One Woman’s Fight Against Alzheimer’s Disease

Many with early-stage Alzheimer’s disease are finding ways to maintain their quality of life in spite of the progressive brain disorder. One of them is former college professor Lydia Panero, who had to give up her career because of the disease, but found fulfillment in performing onstage. Read on to learn how she’s coping with her diagnosis and how she stays positive…

Lydia Panero of Mamaroneck, N.Y., taught literature for 40 years at Manhattan College. So when her language skills started to deteriorate in 2006, she knew something was amiss.

At age 67, Panero was diagnosed with Alzheimer’s disease, a form of dementia marked by memory problems, confusion, learning deficits and personality changes.

“In class with my students, the first thing I noticed was that I was losing my nouns,” Panero says.

It’s not that she didn’t know what objects were. Rather, “she just couldn’t find the words that identified the objects and ideas she was trying to talk about with her students,” says 80-year-old Harry Grier, her caregiver and husband of 46 years.

At first, she coped by teaching fewer classes.

“Eventually, that became overwhelming,” Panero says. “I said to Harry, ‘I don’t think I can do this anymore.’”

She left the career she loved.

But Panero now has turned her sadness into a determination to fight Alzheimer’s disease, advocate for research funding and live a rich and joyful life.

In this exclusive Lifescript interview, the couple discusses Panero’s early-stage diagnosis and the steps they’re taking to combat Alzheimer’s disease.

How soon after your symptoms surfaced did you receive an Alzheimer’s diagnosis?
Panero: It took about a year. I first went to my general practitioner, who referred me to a neurologist. The [specialist] told me that forgetting the names of objects was all part of getting older.

[But] when things didn’t get better, the neurologist did more testing and diagnosed me with frontotemporal dementia [which affects the brain’s frontal and temporal lobes, areas that govern personality, behavior and language].

Grier: That doctor suggested Lydia get a second opinion from [neurologist] Karen Marder, M.D., at the Taub Institute at the Columbia University Medical Center in New York City. Marder conducted more tests that revealed Lydia had Alzheimer’s.

How did you feel about the diagnosis process?
Grier: It was very frustrating. Diagnosing Alzheimer’s disease [is] like reading tea leaves.

Panero: It’s sad that doctors don’t know the full story until an Alzheimer’s patient dies and then they examine that person’s brain. When I die, scientists will get my brain to examine.

How did you first feel about the diagnosis?
Panero: I was devastated.

Grier: Lydia loved teaching poetry, plays and fiction to her students, so she was understandably devastated when she had to give up her lifelong career and passion.
What brought you out of your initial depression after the diagnosis?
Panero: What turned me around was participating in a play about what it’s like to have Alzheimer’s, called To Whom I May Concern.

The play was created by Maureen Matthews (a psychiatric nurse researcher and coordinator of the early memory loss program at the Stamford, Conn., Counseling Center). Five of us read aloud letters we wrote to friends explaining what it’s like to have Alzheimer’s disease.

I used parts of the letter I wrote to my dean explaining why I had to give up my teaching post at Manhattan College. I started doing the plays in 2007 and have been acting in several showings each year.

What medications and supplements do you take to control the symptoms of dementia?
Panero: When I was first diagnosed with Alzheimer’s, my doctor prescribed Razadyne, a medication that’s similar to Aricept [donepezil, a cholinesterase inhibitor that improves mental function – such as memory, attention, social interaction, reasoning and language abilities, and the ability to perform daily activities – by increasing acetylcholine, a naturally occurring substance in the brain]. Recently, my doctor [also] started me on Namenda [memantine, which reduces abnormal activity in the brain].

So far, so good. My symptoms haven’t gotten much worse since I was first diagnosed with Alzheimer’s about five years ago.

Grier: Lydia’s short-term memory is still good. Her long-term isn’t as good.

Panero: I try not to think about it, but probably my Alzheimer’s disease will get worse.
What other steps do you take to ward off depression and avoid the pitfalls?
Panero: We love music, so we go to lots of concerts. We also love to read. I walk outside or go on my stationary bike for 30 minutes each day.

Grier: We walk through a nearby conservancy, where we see deer and turkeys. One year ago, we went to China and had a wonderful time. We’ve also traveled throughout Europe and have been to Mexico and Costa Rica.

Lydia still likes to cook and I like to make salads, so we enjoying making a meal together.

She also likes to read the daily newspaper out loud so she can hold onto her vocabulary, and to debate the rules of grammar with me, so she stays sharp.

Do you also participate in support groups?
Grier: Lydia participates in two support groups. One is run by the local Alzheimer’s Association and another one is sponsored by the Taub Institute.

I’m also a member of a caregiver support group run by the local Alzheimer’s Association.

You two are advocates for funding Alzheimer’s research. What lobbying activities do you participate in?
Panero: Every year, we travel to Albany [New York’s capital] to talk with state representatives about the need for more funding for Alzheimer’s research. We also participate in the annual Walk for Alzheimer’s put on by the local branch of the Alzheimer’s Association.

I also participated in one drug trial – and I’m always on the lookout for another study to become part of in the hopes that a medication that actually stops the disease, and doesn't just control the symptoms, will be found.

Grier: We also just returned from a three-day forum in Washington, D.C., [which] was a great success. We visited legislators and their staffs and found them very receptive to hearing about the scope of the Alzheimer’s disease crisis. We also talked with them about new and pending legislation, including the National Alzheimer’s Project Act (NAPA), which recently passed unanimously in both houses of Congress.

This act directs the Secretary of Health and Human Services to create a plan to research Alzheimer’s disease and establish a protocol for caring for patients.

The 600 advocates who attended the forum also heard about two acts that will soon be voted on: The Hope for Alzheimer’s Act would utilize Medicare to expand the diagnosis of Alzheimer’s and mandate care-planning by physicians.

And the Alzheimer’s Breakthrough Act would make Alzheimer’s disease a priority for the National Institutes of Health (NIH) and require NIH scientists to submit annual reports to Congress [about] the progress of their studies.

Are there any silver linings to having Alzheimer’s?
Panero: The upside is my friendships with people who have Alzheimer’s. They’re great.

Grier: Lydia enjoyed introducing her friends and members of her support groups to some of her favorite female authors – Gwendolyn Brooks, Joyce Carol Oates, Adrienne Rich and Zorah Neale Hurston.

She also loved performing in the play To Whom I May Concern.

What is your big hope for Alzheimer’s disease?
Panero: That scientists find a cure for Alzheimer’s. Wouldn’t that be great!

For more information, visit our new Alzheimer's Disease Health Center.

How Much Do You Know About Alzheimer’s?
More than 5 million Americans have Alzheimer’s disease, and that number could climb to 16 million by 2050. Women face a higher risk of developing it than men, and are also more likely to become caregivers.