A brutal diagnosis of Alzheimer’s disease has led to US neurologist Dr Daniel Gibbs participating in five clinical trials, coauthoring a case report on his atypical reaction to an amyloid aggregate‐targeting antibody, and writing a memoir.
In a compelling Perspective piece in JAMA, Dr Gibbs said he has also become an advocate for early diagnosis of Alzheimer’s.
“That’s the banner I’m carrying right now. When I started practicing neurology in 1989, there was absolutely nothing that we could do for Alzheimer disease. There were no medications.”
However there is much more that can be done now including medication and lifestyle changes to at least to slow disease progression, he said.
“I’ve become a zealot about trying to move the conversation of Alzheimer from the late-stage demented person who is in a nursing home to the earliest stages before there are any cognitive symptoms, because that’s when intervention could help.”
Dr Gibbs retired in 2013 before the disease compromised his ability to practice safely. However he is still reading, writing and attending virtual neurology grand rounds.
“I probably have a fair amount of cognitive reserve that I’m running off of right now. But I’m not doing this to help myself. I’m really trying to help my children’s generation, because I think there’s a real chance that we’ll have something that will make a major impact on their disease.”
Rather than supporting the adage that ‘physicians make the worst patients’, he describes the diagnosis and management of his disease as more of an intellectual curiosity.
“Being a neurologist, I’m able to study my own disease, and that has been a coping mechanism. I’ve been able to intellectualise the changes that are going on in my brain. You know, I’ve seen all my scans, and that provides a way of stepping back and having another view of myself that’s not particularly frightening.”
Dr Gibbs said the earliest clues to his diagnosis – some 15 years ago – were loss of smell and then olfactory hallucinations. Later, during DNA testing for genealogical purposes, he was shocked to find he carried two copies of the APOE4 allele, which put him at increased risk of Alzheimers.
A first amyloid PET scan in 2015, as part of a research study, confirmed the diagnosis.
“So, I was actually very much wearing the hat of a scientist at that time, which was quite therapeutic in helping me ignore the fact that I was due to have major problems in the future from Alzheimer disease.”
The title of Dr Gibb’s memoir A Tattoo on my Brain references both the haemosiderin still staining his brain after a bleed due to a treatment-related adverse event and a more figurative reflection on showing rather than hiding the disease.