#endalz — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #endalz, aggregated by home.social.
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💜 This Alzheimer’s & Brain Health Awareness Month, I honor my grandmother, Doña Patria, and the millions of families affected by this disease.
➡️ Progress depends on research, prevention, early diagnosis, and the caregivers who hold everything together.
💜To every caregiver out there: you are seen, you are valued, and you are heroes.
#AlzheimersAwareness #BrainHealth #EndALZ #Caregivers #HealthEquity #Boston #Love #Dementia #Aging
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💜 This Alzheimer’s & Brain Health Awareness Month, I honor my grandmother, Doña Patria, and the millions of families affected by this disease.
➡️ Progress depends on research, prevention, early diagnosis, and the caregivers who hold everything together.
💜To every caregiver out there: you are seen, you are valued, and you are heroes.
#AlzheimersAwareness #BrainHealth #EndALZ #Caregivers #HealthEquity #Boston #Love #Dementia #Aging
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Every country, every culture, every community, and every person has an equal stake in addressing Alzheimer's disease and other forms of dementia.
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Every country, every culture, every community, and every person has an equal stake in addressing Alzheimer's disease and other forms of dementia.
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The holiday season can be hard, esp. if you are someone w/#dementia and/or a #caregiver for someone w/#dementia. #HFC has many support groups for #caregivers, inc. "Keeping Each Other Company: Caregiving & #Grief." We meet 12.17 at 11 am PT.
Please consider filling out this google doc & joining one of these groups if you are feeling sad &/or lonely. Weirdly, sometimes talking w/people you don't know is easier than confiding in people you do.
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December 17th at 11 am PT, I will be leading the last HFC support group -- "Keeping Each Other Company: Caregiving & Grief" -- of this year. The holidays can be especially hard for #caregivers & those they care for, so if you want/need a place to talk, listen, decompress, please consider joining one of the support groups offered by Seth & Lauren Miller Rogen's amazing foundation Hilarity for Charity. Here is a link:
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“I think the thing that I hope to dispel about Alzheimer’s is the reality of how hard it is,” Lauren [Miller Rogen] said. “There are many people who are lucky enough to have not been touched by it, & that’s amazing—but I hope they understand how dark it can get, how long it can last, & what it is like for a caregiver. When we don’t understand those things, we don’t strive for change & we don’t work toward making things better.”
https://lamag.com/philanthropy/hilarity-for-charity-hosts-friendsgiving/
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Johns Hopkins UP is discounting all books by 50%. Purchases over $50 get free shipping. Use discount code HCYB25.
Here is a link to the preface of my #memoir, written w/the brilliant #UCSF #neurologist Dr. Bruce Miller, Finding the Right Words: A Story of Literature, Grief, and the Brain. His explanations of how the #brain works (or w/#dementia, why it doesn't) are beautifully written & incredibly helpful to those who struggle to understand.
https://www.press.jhu.edu/books/title/12605/finding-right-words
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Today is the last day of National Family #Caregivers Month. As @TonyStark likes to remind us -- and correctly -- Kamala had a plan to help caregivers keep their loved ones at home. But people rejected that in favor of the fascist sh#tshow we have now.
Anyway, here's to my mother who took care of my father for over 15 years -- some at home; some not. A photo, my favorite of the two of them, from the happiest of days.💜
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Today is the last day of National Family #Caregivers Month. As @TonyStark likes to remind us -- and correctly -- Kamala had a plan to help caregivers keep their loved ones at home. But people rejected that in favor of the fascist sh#tshow we have now.
Anyway, here's to my mother who took care of my father for over 15 years -- some at home; some not. A photo, my favorite of the two of them, from the happiest of days.💜
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Johns Hopkins University Press is having its Holiday Sale until 12.7. 40% off all books w/discount code HHOL25 & free shipping on orders over $50.00. Hopkins publishes many wonderful books & I'm proud that my #memoir written w/#UCSF #neurologist Bruce Miller is on the health & wellness list. If you click on the link below & then click Look Inside, you can read the preface to Finding the Right Words: A Story of Literature, #Grief, and the #Brain.
https://www.press.jhu.edu/books/title/12605/finding-right-words
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For all who strive to live fully with dementia and all who offer support.
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For all who strive to live fully with dementia and all who offer support.
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The holidays are coming. If you are a caregiver of someone w/#dementia, you might find comfort in being w/others in similar situations. Here's a link to the free #HFC online support groups for #caregivers. #HFC is the foundation created by Lauren Miller Rogen & Seth Rogen in honor of her mother, Adele, who died of early-onset #Alzheimer's. I lead, "Keeping Each Other Company: Caregiving & Grief," & would be honored to see you Wednesday 11 am (PT), 11.19.
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Is there anything more to say about why we must stop dementia?
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Is there anything more to say about why we must stop dementia?
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I wrote this for #caregivers w/my friend & healthcare expert, Ilyse Veron, a while back. One thing that strikes me as important but not always top of mind is that the person w/#dementia might be having an especially difficult day b/c they are in pain, physical pain. I think we are quick to attribute symptoms to neurological deficits when sometimes the problem is bodily. It can be hard to figure out but worth trying.
https://www.ncoa.org/article/8-tips-for-alzheimers-and-dementia-caregivers/
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Words of reassurance left for an elderly lady with dementia by her daughter. A simple white board left in her sight line in her sitting room. Helped to reduce constant anxious phone calls.
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Words of reassurance left for an elderly lady with dementia by her daughter. A simple white board left in her sight line in her sitting room. Helped to reduce constant anxious phone calls.
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I just read (thank you @rwg) that Bookshop.org is having an anti-prime sale. 20% off and free shipping today and tomorrow. Local bookstores get the benefit and not the person whose billions are wreaking havoc.
Here's a link to my #memoir, written with #UCSF #neurologist, Dr. Bruce Miller.
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I just read (thank you @rwg) that Bookshop.org is having an anti-prime sale. 20% off and free shipping today and tomorrow. Local bookstores get the benefit and not the person whose billions are wreaking havoc.
Here's a link to my #memoir, written with #UCSF #neurologist, Dr. Bruce Miller.
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Hilary for Charity is an amazing foundation, dedicated to helping caregivers whose loved ones have #dementia, created by Lauren Miller Rogen and Seth Rogen. I lead a support grief-- "Keeping Each Other Company: #Caregiving and Grief" -- focused on #grief, but there are many other groups. All are free and on Zoom.
If you are sad, angry, confused, lonely, whatever, these groups provide a space to share, listen, and even take a beat for a laugh.
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Hilary for Charity is an amazing foundation, dedicated to helping caregivers whose loved ones have #dementia, created by Lauren Miller Rogen and Seth Rogen. I lead a support grief-- "Keeping Each Other Company: #Caregiving and Grief" -- focused on #grief, but there are many other groups. All are free and on Zoom.
If you are sad, angry, confused, lonely, whatever, these groups provide a space to share, listen, and even take a beat for a laugh.
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This very nice review of my #memoir w/ #neurologist Dr. BruceMiller just came to my attention. Here's a bit from the last paragraph: "This unlikely author team has Miller explain brain function in lay terms, while Weinstein shares her love of literature — a unique partnership of science & art. But despite its grim subject it’s not a downer, rather offering useful information to help fend off this dreaded disease.
https://authorlink.eboz.com/bookreview/review-finding-the-right-words-by-weinstein-miller-md-2021/
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I had to type the preface to my #memoir for a writer-in-residence application, and upon rereading it thought it said what I wanted to say -- which isn't always the case, as anyone who writes knows.
Here it is, courtesy of Johns Hopkins University Press. I hope you find it interesting and perhaps even helpful.
https://www.press.jhu.edu/books/title/12605/finding-right-words
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5 Tips for Talking with Someone Living with Alzheimer’s.
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5 Tips for Talking with Someone Living with Alzheimer’s.
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Today is my #memoir's 4th birthday. It wasn't until I wrote the preface that I realized writing the #book was my way of sitting #shiva & saying #kaddish for my father who died of early-onset #Alzheimer's. Dr. Bruce Miller, #neurologist @ #UCSF, sat shiva w/me. I will be eternally grateful.
Acknowledging that I'll never recover from how my father died has strangely liberated me to remember him (w/ and w/o the disease- I had forgotten the latter) & help others.
https://www.press.jhu.edu/books/title/12605/finding-right-words
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Dr. Bruce Miller & I were on the Nocturnists #podcast a while back. Dr. Emily Silverman has put together a wonderful & informative series of conversations covering aspects of medical care that aren't often discussed; for ex., shame, uncertainty, race. About the podcast w/me & Bruce, she writes: "[Finding the Right Words] serves as a dialogue btw. patient & doctor, literary critic & neuroscientist. A great example of narrative medicine in action."
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My #memoir about my beloved dad, Jerry, turns 4 this week. Please consider buying it from #JohnsHopkinsUP or Bookshop.org. Here is my website with links to both. #UCSF #neurologist, dear friend, and co-author Dr. Bruce Miller explains what happens to the brain when #dementia strikes. The #book has a lot to say about #grief, #neurology, and #literature, especially #MobyDick. Readers have said they have found it helpful. If you read it, I hope you do, too.
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Some ask why we dare believe there will be an Alzheimer's cure.
#Alzheimers #dementia #EndAlz #science #poetry #poetrycommunity
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Some ask why we dare believe there will be an Alzheimer's cure.
#Alzheimers #dementia #EndAlz #science #poetry #poetrycommunity
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If you watched the poignant special on Bruce Willis's #FTD and Emma Willis's experiences, and thought what Dr. Bruce Miller had to say was illuminating, you might want to check out these 2 books (one which he wrote with me).
Dr. Miller and Dr. Sturm, Mysteries of The Social Brain: Understanding Human Behavior through Science.
Dr. Miller and me, Finding the Right Words: A Story of Literature, Grief, and the Brain.
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Some modifiable risk factors re: early-onset #dementia.
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powerful reminder to those of us who do not have #Alzheimers disease or another form of #dementia to continue seeing and focusing on the whole person, to support #disabilities while respecting and embracing abilities.
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powerful reminder to those of us who do not have #Alzheimers disease or another form of #dementia to continue seeing and focusing on the whole person, to support #disabilities while respecting and embracing abilities.
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Sometimes #caregiving is about the chores: medications, money, meals, bathing, and more. But, in the quiet moments between the chores, it also can be about giving and sharing comfort, peace of mind, dignity, #kindness and love.
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Sometimes #caregiving is about the chores: medications, money, meals, bathing, and more. But, in the quiet moments between the chores, it also can be about giving and sharing comfort, peace of mind, dignity, #kindness and love.
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Research at #UCSF linking #cancer medicines with positive effects on Alzheimer's-damaged glia cells. Funded by #NIH and #NSF. The writers, implementors, and supporters of #Project2025 have lost access to these drugs that might mitigate the suffering that comes with these #diseases. Too bad, they've limited our access, too. A pox on them.
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I remember when I studied neurology for a year to write the #memoir, with Dr. Bruce Miller, about my dad's early-onset Alzheimer's, a #neurologist said that sleep is when the brain takes out the garbage that accumulates during the day. My father had terrible problems with #sleep and it was a harbinger of something very wrong. If you are having sleep difficulties, they may mean you need a CPAP; it may mean something else. But don't ignore it.
https://www.yahoo.com/news/scientists-discovered-alzheimers-warning-sign-140000737.html
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On Wednesday, July 23rd from 5 pm to 6:30 pm, I will be leading a caregiver support group at Kensington Place in Redwood City. It is open to everyone. If you are in the area and would like a space to share your experiences of #caregiving for a loved one with #dementia or listen to others', please RSVP and come.
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#Poetry to raise awareness that even after death takes those most precious to us, they live on through our memories of love.
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The community of people facing #Alzheimers disease and related forms of #dementia is heterogeneous. We need support, care, solutions, and respect for all. Our community is a safe space for all.
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A brilliant reminder to focus on the person, not solely the bodily maladies.
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Deepest gratitude to every researcher striving to reach our shared dream of a world without #Alzheimers and other forms of #dementia.
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Ladies and gentleman, meet the pro-dementia party. If Congress passes #Trump's big, hideous bill, 96% of #Alzheimer's research projects would have to be rejected.
If you know someone with #dementia, if you love someone with #Alzheimer's, call your Congresspeople and tell them you have enough cognitive reserve to remember how they vote.
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The Alzheimer's Association speaks out against #RFK's dangerous, false, insulting, cruel statements: "On behalf of the over 7 million Americans living w/Alzheimer’s, the Alzheimer’s Association is calling on Sec. Kennedy to stop spreading these harmful Alzheimer’s myths, & preserve the nation’s investment in Alzheimer’s research so we can accelerate, not stop, scientific progress on diagnosis, prevention, treatments, & eventually cures."
https://www.alz.org/news/2025/kennedy-harmful-myths-alzheimers-dementia-research
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Here is a review of my #memoir about my father's early-onset #Alzheimer's & the unbearable grief of watching a loved one die of #dementia. #Neurologist Dr. Bruce Miller wrote it w/me & explains the brain health (or sickness) behind the clinical presentations I saw: word-finding difficulties, spatial disorientation, behavioral anomalies, memory loss. The 1st chapter is on diagnosis. If this resonates, I am sorry. Readers have said the book has helped. https://bookshop.org/shop/WeAreHFC
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"#Alzheimers is relentless, and we as advocates, must be as well."
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My #website went live yesterday and I want to share it (again) because I'm so pleased with how it came out. There are links to some of the #dementia outreach presentations I've done, as well as some very pretty images. Hope you take a look and like!
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As part of Dowder’s Caps Care Community Award, @[email protected] and Dowd’s Crowd will be donating $10,000 to both @[email protected] and @[email protected].
The donation will continue to help make the sport more inclusive, and honor his dad, Alan, who was diagnosed with Alzheimer’s in 2020.
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The "prodromal" phase of #Alzheimer's can last 15-20 years; that is, the brain is being invaded -- slowly -- before clinical presentations appear (for example, word-finding; memory; spatial disorientation). Check out this explanation of a new blood test whose predictive accuracy seems extraordinary. @erictopol also discusses the benefits of intervening early and addressing #modifiableriskfactors .
Thank you @cobalt for directing me to this article.
https://erictopol.substack.com/p/the-breakthrough-blood-test-for-alzheimers
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Keeping Each Other Company is the monthly grief support group I lead, thanks to #HFC (Lauren Miller Rogen and Seth Rogen's foundation established in honor of Lauren's mother who died of early-onset Alzheimer's). We meet next week. If you are or were a #caregiver to someone w/#dementia & would like a space to share your feelings &/or hear others' share theirs, please use this google doc & HFC will match you with the group that fits your needs best.
https://docs.google.com/forms/d/e/1FAIpQLSeU6Waw5K_qdJ2AvowQwjNUORcAus16weFE2AsLpxYtCvrR9w/viewform
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Today's cuts to #Alzheimers research coming up in Booker's filibuster. -- Thank you Senator #Cortez-Masto of Nevada for sharing the story of your grandmother who died of Alzheimer's. As you say, this is personal.
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Beautiful, gut-wrenching #poetry.
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I am leading a monthly grief support group "Keeping Each Other Company: #Caregiving and #Grief" over Zoom for #HFC, the foundation established by Lauren Miller Rogen & Seth Rogen in honor of Lauren's mother, Adele, who died of early-onset #Alzheimer's. If this is something you think might be helpful, just fill out the the form below & and someone from HFC will reach out. If the group I am moderating isn't the right fit, you will see many other options. 💜
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It was an honor to be a panelist on #Dementia Stories for Impact: Dementia Life Course and Storytelling, sponsored by the #AlzheimersAssociation and #UCSF. My fellow authors and colleagues talked about the importance of #narrative, #empathy, #brain health, and Dr. Bruce Miller and I talked about our work together on my #memoir, Finding the Right Words: A Story of Literature, Grief, and the Brain. I hope you find this discussion helpful.