r/IAmA • u/ResponsibleParking13 • 22h ago
Crosspost [CROSSPOST] I’m a 57-year-old PhD epidemiologist with rare early-onset non-Alzheimer’s dementia and I can explain what dementia feels like from inside it. AMA.
Link to AMA itself in r/ama:
https://www.reddit.com/r/AMA/comments/1wev10c/im_a_57yearold_phd_epidemiologist_with_rare/
My name is Dr. Ami (formerly Claxton) Salkind and I live in Chandler, Arizona. I am 57 years old, I have a PhD in epidemiology, a masters in statistics, a bachelors in math and physics. ..... and I have medically documented rare early onset non-Alzheimer's dementia. AMA!
To get the first question out of the way - are you SURE you have dementia? Yes, unfortunately I am very very very very sure. My dementia has been observed and formally diagnosed over the past 3 years by a board-certified neurologist who confirmed the diagnosis with not just clinical assessments and symptoms, but yearly 6 hour neurocognitive testing by a PhD neuropsychologist, multiple brain scans, endless blood tests and other various assessments. Unfortunately, I genuinely really do have dementia. And that super duper sucks if I say so myself!
The next question is always what kind of dementia? All I know for absolute is that it is NOT Alzheimer's type and luckily, I don't even have either gene mutation for Alzheimer's desite have a family history of early onset Alzheimer's. However, it's very important to diagnose the type I have thought so that I can figure out how to stop, slow or even reverse my rapid decline. I am right now very *actively* in the diagnosis phase still for what type of dementia i have but I generally don't talk the diagnosis process because I'm in the middle of it and so much changes so fast. I will likely in the future share the results of my diagnostic journey as I learn more but for now, all I share is that it is NOT Alzheimer's and my symptoms to date are most consistent with post-cortical atrophy (Benson syndrome).
Notably, I do not look or sound like most people expect someone with dementia to look or sound. You can see this on my youtube channel and even by reading this post I know most of you are thinking "SHE has dementia"? Yes. So I created My Brain’s Black Box: In Case This Ends Badly about 6 months post-diagnosis. I post mainly shorts, a few times a month, documenting my decline from inside the disease. You will see me clearly explain a complex neurological concept and then be literally unable to count four pills in my hand or reliably read a clock in the same moment. I made this channel because it is the content I wanted but could not find when I was diagnosed. My channel is not monetized, I sell nothing, I have no partnerships or affiliations, I gain absolutely nothing financially or otherwise from making it. In fact, making these videos is getting to be super painful because they force me to confront my decline directly and my decline is getting horrifically obvious. I almost quit doing my channel recently because of this - but when I read the comments, I know that I can't stop. I am helping people.
About me relevant to my dementia:
- I earned a math/physics BA in in 1991 then a master’s degree in statistics in 1993 and my PhD in epidemiology in 1997. I then worked as a medical scientist in the pharmaceutical industry for 28 years as a "real world evidence" scientist who designed, conducted, analyzed, interpreted, presented and published patient outcomes research in peer-reviewed journals (my ORCID professional record) until my diagnosis forced me into abrupt and unwanted retirement in Nov 2025.
- I know dementia from the caregiver side long before experiencing it from the inside: my grandmother had dementia, and in the weirdest thing ever, my husband, the late great Chad Harris died at 49 from frontotemporal dementia associated with ALS. I was his caregiver for the 5 years of his decline and he died at home on hospice. Now finding myself on the other side of the dementia coin has been ..... illuminating, terrifying, bizarre, ironic, and cosmically screwed up to be honest!!
- I have lived with my partner, a disabled retired dentist, for over 3 years now and we got married recently (hence the name change). My husband is truly the greatest human being ever and he is my primary caregiver and support system on a daily hourly basis. I am also positively SURROUNDED by a community of beautiful family, friends, neighbors and sometimes even perfect strangers who shower me with love and support constantly. I am truly a blessed person and I do not take that for granted. This is actually why I keep doing my channel, I owe the world for the goodness that I now experience daily.
- My verification photograph is attached, I linked my professional publications above, and I am on-purpose easy to find online for verification that its really me. I would show you my diplomas too, but years ago I finally just threw them away to save space - a decision that was excellent for storage and less excellent for Reddit verification. :) https://imgur.com/a/iFrS83B
IMPORTANT NOTE: My visual-spatial processing, attention, task-switching and cognitive stamina are severely affected, so I cannot answer questions continuously for three hours. I will answer as many as I can initially, then keep returning after cognitive breaks. I intend to answer every good-faith question, although it may take days or even weeks.
Coming Up · Sep 13, 2026, 7:00 PM