Posts Tagged "Lewy Body disease"

Alzheimer’s: from Denial to Empowerment

First came the denial.

Jay Reinstein

Jay Reinstein co-hosts a radio call in program every Tuesday.

Jay Reinstein’s unwillingness to accept that he had early onset Alzheimer’s disease was equal in magnitude to the responsibilities he would have to give up as the assistant city manager of Fayetteville, North Carolina. He was afraid the people working for him would judge him.

But disclosing his condition to coworkers was unavoidable. After Reinstein, who is 59, was diagnosed in March 2018, his doctor made this very clear: “You’re in a visible position and making decisions. You’ve got to tell them.” With encouragement from a therapist, Reinstein informed his boss, and together they mapped out a plan for telling the city’s elected officials and employees.

His disclosure wouldn’t be all smooth sailing. As news of his situation spread through City Hall, he felt hurt by the rumblings of some employees who felt he should leave immediately. What surprised Reinstein, however, was a feeling of relief after initially disclosing his condition to his direct reports during lunch at a local restaurant. “I felt the love, and people really cared. That made me confident that I knew I could tell others,” he said.

Seven months after his diagnosis, he retired – and he hasn’t looked back. Today, his daily schedule rivals that of, well, a city official.

Reinstein, who is now living in Raleigh, North Carolina, hosts a call-in radio program on Tuesday mornings to discuss issues involving race with his African-American co-host, Kevin Brooks, on WIDU 99.7 FM and 1600 AM. He relishes the challenge of doing research to prepare and even finds it therapeutic.

He is also one of two people with Alzheimer’s disease on the national board of directors for the Alzheimer’s Association, a role that includes occasional interviews with major newspapers. As a board member, he gets involved in strategic planning – just as he did in local government. Prior to joining the board, he spoke around the country on the organization’s behalf to put a public face on the disease and reduce its stigma.

Being around positive people “gives me a feeling there’s hope,” he said. “My philosophy is, I like to keep my brain busy.”

Bobbi Matchar, director of the Duke Dementia Family Support Program, says Reinstein is defying the stereotypes associated with Alzheimer’s. “Jay shows the world that it’s possible to have a joyful and meaningful life after being diagnosed with dementia,” she said – “and he does so with warmth, dignity, and enthusiasm.” …Learn More

Woman with Dementia Gets Lots of Support

Robert and Brenda Lugar

In the 3 1/2 years since Brenda Lugar was diagnosed with dementia due to Lewy body disease, she has found great comfort in the people who want to make her life a little easier.

This support takes many forms. At church on Sunday mornings, Shirley always reminds Lugar of her name. When Lugar is writing an email, she knows it’s okay to text her friend, Michele, or her sister-in-law, Janet, for help finding the right word. Lugar’s husband of 43 years, Robert Lugar, recently bought her a special board for Christmas so she has a place to work on her jigsaw puzzles – and he insisted she open it early and start enjoying it now.

“Just that little thing – it meant a lot,” she said in a recent interview.

It’s common for people who are grappling with the painful reality of a dementia diagnosis to deny their condition or hide it from others. But not Brenda. Asking for the support she needs – and getting it – is “soul cleansing,” she said.

Lugar, who is 62, didn’t arrive at this place immediately. When a neurologist at Duke University Medical Center diagnosed her, her initial reaction was denial. “I said, ‘Oh you can cure me.’ He said, ‘I can’t cure you but I can slow it,’ ” she said. “When he said that, I knew that wasn’t good. I kind of shut down.”

Lewy body disease is a condition in which abnormal protein deposits in the brain can cause dementia. For Lugar, disclosing her disease gives her an odd sense of relief – it’s an explanation to others for her memory loss, her intermittent hallucinations about animals, and her uneven performance at work. “I had to tell people, because I wasn’t the same person,” she said.

She even shared her condition with a store clerk to explain her fumbling with the credit card reader. “If I tell them [and] if they have any decency in them, they’ll treat me better,” she said.

Barbara Matchar, director of the Duke Dementia Family Support Program, which Lugar participates in, said that people like Lugar “who are open about their diagnosis often feel relieved.”

Lugar was diagnosed in 2017 after she noticed frightening things happening to her at work. …Learn More