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'Still Alice' author speaks about Alzheimer's in Arlington Heights

Talking about Alzheimer's disease might be the first step to finding a cure, or at least to finding a better way to connect with loved ones living with the disease, author Lisa Genova said during a discussion about her novel "Still Alice" on Monday afternoon at Lutheran Home in Arlington Heights.

Genova visited Lutheran Home as the kickoff event to a month full of Alzheimer's awareness activities and spoke about her writing process, watching her grandmother decline from the disease and what she hopes is the future of memory care.

Genova was working as a neuroscientist and researcher when her 85-year-old grandmother walked to a bowling alley in the middle of the night thinking it was daytime and couldn't figure out why her team wasn't there.

"I think there is a certain denial families go through when this starts happening to someone you love," Genova said.

Soon after, her grandmother was diagnosed with Alzheimer's. Genova decided to learn everything she could about the disease. In her research, she rarely heard stories from the point of view of the people with the disease, which is why she decided to write "Still Alice."

"I wanted to know when does normal forgetting cross the line to Alzheimer's and if I can no longer remember who I am, am I still me," she said.

Genova built relationships with more than 25 actual Alzheimer's patients while doing research for "Still Alice."

It took her about a year and a half to write the book. Then she sent out 100 query letters to agents and publishers. Some never responded, while some wrote back and said the topic was too sad for anyone to read.

Genova self-published the book and went on the road selling it herself until it was picked up by Simon & Schuster. It went on to spend 59 weeks on The New York Times Bestseller list and became an award-winning movie starring Julianne Moore.

"She gave me great insights on how to deal with some of the things I've seen," said Lea Conrad of East Dundee, whose grandmother and aunt had Alzheimer's disease.

Genova said she hopes her book and the movie have helped raise the national profile and conversation about Alzheimer's, a disease she said many people don't talk about.

"It's really hard to find a cure for something we are all pretending doesn't exist," Genova said.

Jane Geske of Itasca spent 30 years as a geriatric nurse in the suburbs and said she came to the talk because she always loved working with patients with memory care issues.

"I just enjoyed them and really enjoyed finding the person who was still in there," Geske said.

Genova stressed that people with Alzheimer's are still people, but their reality has shifted. "This disease does not affect your ability to love; it does not affect your ability to experience joy," she said.

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