Washington Post article

Tau-PET scans of my brain in 2015, 2018, and 2022. The abnormal tau protein of Alzheimer’s disease shows up as yellow, orange and red coloration. Courtesy of Dr. Gil Rabinovici, UCSF Memory and Aging Center.

Today the Washington Post published my invited column titled “As a doctor, here’s what I have learned from my own Alzheimer’s disease.” I was really pleased with how it turned out.  The editing was great, enhancing rather than detracting from my key message about the importance of early management. I had pushed through the 800-word suggested limit and was well over 1000 words, so something had to go and that was the image of my tau-PET scans. Abnormal, phosphorylated tau protein is found in the intracellular neurofibrillary tangles of Alzheimer’s disease. Unlike extracellular beta-amyloid plaques that first show up in the brain as much as 20 years before the onset of impairment, the tau-containing neurofibrillary tangles first appear only a few years before cognitive trouble. My tau-PET scans were done as part of a longitudinal neuroimaging study at UCSF and the Lawrence Berkeley National Laboratory. In 2015, when I had very mild cognitive impairment, I had just a hint of tau in the temporal lobes and orbitofrontal cortex.  By 2018, and more so in 2022, the tau had spread throughout the temporal lobes, orbitofrontal cortex, and even the brainstem. By 2022, my cognitive testing was consistent with mild dementia. PET scans are not necessary for confirming a diagnosis of Alzheimer’s disease. Blood and/or CSF tests can also do this. But from a research point-of-view, they provide more information about the progression of Alzheimer’s through the brain with the passage of time.

7 Responses

  1. Valerie O'Loughlin says:

    Thank you for sharing your story. I saw your article in WaPo today and then followed the links to your blog. I am a medical educator and very much appreciate the science you are sharing along with your personal humanity. Wishing you the best.

  2. Debra Schneider says:

    Kudos! I read your article in the Washington Post today! I appreciate that you are doing your best to educate lay people, as well as other doctors. Please do look up tDCS, as it is another non invasive modality that might help some people. It certainly gave clarity to my husband!

  3. Sue Moerer says:

    Dan, I read that the other night in the WaPo – saw the title and knew it was you. Good job!

  4. Michelle in Chicago says:

    I too read your essay today in the Post. It is excellent and offers hope. Alzheimers has affected our family and my siblings are concerned whether we will get the disease. I’m on a regular exercise regimen to hopefully stave it off. I’ve wondered about the impact of diet and alcohol and I’m even more convinced about their implications. I look forward to reading your book and seeing the documentary. Thank you for all that you do.

  5. As an 82 yo retired psychiatrist who also treated patients with dementia, and who has a family history of Alzheimer’s, I read this story with interest, especially the history of baked bread hallucinations accompanied by decreased smell. The story did not specify whether the hallucinations were transient or prolonged. Most olfactory hallucinations from any cause are unpleasant, and at least visual hallucinations associated with Alzheimer’s are usually transient. I have experienced a baked bread sensation that lasted for days with no loss of smell, normal MRI and unremarkable ENT exam, and currently no loss of cognitive function.

    I would like to know more about the description of your olfactory hallucinations.

    • Dan says:

      My olfactory hallucinations, or phantosmias, started in 2007, about 8 years before I had any measurable cognitive impairment. They occurred out of the blue, without any obvious triggers, and they lasted a couple of minutes. Initially, they occurred several times a week, but as my sense of smell diminished to the point of anosmia over the next 5-6 years, the phantosmias occurred less frequently and finally disappeared completely. Phantosmias are usually foul smells, sometimes unbearably so, so I was very lucky to have pleasant ones. Loss of smell occurs in at least of people with Parkinson’s disease, and phantosmias have been reported in Parkinson’s. Loss of smell is also very coomon inpeople with Alzheimer’s, but they often don’t notice it. I am not aware of any reports of phantosmias associated with Alzheimer’s disease, but I have been approached by five people with Alzheimer’s who related their experience of having phantosmias. I suspect that phantosmias generally are not recognized. Alternatively, I sometimes wonder if I might have Alzheimer’s and Parkinson’s pathology in my brain, a combination that is not uncommon.