I will be in #NYC at the #Alzheimer's Association to discuss "The Alzheimer's Journey: #Grief, #Guilt, #Memory, Love." It is a hybrid event (on line and in-person) that will take place on August 20th from 1 to 2 pm.
"Don't think of people with #dementia as not having abilities. They have an ability to feel and interact and we need to try and enter into their world."
@Rana. thank you for these kind words and I am very sorry we have this in common. My father died of early-onset Alzheimer's many years ago. Recovering from those horrors is the work of a lifetime. Take care of yourself and feel free to reach out. Sometimes sharing with a stranger is easier. . .
Honored to keep company with #neurologist, #DanielGibbs's #book about his own experience of #dementia. The tattoo in the title is the #brain bleed (aka #ARIA) that occurred while in #clinicaltrials related to anti-#amyloid drugs. He has no regrets & would do it all over again if it might advance brain science & help in the effort to #ENDALZ.
If you have read either my #memoir or his, please consider reviewing them on #amazon. In different ways, we both aim to inform readers & undercut #stigma.
Remembering the #Congresspeople who blocked #Biden's plan to help #caregivers. "Families & other caregivers take on an array of tasks, scheduling appts & feeding & caring for people w/#Alzheimer's or #dementia. The report said 11.5 million relatives & caregivers provided more than 18 million hours of unpaid care last year. That amounted to a full-time job for caregivers who spent an avg. of nearly 31 hours a week caring for a person w/Alzheimer's or dementia."
The paper is called
Temporal Association between COVID-19 Infection and Subsequent New-Onset Dementia [NOD] in Older Adults: A Systematic Review and Meta-Analysis
(The Lancet preprint Feb. 6, 2024) https://papers.ssrn.com/sol3/papers.cfm?abstract_id=4716751
from the abstract:
Cognitive impairment was nearly twice as likely in COVID-19 survivors compared to those uninfected
Female[s] had a significantly higher risk of developing NOD in the COVID-positive group
but then they say
"This risk [of NOD in people 60+] appears to be on par with that associated with other respiratory infections."
Really? Is it really though? And why did they feel the need to say that? And what about the risk for <60? I bet it's MUCH higher in the under 60s. Generalizing based on personal experience.
@craig_groeschel. When I read this article, I wondered about that same thing: why did they feel the need to say that? I am so very sorry you speak from personal experience. As a daughter who lost her father to #early-onset Alzheimer's, I will wear a mask to the end of (my) time if it will offset the onset.
#neurologist Jeffrey Cummings said this about the #memoir I wrote with #Dr.BruceMiller: "A book that brings humanity and science together is rare, but Finding the Right Words achieves this seamlessly and elegantly. Biography, diagnosis, history of behavioral neurology, and a daughter's love converge to produce a deep understanding of how brain disease affects personhood. Read this book to understand how your brain creates your self."
Since word-finding (and losing words) is front of mind for many people, I would like to draw your attention to the #memoir I wrote with #UCSF#neurologist, Dr. Bruce Miller. It's called Finding The Right Words: A Story of Literature, Grief, and the Brain, and it is about my father's #early-onset #Alzheimer's. #Dr.Miller explains the #neurology behind the manifestations of the #disease that I describe. Loss of words was one of my father's first symptoms.
Easier said than done, esp. when a person (who is trying to be clear!) has #MCI or #dementia. "If you’re noticing more worrisome cognitive gaps, talk to your dr. & make it clear that getting answers is a priority. “If you go in and say, ‘I have the following 20 problems, and memory loss is no. 7,’ it’s just not going to work,” Weisman said. If you feel your dr. isn’t taking your worries seriously, consider consulting a geriatric psychiatrist or neurologist."
What is known as the #prodromal phase, the years when #Alzheimer's is attacking the brain but the clinical presentations may not yet be apparent. "One early hallmark is that sticky protein called beta-amyloid, which over time builds up into brain-clogging #plaques. #Amyloid alone isn’t enough to damage memory — plenty of healthy people’s brains harbor a lot of plaque. An abnormal #tau protein that forms neuron-killing tangles is one of several co-conspirators."
What is known as the #prodromal phase, the years when #Alzheimer's is attacking the brain but the clinical presentations may not yet be apparent. "One early hallmark is that sticky protein called beta-amyloid, which over time builds up into brain-clogging plaques. Amyloid alone isn’t enough to damage memory — plenty of healthy people’s brains harbor a lot of plaque. An abnormal tau protein that forms neuron-killing tangles is one of several co-conspirators."
Why diagnose someone with #Alzheimer's who has no memory issues but a build-up of #tau and/or #amyloid protein? Here's why. In a Nov, call with Wall St. analysts, Masoud Toloue, the chief executive at Quanterix, pointed out that the company’s blood test for tau — p-Tau 217 — had been recommended by the panel for diagnosing the disease. “We believe we’re in a strong position to capitalize on these opportunities,” Toloue said. "Opportunities"? Sickening.
@cobalt. I know! I didn't have room to add this data point from the article but I think it's really important. "A 60-year-old man who tests positive, for example, is estimated to have a 23% risk of developing dementia in his lifetime."
It's #NationalCaregiversDay. Remembering all the care and love my mom gave to my dad. He got sick so young and was sick for so long that it broke all of our hearts. My mother's most of all. She loved him and cared for him with everything she had. Here is one of my favorite photographs of them when they were just starting their lives together.
2/1 #writerscoffeeclub Tell us about yourself, your published work, your WIP, or anything you think we should know about.
My current WIP is a nonfiction account of the year my dad, who had Alzheimer’s, lived with us. I started it several years ago during a brief time when I wasn’t working and made a fair amount of progress, but set aside when I began working full time. I began writing again at the beginning of this year. I’m close to finishing the first draft. I’d like to try and get it published, that being said, I have never published anything, so I’ve been researching and looking for places that accept submissions. There’s a pinned post on my homepage that tells more about me, so I won’t bore you with it here. 🙂
@Likewise@jmccyoung. Lisa, my email is caw@caltech.edu. Feel free to send questions and I will do my best to answer them. If Zoom is easier, we can arrange that, too (or instead).
@Likewise@jmccyoung. Lisa, there is a book website that you might find helpful/interesting. There are some passages from the book, as well as images in color (that appear in black and white in the book). Also, you'll see links to podcasts and other events I have done (sometimes with #Dr.BruceMiller) at various institutions. Here's the link. https://weinsteinandmiller.com
Last night #UCSF was the scene of a joyous celebration in honor of #Dr.BruceMiller's parents, Milton and Harriet Miller. #Music, #art, #poetry, and #science -- especially #neurology -- filled the halls. And lots and lots of love. So honored to be there and to have the #memoir I wrote with Bruce be one of the gifts given to the people who came.
A beautiful, moving piece connecting a son's love, the devastation of #dementia, #racism, & #AI. "I fear the harshest punishment this universe gave my family was my father's gift, only for him never to have made enough money or recognition from it, while he spirals into dementia. Some of my favorite memories of my dad are the moments we spent talking about everything and nothing, him drawing and painting in his artist chair and I writing next to him on the floor." https://www.thedailybeast.com/my-dad-is-losing-his-ability-to-draw-to-dementia-thats-why-i-hate-ai-art?ref=home #EndAlz