The Journal Record
OKLAHOMA CITY – Lori Nelson is telling her story while she still can.
Her friends noticed before she did. It started with little lapses in memory – getting lost on familiar routes, for example, or losing her train of thought. Then she noticed bigger signs, like how difficult it became to write. Her husband, Jason, insisted she see a neurologist.
At 54, Lori Nelson was diagnosed with early onset Alzheimer’s in October. Most people picture the elderly when thinking of Alzheimer’s patients, she said, not a mother with children in middle school and high school.
“I know how this will end,” she said. “But I don’t know what’s going to happen between then and now.”
She said that as some things have gotten harder, like remembering birthdays or stories that her children tell her, other things have gotten easier. She used to cry every time she talked about her diagnosis and the events leading up to it. Now she tells it as often as she can while she still has the capacity to do so. She said there isn’t enough awareness about Alzheimer’s disease in general, especially about early onset cases. And there is too much work left to do to find a cure.
Nelson worked in public relations in Washington, D.C., as well as in Oklahoma. Jason, a Republican representative, was a longtime member in the state Legislature. The couple spoke to a group of lawmakers, advocates and other interested people for the Alzheimer’s Association Oklahoma chapter’s legislative luncheon Tuesday.
Mark Fried, the organization’s president and chief executive, said more than 63,000 people in Oklahoma have Alzheimer’s disease. Randle Lee, the organization’s director of advocacy and strategic relations, said that although measles and mumps are the first to come to mind when considering a public health crisis, Alzheimer’s has reached the same level. About 10 percent of the Medicaid budget in Oklahoma is spent on dementia issues, he said.
That percentage will continue to grow unless the disease receives more research funding and scientists find a cure. In Oklahoma, officials are focusing on training and recognition, he said.
The House of Representatives passed House Bill 2514 on Tuesday. The measure would require all hospice workers in Oklahoma to undergo one hour of Alzheimer’s training. Lee said the organization will soon push to make four hours of annual training for certified nursing assistants a standard statewide.
State Rep. Cyndi Munson, D-Oklahoma City, co-sponsored the bill as well as House Concurrent Resolution 1014, which designates the disease a public health issue as the sixth-leading cause of death among American adults. Statistics from the Centers for Disease Control and Prevention show that 13.6 percent of Oklahomans over 45 had experienced some kind of confusion or other cognitive impairment in 2015, but more than half of them never talked with their primary care provider about it.