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Living with early-onset Alzheimer's

West Columbia native Missy Callahan was diagnosed with early-onset Alzheimer's at 45 years old.

WEST COLUMBIA, S.C. — The Alzheimer's Association released its annual facts and figures report on Tuesday, March 2.

Alzheimer's disease is the leading cause of dementia and the most expensive disease in America to treat. In South Carolina, more than 95,000 adults suffer from Alzheimer’s.

Early-onset Alzheimer's is a term used to describe the five percent of Americans who developed the disease before 65.

Missy Callahan of West Columbia was 45 years old when she received her Alzheimer's diagnosis.

Callahan had been noticing a change in her speech, the pace she walked, and been getting turned around driving home and walking her dog. After over a year and a half of neuro-testing, she had her answer.

"So when I finally did get the diagnosis," says Callahan, "as bad as it sounds, I was so glad to have a diagnosis. But then I had to come to terms with…ok now, this isn’t really a great diagnosis.”

It's been two years and Callahan says that after the initial shock wore off, she had to "pivot" her life. She stopped working, and her husband had to begin taking care of more of the financial matters in the house.

"I was in the finance business for 20 years and now I can't add two plus two," says Callahan.

With the cost of care so high, Callahan feels blessed that her husband was able to retire early to make the most of their time and take care of her. But she knows many who aren't as lucky.

"I have so many friends that are battling this disease and they live alone, and they don't have anyone. And they have to hire people to come in. I don't know how they do it."

In 2020, Alzheimer's and other forms of dementia cost $305 billion and in 2021 this number is expected to increase to $355 billion. Beth Sulkowski from the South Carolina chapter of the Alzheimer's Association described why the cost of care is so high for the disease.

"That’s because Alzheimer’s disease can last for many years if the person’s physical health is good, and often times they are, it is a long, slow caregiving process as the disease progresses," Sulkowski said.

Credit: Getty Images/iStockphoto

During the COVID-19 pandemic, there was an increase in deaths from Alzheimer's. Reports from the Center for Disease Control indicate 42,000 more deaths in 2020 than the previous five years or about 16 percent more than expected.

Through the pandemic, however, Callahan was able to connect with others living with Alzheimer's in a way she wasn't able to before.

"So virtually, I have been able to join peer-to-peer groups up in the Upstate in Greenville with the Greenville chapter," Callahan says. "And when I say 'I've been going through this' and you see the head nods on the computer, it's just a comforting feeling."

Callahan also has a Facebook group that chronicles her journey with the disease, called "Head On My Approach to Living life with Alzheimer's." On the page, Callahan continues her fight to advocate for a cure.

“It may not be in my time, and I’m plenty fine with that, but I’ll continue to advocate for a world without Alzheimer's.”

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