Philadelphia Alzheimer’s advocate Michael Ellenbogen continues his struggle to regain access to meetings and events related to his illness. Ellenbogen was diagnosed with early-onset Alzheimer’s eight years ago, and has since dedicated his time to raising awareness and garnering more resources for the disease.
He was banned from Alzheimer’s related events after writing controversial remarks to be read at a meeting of the National Alzheimer’s Project Act, which is sponsored by the U.S. Department of Health and Human Services (HHS).
The remarks read: “What do we need to do to get the attention of people like you? Will it take someone like me to have some sort of shootout like Columbine before someone will take notice? I would not do that, but I am trying to get your attention, and I am failing and dying at the same time.”
HHS considered the statement a threat, and has banned Ellenbogen from all of the agency’s events. The Alzheimer’s Association has followed suit, asking Ellenbogen to refrain from attending the organization’s events.
“That includes support groups that my wife and I attended, which is probably something drastically needed at this time,” said Ellenbogen, who has no prior record, and has apologized for his remarks.
It’s been a lonely road for him. “I don’t know what to do here, this is almost like a death sentence for me,” he said. He says emails and phone calls to change his current status have gone unanswered. “Nobody will even talk to me,” he said.
A spokesperson for the Alzheimer’s Association says the organization has offered Ellenbogen online or telephone resources, which the advocate denies.
HHS did not return requests for interviews.
Alzheimer’s experts say that Ellenbogen’s controversial remarks could be a very symptom of his illness, since early symptoms can include impulsivity and a loss of judgment.
Ellenbogen’s punishment may seem harsh, but the situation exemplifies the difficulty of threat assessment, says Mark Siegert, a forensic psychologist with the New Jersey company Threat Assessment Experts:
“What do we do for something that has a very low probability of occurring, but if it happened could have very dire consequences,” he explained.
Siebert says it’s likely law enforcement agents are keeping a watch on Ellenbogen.
The Philadelphia advocate says he plans to continue to fight the ban, and says he has individuals trying to help him, but no organization has stepped up in his support.