Over the years I’ve participated in a number of research studies related to Parkinson’s disease. In fact, I encourage everyone with PD to sign up with the Michael J. Fox Foundation’s “Fox Trial Finder,” which matches you with relevant research trials that you can take part in if you want.
I’m currently participating in a massive longitudinal study, whereby once or twice a year I visit a university research hospital in New York City, where I undergo a day and a half of cognitive testing, one set of physical exams when I’m off my meds and a second set later when I’m back on, and a PET scan. I fully support this project, except for what happened when I was being tested there last week.
It was during the cognitive testing, which lasted an hour or longer. Among other things, I had to repeat long strings of numbers back to the examiner; repeat other long strings of numbers but in reverse order; repeat longer and longer sentences back word for word; copy geometric drawings; and so on.
At one point, the researcher put a spiral-bound booklet in front of me and said, “I’m going to show you this page by page. On each page is a drawing of something, and I want you to identify what the object is.”
Sounds easy enough. I’ll replicate some of this below, using drawings I pulled from the Internet. I don’t remember exactly the order they were in, but it was something like this:
To which I said, “Bird.”
To which I said, “House.”
To which I said, “Chair.”
To which I said, “Tree.”
The exam proceeded with more innocuous items like these.
Then the researcher turned the page and I saw:
I was stunned. The first word out of my mouth was “Whoa!” Was this item included to throw test takers off balance? I believe it did for me. I said the word “Noose,” and the examiner turned the page for a few more items, including:
“Compass.”
“Protractor.”
I was already edgy at the start of this visit – after all, over time the researchers are documenting my physical decline and mental descent into dementia, and if you go to, say, the New York Times’ web page and search the word “Parkinson’s,” you get a lot of obituaries mixed in with the positive news about PD research. You also get articles on famous people who have PD, like Linda Ronstadt, Alan Alda, George Bush, and Robin Williams, who died of asphyxia after he hanged himself with a noose in his bathroom.
I can’t say for sure whether the image of the noose affected how I performed for the rest of the day’s research procedures. I thought it was wrong, but I left without saying anything to the research team.
Then, two nights later, I woke up from a nightmare in which there was a mass public hanging going on, and I was in the line to be hanged next. The image in the dream recreated photos from years
So what did I do? In retrospect, my reaction seems knee-jerk. Nonetheless, I dashed off an email to the researcher coordinating the study. I’ll print it here, with the names and other identifying words changed.
Hi Jim,
I’m writing to withdraw my participation in the PD-BIOM research project, based on one of the cognitive test items I was shown on Friday.
The item was part of a bunch of simple black-and-white line drawings of various objects, each on a page of its own. My task was to name each item when the researcher turned the page. It started out innocuous (house? bird? tree? chair? – I can’t recall exactly), and then the page turned to a picture of a noose. I was shocked and surprised, and my first response was to say “Whoa!” Then I said the word “noose” and the test continued up to the last picture, a protractor.
The picture of the noose put me on edge, and I think for the rest of the day I was more hyper than usual.
Then last night I woke up from a dream involving a public hanging of multiple people – in the dream I was worried because I was waiting in line to go next. The scene was somewhat like this story a few years ago of two teenagers in Iran who were hanged in Iran for being gay. (I’m gay myself.) You may have seen the pictures before, and here’s the coverage from the Advocate, a gay magazine:
https://www.advocate.com/world/2016/8/05/teen-executed-gay-sex-iran-latest-long-trend
I think it’s unethical to include a picture of an object that could frighten people. I also think it throws your data off: if some people are not bothered by the picture, they’ll continue with the rest of your research activities unscathed. But if other people become nervous or agitated, their behavior, feelings and thought processes might change. For example, who can say if their trembling arm is due solely to PD or partly because they’re now anxious? Furthermore, after they leave your office, they may experience some kind of negative repercussions that they wouldn’t have to go through otherwise, such as the nightmare I had last night.
Sincerely,
Bruce
This set off a string of emails between the lead researcher and me, which I’ll paste here with camouflaged names:
Dear Mr Ballard,
Thanks so much for contacting my team about this issue with the testing. As lead investigator I want to say I’m aghast and cannot apologize enough that our testing subjected you to this image. I can only begin to imagine the distress, and absolutely take to heart the effects this image can have (especially in light of the terrible event you noted from the Advocate).
Dr Britmore is going to remove this testing item. I want to let you know that we’re really grateful you pointed this out. I think removing it will be an improvement for people to get tested in the future.
I also want to thank you for participating in the study. Without people who devote their time as you did, and volunteer information, there will be no progress.
With thanks for your involvement, thanks for drawing this to our attention, and profound apologies for the distress from this particular piece of the testing. And if you’d like to touch base by phone I’d be happy to do so.
Amy Swanson, MD DPhil
I responded later that day:
Dear Dr. Swanson,
Thank you for your email. You were very kind to write back so quickly on a Sunday, and I appreciated your message.
Please tell Jim that I’ll stay in the PD-BIOM program, and that he should go ahead and schedule me for the upcoming PET scan.
I’ve participated in many clinical trials that the Fox Foundation paired me up with. I’m happy to still be part of yours.
Cordially,
Bruce Ballard
I then got this return email from Dr. Swanson:
Dear Mr Ballard,
You are generous and thanks so much for your decision. Again, I think it’s really important you pointed this out to us.
Best regards, and I truly thank you for being a part of this research project.
Amy
This flurry of emails seemed to put the matter at rest. Perhaps I overreacted; in
Update 1: I sent a link to this blog post to the research team. Dr. Swanson responded thus:
Hi Bruce,
Thanks for the update. Once again I’m sorry you suffered from this. I also now have difficulty getting that image out of my head – truly disturbing!
Amy
Which proves my point. Apparently, I couldn’t get that image out of my head, either, even though I hadn’t seen it for years.
Update 2: About a week later, Burberry had one of its models wear a sweatshirt-and-noose in a fashion show; click here for some of the outrage. And click here for my follow-up post.
