Ida Manning: Why I Participated in an Alzheimer’s Clinical Trial

Ida will be one of our honored speakers at our Chicago Alzheimer’s Awareness Day event on Nov. 8th. Learn more and RSVP here.

I was born in a displacement camp near Salzburg after both my parents survived slave labor camps in Poland and Germany during World War II. My mother raised three daughters and took care of her husband until she couldn’t. She passed away in 2012 but I’m still very emotional about it. She died of Alzheimer’s disease.


We didn’t realize that was what it was at first. Mom was my father’s caregiver as long as she was able and I think that gave her focus. For two years my mother didn’t recognize my father and still tried making breakfast for him. I was my parents’ caregiver and grateful daughter. Mom kept moving until my father died of heart failure at the age of 92 and then she retreated to her bed. It was really horrific. At the end, she couldn’t walk or talk or communicate – except through music.

Mom had a beautiful voice and was always singing. When I was young, she taught me songs in lots of different languages – German, Hebrew, Polish, Yiddish. So when she got sick, I would sing familiar songs to her and she would sing along. At the very end, she would hum along.

Mom hadn’t been talking at all. Then one night – out of the blue – she said, “You look really good tonight.” We had a back and forth conversation for about an hour where she could answer questions about things like what made her comfortable. I asked her whether we had the right TV shows on for her and she said, “It’s OK. It changes channels by itself.” So I knew she understood a TV show would end and another one would come on. This one hour of conversation was amazing, even though her words were quite simple. She said she was comfortable and she knew that we loved her. That’s when I knew I had to do something myself. That’s what led me to become a research participant.

I wanted to contribute to finding a way to treat Alzheimer’s disease. I don’t have millions of dollars to give but I can still contribute by participating in research.

My mother’s brother also died of Alzheimer’s. My cousins and sisters and I all have concerns about getting Alzheimer’s, because we know there is a genetic element. We know how emotionally difficult and financially difficult it was to care for our parents.

So for me, Alzheimer’s research is very personal. Participating in research is a way for me to face my fears about getting Alzheimer’s and do something about it.

I’ve been in two studies at Great Lakes Clinical Trials. From the minute we walk in the door, the Great Lakes Clinical Trials team is welcoming. I felt appreciated as a research participant. They are very encouraging and I really appreciate that.

First, I was in a double-blind study of a medication so I still don’t know if I received the medicine or a placebo. It involved lots of intense memory studies. I’ve never been really good at math. One cognitive test asks you to subtract from 100 by seven. So I studied for that. I don’t know if you’re supposed to do that. I even made flash cards. My granddaughter still teases me about that. She’ll ask me, “What’s 100 minus seven?” I don’t think you can practice for most of those cognitive tests.

The second study I was in involved a genetic test to find people with the APOE4 gene. You have to have at least one copy of the gene to be in the study. My husband and I both signed up and took the genetic test, but he doesn’t have the APOE4 gene so he’s not in the study.

I have one copy of the APOE4 gene. Learning that gave me a sense of relief because I know where I stand. I have a 20-25% chance of getting Alzheimer’s.

The next step in the study was an MRI and a PET scan. After those, they dropped me from the study because I don’t have amyloid build-up in my brain. So I learned I’m not as much at risk as I thought I was. That made me really happy.

I’m 71 years old, and now I know it would take another 10-15 years to build up enough amyloid in my brain to cause symptoms. By then, maybe we’ll have new treatments.

So now I have some choices. I’m trying to exercise and get my blood pressure under control. Since participating in the clinical trials, I am more aware of doing puzzles and things to keep my mind fresh.

I’m also in a small study where I get interviewed by phone every four months about how I’m dealing with having an APOE4 gene. That’s helped me feel better.

Before I got involved in clinical research, every time I misplaced my keys or couldn’t find the right word, I thought I had Alzheimer’s disease. But the cognitive study gave me more confidence in my abilities. They gave me lots of lists to remember, or items to sort in my mind. I learned I have a better memory than I thought. I still forget my keys – but I don’t forget what keys are.

Being a research participant offers benefits for society, like helping find a cure for Alzheimer’s. But you also learn about yourself, like you might learn you don’t have Alzheimer’s or you are more capable than you thought. It also gives you a team of professionals looking out for you.

As a research participant, you can be proud that you have personally contributed to finding a treatment for Alzheimer’s, which really is a terrible disease.

I want to encourage other people to participate. Through all of these studies we are identifying more and more tools to deal with Alzheimer’s disease. We’re close to a breakthrough, but we need to study it more.

I miss not being in a clinical trial now. I definitely would do another one.

Ida will be one of our honored speakers at our Chicago Alzheimer’s Awareness Day event on Nov. 8th. Learn more and RSVP here.

Great Lakes Clinical Trials is part of the Global Alzheimer’s Platform Foundation’s GAP-Net network. GAP and GAP-Net are committed to disrupting clinical trial recruitment and study processes and to speeding up clinical testing cycles. GAP-Net sites share data, best practices, use of a central Institutional Review Board and common clinical trial contracts.