On the Record

Alzheimer's advocate

On the Record with Tom Oestreicher

Tom Obstreicher
Tom Obstreicher

SYCAMORE – Tom Oestreicher of Sycamore was diagnosed with Alzheimer’s disease in 2013 at age 65.

Oestreicher knew that he didn’t want to sit idly by, give up and let the disease run its course. Instead, with his wife Marilyn by his side, he is standing up, fighting back and having his voice heard as an advocate for others diagnosed with the disease.

Oestreicher is one of 10 new members of the 2016-2017 Alzheimer’s Association National Early-Stage Advisory Group. Oestreicher was chosen from 56 applicants across the country to be a part of the group.

As a member of the group, Oestreicher is a national spokesman for media and educational events, raises awareness of Alzheimer’s and advocates for research funding for the Alzheimer’s Association’s programs and materials.

Oestreicher, a retired teacher for more than 33 years, a professional speaker for more than 40 years and a published author of four books about the Civil War, continues to stay active in community groups, including Sons of Union Veterans of the Civil War, and is writing his fifth book.

Oestreicher spoke to MidWeek reporter Katrina Milton by phone to discuss his role in the advisory group, his Alzheimer’s diagnosis and living with the disease.

Milton: What is Alzheimer’s?

Oestreicher: Alzheimer’s is often misunderstood. You don’t lose your memory all at once. You start to lose your short-term memory, but the process can take 15 to 20 years. Dementia is an aging process, but Alzheimer’s is a disease of the brain. We have no idea what causes it or how to stop it. We are looking into processed foods, but people in remote areas of Africa have it. An entire village in South America has it. Maybe it’s a gene? Nobody really knows.

Milton: How and when were you diagnosed?

Oestreicher: People often joke that they’re getting Alzheimer’s when they forget their keys. Everyone has those moments. What’s different about Alzheimer’s is that it’s not physical, it’s mental. I taught for 33 years. In 2012, I was lecturing about the Civil War, history and economics. I realized that I was missing things in class that I’ve taught about for almost 40 years. I started having short-term memory loss, but the things I know well, like the Civil War and history, are embedded in my brain as long-term memory. When my daughter asks me what I had for breakfast that morning, I reply, “I don’t really know, but I’m sure coffee was involved.”

Milton: How do you describe Alzheimer’s to someone who asks?

Oestreicher: I describe Alzheimer’s like a glacier. Little pieces of memory start to fall off. You lose a little at first, then bigger and bigger. Soon, there’s no more glacier.

Milton: What are some of your roles as an Alzheimer’s Association National Early-Stage Advisory Group member?

Oestreicher: We participate in a two-hour conference call once a month. We work with pharmaceutical groups. During clinical trials, we write the summary that is presented to patients and families. Often, those forms have scientific and biologic terms. We simplify it into everyday language so they can understand the information. We also appear on and create TV and radio commercials. The advisory committee writes the copy, so we choose what message the commercials relay.

Milton: Can you tell me more about your TV and radio appearances?

Oestreicher: My wife Marilyn and I appeared on a one-hour special on WGN TV called “Unforgettable: Living with Alzheimer’s” (http://wgntv.com/2016/11/19/unforgettable-living-with-alzheimers). We also spoke on Dean Richards’ radio show and also appeared on WYCC PBS Chicago’s “Americans Living with Alzheimer’s” (https://www.youtube.com/watch?v=Zj6AtwJcb3k). For me, it’s important to promote awareness and share information. Alzheimer’s is the sixth leading cause of death and is predicted to be the No. 2 cause within the next 10 years. More people die from Alzheimer’s than breast and prostate cancer combined. It’s why there needs to be more funding and research for a cure.

Milton: Do you keep up-to-date with research and scientific breakthroughs?

Oestreicher: As a member of the group, I am updated every day about what’s happening in the 70 research facilities around the world. But if a cure is found, they’re testing on a mouse. They will have to go through steps to test on humans, then it has to be passed through the FDA. It’s why we’re going to testify in front of Congress in March. There has to be more advocacy and funding for research at state and federal levels.

Milton: How do people die from Alzheimer’s?

Oestreicher: You start to stumble and fall and lose your balance. Then you lose certain abilities, like having difficulty swallowing. Your brain doesn’t send the signals to your heart, lungs and kidneys. Soon, your body functions shut down. You die with it, not because of it. The process can sometimes be slow. It could take 20 years.

Milton: Are you still involved with groups and the community?

Oestreicher: I’m still very much involved with my groups, including the Sons of Union Veterans. I read all the time. I still function. Marilyn is my care partner. She’s a care partner, not a caregiver, because I can still function and do everyday things. It’s important to stay active both physically and mentally, to do things like paint or puzzles. I am working on my fifth book, a fiction about modern-day Templars looking for Christ’s crown of thorns.

Milton: Do you have advice for readers of the article?

Oestreicher: Try to go in for neurological evaluations. Many people are in denial or brush it off as old age. There is no cure, but there are two drugs, Aricept and Namenda, that can slow the process down. … If you’re diagnosed with Alzheimer’s, it’s a death sentence. It’s difficult to say this, but it’s true. There’s no cure. However, that diagnosis doesn’t mean that life is over. You can and should continue what you do. Enjoy life. Also, remember that you’re not alone. There are other people who are going through similar experiences.

Loading more