Marsha and Lionel Grove met in high school and have been married for over 50 years. Marsha graduated from UCLA and worked as a clinical laboratory scientist. Lionel is a USC alumnus and aerospace engineer. They now both participate in multiple studies at UCI MIND.
What motivated you to participate in research at UCI MIND?
Marsha: Our families are surrounded by Alzheimer’s disease. My sister and my mother both died with Alzheimer’s disease and Lionel has it in his family as well. We’ve experienced it first hand, so we want a cure to be found because we know just how horrible the disease is. It’s too late for us if we do get it, but we’re confident that if we keep participating in research, it will lead to something eventually.
Lionel: Yes, even if it doesn’t help us, we hope it will help our kids, our grandkids, and their families in the future.
How long have you been a research volunteer with UCI MIND and what has motivated your continued commitment to the program?
Marsha: We recently completed our first annual assessment for the Longitudinal Study, and for the past two years, we’ve visited the center once a month as part of the A4 study. We’re motivated to keep coming back because this is important work! And the people here, the whole team, are extremely nice. They know us as people, not just experiments. They are all very encouraging and say that they really appreciate us being here, so why wouldn’t we do this?
Lionel: Also, we’ve gone to presentations by Dr. Joshua Grill. He explains what researchers are learning based on the studies we’re involved in. We like to hear how the research is progressing.
What is involved in a typical research study visit?
Marsha: For the A4 study, most visits are short. We get set up for an infusion and have our blood pressure and temperature taken. They ask us whether we’ve had any changes in our health. Then, we receive the infusion in our arm for about 20 minutes while we read or listen to music.
Lionel: And we don’t know whether we’re getting the drug or placebo. But we do know that if we’re getting placebo, we can take the drug at the end of the study if the research shows it’s working.
Marsha: Some visits are a little longer because they include additional tests like cognitive testing, blood draws, and lumbar punctures (which are optional, but we decided to go for it). It was absolutely not a big deal at all. We just leaned over and talked to Dr. Pierce while she performed the procedure. She numbed the area and retrieved the fluid for about 15 minutes or less. Then we had to lay flat for an hour and take it easy for the rest of the day. I’ve heard about people getting headaches, but that’s it.
What has been the most challenging aspect of participating in research?
Marsha: It’s not that challenging. The frequency can be a little bit challenging, but the study team works around our schedule.
Lionel: Yes, like we have a trip planned to Alaska in the coming months and they scheduled us right before and right after. They work around our schedule.
What has been the most rewarding aspect of participating in research?
Marsha: Well, the fact that we might be doing some good and the people we get to interact with. They’ve become our friends – the research team and the people we meet at the participant appreciation events.
Lionel: And the opportunity to hear updates from researchers, to learn about the latest happenings. We also stay in touch on the Internet and get notifications about Alzheimer’s disease research and upcoming events.
What is one piece of advice you would give to people considering volunteering for research at UCI MIND?
Marsha: I think a lot of people are scared. Alzheimer’s is a scary thing. It’s definitely something Lionel and I are concerned about. But, I would tell people thinking about it to go for it because they can make a difference. Every single person can make a difference.
