Sheldon Freedman, a former arts administrator and resident of The Villages, Florida, knew very little about Alzheimer’s disease when he was diagnosed with a mild form of the disease at age 84. Like many others, he knew the primary symptoms of Alzheimer’s disease: progressive memory loss, shortened attention span, and difficulty organizing thoughts. However, he desired to learn more and also hoped to slow or reduce the development of his disease. Then he heard about a clinical trial of a new potential medication for Alzheimer’s disease being conducted at Charter Research. After exploring the opportunity, he decided to participate in the clinical trial. We asked Mr. Freedman about his clinical trial experience and what he learned along the way.
How did you first decide to enroll in a clinical trial?
I was diagnosed with mild Alzheimer’s disease around April 2019. My wife noticed that sometimes I was forgetting words. I was still cognitive and saying full sentences, but we knew something was wrong. Then, I think it was maybe June of 2020, when I read an ad from Charter Research in our local newspaper here (The Villages Daily Sun). I called them and ended up speaking to one of the staff. They needed people aged 50-85 to participate. I guess I was one of the few people who showed up there that was 85 years old and cognitive enough to be able to participate. They understood that I have what's called mild or moderate Alzheimer's disease. They asked me to come in to take a series of diagnostic tests to see what was actually going on with my memory and my ability to function properly. Based on all those tests, I qualified to join the study. It took about a month to be vetted, and then they told me, “Okay, come on in.” They explained to me in depth what this trial for Alzheimer's was about and that it would take about six months.
Were you at all nervous to sign up for the trial?
For starters, I was not nervous. I felt this was something I could qualify for and that the staff seemed to be very professional. They weren't leading me into no man's land, and they talked me through every EKG, MRI, and PET scan. I had no qualms at all, putting myself into their hands. They really took good care of me. There was a series of screening questions about suicide, though, that really threw me. I was asked a series of questions like: “Have you ever thought about killing yourself? Have you ever asked anybody else to assist you in killing yourself?” That really, really, really threw me. At the moment, you know, I was kind of upset. But they explained that they understood my feelings and had to ask these questions because it was one of their parameters to know what someone was dealing with.
What other questions did they ask?
Every time you come in, they ask you the same series of questions and exercises. For example, I was asked to listen to this short series of sentences and repeat back as much as I could remember. I was pretty good at all this, you know. I wasn't a smartass; I just was able to do what they asked me to do. I did notice, though, that towards the end my answers were getting slightly worse.
What did the treatment entail?
I did my treatment in an overnight clinic. They put a needle in my arm and injected me with a serum – I didn’t know if it was the real thing or a placebo. That’s the way the study is designed. They did tell me the study was to look for any effect on the amyloid plaque in my brain. Everything was timed, and they asked me how I felt from second to second. I had no reaction to the injection. I also did a lumbar puncture – I didn’t know what a lumbar puncture was, but the doctor explained everything clearly. They used a needle to take a small amount of my spinal fluid to measure how much amyloid plaque is in my brain. My first study drug dosage was September 2020 and my second dosage was October 2020. I had 14 visits after that, including three lumbar punctures, two MRIs, and one pet scan.
Charter Research asked me to participate in another study that's starting now, so I’ll do the screening process this spring to see if I qualify. This study is what they call phase three. I'm 85 and I'm still going strong!
Do you know if you’ll be getting the drug or placebo?
They’re saying that I have a fifty-fifty chance of getting the drug. I have also been told that if I get the placebo, then after the trial, if the drug has proved successful, that I’ll have access to the drug. Let’s hope it works!
What was your goal going into this process?
Well, I tell you, it goes back to something I said at the beginning. My overall goal was to determine the specifics of my disease. I wanted to know, for my own self reasoning, where I am in this old ballgame of Alzheimer's. I'm glad I did it. Because I now know where I stand, that my dementia has maybe escalated a small amount, but that I don't have severe dementia. And I know that maybe I'll be helping people by going through this study. Maybe I'd be helping others. And helping myself too.
Knowing what you do now, would you ever go back and do it again?
Yes, absolutely. I made a decision, I wanted to know more about myself and what's going on in my brain. I cannot say enough for the staff at Charter Research. My wife and I had a really good working relationship with the staff. We really did. I trusted them implicitly and knew I was being taken care of properly. Nothing was being done that I would be subject to regretting later. You know, they even made me a birthday cake. At first, I just went to see what was going on with my brain. But when we left, we all were almost like family.
If you’d like to explore the opportunity of participating in a clinical trial for Alzheimer’s disease, call Charter Research at 352-775-1000.