Below is Ed Parker’s story about being a research participant. Reprinted with permission from 3550 magazine.
Article originally published in the Winter 2018 Alzheimer’s Update.
Have you ever wondered what it would be like to sleep inside a magnetic resonance imaging (MRI) machine with your head wired with electrodes to monitor brain function?
I am participating in four OHSU cognition and aging studies. I guess that as a former Stanford professor who taught human subjects research methodology and as a caregiver for a wife with Alzheimer’s disease, I was predisposed to help find some answers.
I am also a participant at OHSU in the national Alzheimer’s Disease Neuroimaging Initiative (ADNI) study. I like to think that I am included in that study because they needed people who are somewhat normal to compare with people who have the disease. Testing over time should tell whether my assumption of “normal” is correct.
In that study I had two scanning sessions in a positron emission tomography (PET) machine. I was given a colorful radioactive injection prior to each scan that will attach to specific abnormal tissues with a dye that can be detected by the machine. One scan looks for tau tangles and another for amyloid plaques, both of which are found in the brains of Alzheimer’s patients when autopsies are performed after they die.
Dr. Christopher Clark, a former professor of neurology at the University of Pennsylvania and the deceased husband of my domestic partner Anne Clark, was the lead scientist on the research team that developed and got Food and Drug Administration (FDA) approval for the type of injection needed to diagnose Alzheimer’s via a PET scan.
I also had a spinal tap to draw out some spinal fluid to test for indications of Alzheimer’s. Prior to the development of the PET scan technique, a spinal fluid test was the only biological test available that correlated with Alzheimer’s patients’ cognitive symptoms.
Both the ADNI study and the MRI sleep study include cognitive testing. Although the researchers do not disclose results unless they detect a fixable medical problem, I can tell from the tests that my memory, which was never good, is getting worse. But I think the disease I have is called “normal aging.”
Anne and I are in one longitudinal “aging in place” study together. Our apartment is monitored with motion sensors and an electronic scale that send data back to OHSU via the internet. When we step on the scale each morning it measures weight, body fat and pulse rate. It also gives us the local weather forecast. That study includes periodic medical and cognitive testing and a weekly questionnaire that we fill out on our computers.
I am also in a study about using technology for medical monitoring. For that study, I respond to online questionnaires about a variety of topics, including my opinions about Fitbits, smartwatches and other wearable devices. I have also tested the use of electronic pillboxes.
I am not always accepted into studies I volunteer for. A few years ago I was rejected in the same month for two studies, one because I was too healthy and one because I was not healthy enough.
The “too healthy” study was intended to study the effects of fish oil treatments on cognitive performance. When I had a blood draw to test my starting baseline level, OHSU found that my regular diet of fish put my measured levels of omega-3 fatty acids at the high end of what they hoped to achieve in the experimental group. Therefore, I was not eligible to participate in either the experimental group or the no-fish-oil control group.
The “not healthy enough” rejection was because I had had both prostate cancer and lung cancer surgeries within the past five years. Even though both cancers were completely removed before spreading to other parts of my body, I wasn’t considered healthy enough to participate.
Sometimes studies don’t work out. For a time I participated in a driving study that measured my stopping, starting and braking behavior, among other things. I think we eventually figured out they also were measuring the starts, stops and braking of the valet staff in the apartment complex I live in.
I am signed up for one final study. I have agreed to donate my brain to OHSU when I die, so researchers can find whatever surprises it may have for them that they didn’t anticipate from the various studies I have served in.
Oh? You really wanted to know about sleeping in an MRI machine after all? There is not much to tell because I was asleep.
I stayed awake all night before arriving to my early morning MRI sleep test. Technicians attached 15 non-magnetic electrodes to my head to have electrical as well as magnetic resonance measures of what was going on in my brain while sleeping for a couple of hours.
Before the MRI sleep monitoring, I wore a sleep-monitoring Fitbit and kept a sleep diary for two weeks so they had a baseline measure of how I sleep.
I do hope the results of this and other studies advance the scientific understanding of how the brain works and contributes in some way to the development of treatments for Alzheimer’s disease.
If you would like information about our current trials and research participation opportunities at the Layton Center, please call our research team at 503-494-7647 or email firstname.lastname@example.org.