Every day is a great day for Harry Lewis. “He’s so plugged into life that he wakes up singing 'You Are My Sunshine,'” says his wife Sue. “He tells me ‘there’s nothing wrong with me – I feel great!’” she says.
It wasn’t always this way. When he was diagnosed with Alzheimer’s several years ago, Harry was anxious and depressed. When his doctors prescribed an antipsychotic medicine to control his hallucinations, he started having seizures. There weren't any great days in the Lewis household back then.
Once Harry’s diagnosis was changed to dementia with Lewy bodies (DLB), Sue says, she was able to educate herself and work with his doctors to improve their quality of life. Although there’s no treatment to stop progression of DLB, the medicines Harry takes have reduced his symptoms considerably.
“Getting the right diagnosis and treating the many LBD symptoms correctly can make a significant difference in the quality of life of both the patient and his primary caregiver,” says Angela Taylor, board member and chair of the Science Committee for the Lewy Body Dementia Association. Along with Sue Lewis and Joseph Friedman, M.D., she talks about why an accurate diagnosis is so important in Part 3 of the Tangled Neuron series on Lewy body dementia.
In addition to the right diagnosis and treatments, Sue thinks a good attitude is the key to living with the disease. She focuses on the positive, and tries not to give in to what she sees as a common and deep-seated fear of dementia.
“As I’ve grown as a caregiver and thrived through dementia, we’ve lost that mask - that bored look Harry used to have on his face,” she says. “I’ve refused to let him be ‘unplugged.’ When he was mobile, I took him to concerts and potluck suppers, and everyone helped entertain him. He told everyone dementia made him a better dancer - he lost his inhibition! Even now that he’s in a wheelchair, we’ve stayed social. And I bought two guitars - it’s not pretty, but we play the blues.”
Despite her positive attitude, Sue finds the fluctuations in Harry’s symptoms maddening, and she worries about how they would handle any change in the environment and routines she's created for her husband. “I live with the fear that everything can crumble every day,” she says. “What if our house burns down? I can’t go live in a motel with Harry. What if we need a new roof or a new furnace? Harry couldn’t deal with that right now.”