memory problems and changes to her behavior has now manifested into full-blown Alzheimer's, Pletka said.
Since her diagnoses, she has had to quit her job, lost her insurance and now relies on a state medical card.
She just qualified for Social Security under new state legislation, but will not qualify for Medicare for another year. She's eaten through her savings and her retirement fund to pay her medication and ongoing treatment and care.
It's been one fight after another, Pletka said: "It's terrible. People should not have to go through this."
To push down some of these barriers, and help others who have been diagnosed with early-onset Alzheimer's, Pletka with the state Alzheimer's Association, has created a support group.
The group will meet every other week starting Sept. 14 at the Alzheimer's Association, 1111 Lee St. E. in Charleston.
"There is a stigma," Pletka said. "People are embarrassed to say they have Alzheimer's, but it's not just for old people."
About five people so far have signed up for the support group. Pletka and Marks hope to see that number grow as the group becomes established.
"The challenge is getting people to participate," Marks said.
The West Virginia chapter of the Alzheimer's Association also offers support groups for spouses, family and caregivers.
Pletka hopes to expand the group to include physicians and medical students, as an opportunity for medical professionals spend more time with people in her shoes, recognize the signs and understand that early onset Alzheimer's is a growing problem, she said.
"It just has to get out there," Pletka said. "People have to know and we have to find a cure."
There are so many barriers in place because insurance companies, the state and the nation have taken a "blind eye" to this issue, Pletka said.
They're not prepared to deal with the growing number of people who are being diagnosed with Alzheimer's - a number that is expected to spike over the next decade with an aging baby boomer generation, Marks said.
"Alzheimer's is the fastest growing disease in the county, but it is not a federal priority," Marks said. "With 5.3 million Americans have the disease, something has to be done."
Individual death from the Alzheimer's rose 46.1 percent, from 2000 to 2006. In comparison, all other leading causes of death in the nation have decreased, according to data from the Alzheimer's Association.
People with the disease cost the Medicare system three times more than the average person, and cost the Medicaid system nine times more.
"It will bankrupt our nation if we don't address this," Marks said.
For information about the Alzheimer's Association, call 304-343-2717, or visit www.alz.orgt/wv.
Reach Veronica Nett at veroni...@wvgazette.com or 304-348-5113.
