#endalz — Public Fediverse posts

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.

https://docs.google.com/forms/u/0/d/e/1FAIpQLSeU6Waw5K_qdJ2AvowQwjNUORcAus16weFE2AsLpxYtCvrR9w/viewform?pli=1&authuser=0

@caregivers
#EndAlz

“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/

#EndAlz
#HFC
@caregivers

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

#EndAlz

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

#EndAlz
@caregivers

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.

https://wearehfc.org/support-groups/

#EndAlz
#Care

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.

https://bookshop.org/p/books/finding-the-right-words-a-story-of-literature-grief-and-the-brain-cindy-weinstein/c3c320f0c7d8affc?ean=9781421441269&next=t

#endAlz

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/

#EndAlz

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

#EndAlz

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.

https://www.professorcindy.com/

#EndAlz

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.

https://www.press.jhu.edu/books/title/12605/finding-right-words#:~:text=The%20moving%20story%20of%20an,her%20father's%20death%20from%20Alzheimer's.&text=In%201985%2C%20when%20Cindy%20Weinstein,with%20early%2Donset%20Alzheimer's%20disease.

#EndAlz
#Caregiving

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

#EndAlz

Honored that #HFC is highlighting this clip & recommending my memoir: "If you’ve ever felt lost in the language of a dementia diagnosis, this one’s for you. 🧡📖 ‘Finding the Right Words’ by Cindy Weinstein is part memoir, part guide—created to help caregivers make sense of the medical terms & complex realities that come with Alzheimer’s. A must-read for anyone looking to understand the emotional & clinical sides of this disease."

https://www.youtube.com/watch?v=EC9FxjqU_uk

#EndAlz
#LaurenMillerRogen
#SethRogen

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

#EndAlz
#Caregiving

The Doctor's Bookshelf (a blog of books every doctor should read, courtesy of Dr. Ibrahim Imam) lists Finding the Right Words: A Story of Literature, Grief, and The Brain, written by me and #UCSF #Neurologist Dr. Bruce Miller, as one of the Ten Incredibly Moving Patient #Memoirs about the Brain.

https://thedoctorsbookshelf.com/2023/02/11/the-most-incredibly-moving-patient-memoirs-about-the-brain/

#Neurology
#Caregiving
#EndAlz

This Wednesday, May 21 from 11 to 12 PT, I'll be leading the monthly #HFC caregiver group on #grief. It's called "Keeping Each Other Company." If you are a #caregiver for someone with #dementia, or if you aren't but feel the grief of losing someone about whom you care, please join. Here is the google doc to sign up and get matched with the caregiver group that best fits what you need. It may be the one I lead, it may not. Either way, it may help.💜

https://docs.google.com/forms/d/e/1FAIpQLSeU6Waw5K_qdJ2AvowQwjNUORcAus16weFE2AsLpxYtCvrR9w/viewform?pli=1

#caregiving
#EndAlz

Out of their pain, Lauren Miller Rogen and Seth Rogen have given us such a gift. #HFC, a foundation created in honor of Lauren's mother, Adele, who died of early-onset Alzheimer's. I am so glad to see their work recognized by Time Health 2025.

https://time.com/collections/time100-health-2025/7279589/seth-rogen-lauren-miller-rogen/?filters=catalysts

#EndAlz

The memoir I wrote with #UCSF #neurologist, Dr. Bruce Miller, Finding the Right Words: A Story of Literature, Grief, and the Brain is now available through the HFC website. Please check out the bookshop and see the other books on #caregiving and #brain health. Thank you to #LaurenMillerRogen and #SethRogen for your advocacy and profound generosity.

https://bookshop.org/shop/WeAreHFC

#EndAlz

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.

#EndAlz
#Caregiving

https://docs.google.com/forms/d/e/1FAIpQLSeU6Waw5K_qdJ2AvowQwjNUORcAus16weFE2AsLpxYtCvrR9w/viewform

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.

#EndAlz
#Caregiving

https://docs.google.com/forms/d/e/1FAIpQLSeU6Waw5K_qdJ2AvowQwjNUORcAus16weFE2AsLpxYtCvrR9w/viewform

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.

#EndAlz
#CoryBooker

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.

#EndAlz
#CoryBooker

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. 💜

https://docs.google.com/forms/d/e/1FAIpQLSeU6Waw5K_qdJ2AvowQwjNUORcAus16weFE2AsLpxYtCvrR9w/viewform?pli=1

#EndAlz

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. 💜

https://docs.google.com/forms/d/e/1FAIpQLSeU6Waw5K_qdJ2AvowQwjNUORcAus16weFE2AsLpxYtCvrR9w/viewform?pli=1

#EndAlz

This Wednesday at 2pm ET/11 am PT, I'm honored to be leading the inaugural monthly support group -- "Keeping each other Company: #Caregiving and #Grief" -- for #HFC, an extaordinary foundation established by #LaurenMillerRogen & #SethRogen in honor of Lauren's mother Adele who died of early-onset #Alzheimer's. Please join me -- it's on Zoom -- if you are looking for a space to share your feelings, tell your story, or just want to listen to others.

#EndAlz

This Wednesday at 2pm ET/11 am PT, I'm honored to be leading the inaugural monthly support group -- "Keeping each other Company: #Caregiving and #Grief" -- for #HFC, an extaordinary foundation established by #LaurenMillerRogen & #SethRogen in honor of Lauren's mother Adele who died of early-onset #Alzheimer's. Please join me -- it's on Zoom -- if you are looking for a space to share your feelings, tell your story, or just want to listen to others.

#EndAlz

A HS student emailed me out of the blue to do an interview as part of her capstone project on #Alzheimer's. I spoke w/her about #brain science & #caregiving. She's 18, her family has the #APOE4 gene - a risk factor for the disease - & she will study neuroscience to find a cure for Alzheimer's. She's smart, determined, & I had chills listening to her story and her passion. The senseless, fascistic #NIH cuts are imperiling the potential, the future of people like her, & our own.

#EndAlz
#USPol

A HS student emailed me out of the blue to do an interview as part of her capstone project on #Alzheimer's. I spoke w/her about #brain science & #caregiving. She's 18, her family has the #APOE4 gene - a risk factor for the disease - & she will study neuroscience to find a cure for Alzheimer's. She's smart, determined, & I had chills listening to her story and her passion. The senseless, fascistic #NIH cuts are imperiling the potential, the future of people like her, & our own.

#EndAlz
#USPol

Here is an announcement about the new grief support group I'll be leading for #HFC. The 1st meeting is on 3.19 at 2 pm ET, 11 am PT. Click enroll & sign up if you want to talk about your grief or listen to others share theirs. My experience comes from my father's early-onset #Alzheimer's. He was diagnosed in his mid 50s & died 15 years later. Looking back, he was sick well before then (the #prodromal phase). How I wish I knew then what I know now. I'll share this & more.

#EndAlz
#Caregivers

Here is an announcement about the new grief support group I'll be leading for #HFC. The 1st meeting is on 3.19 at 2 pm ET, 11 am PT. Click enroll & sign up if you want to talk about your grief or listen to others share theirs. My experience comes from my father's early-onset #Alzheimer's. He was diagnosed in his mid 50s & died 15 years later. Looking back, he was sick well before then (the #prodromal phase). How I wish I knew then what I know now. I'll share this & more.

#EndAlz
#Caregivers

Tomorrow at 12 to 3 pm PT, 3 to 6 pm ET is HFC CareCon 2025. #HFC is the foundation created by #LaurenMillerRogen & #SethRogen in honor of Lauren's mother Adele, who died of early-onset #Alzheimer's. Please register if you are a #caregiver, know a loved one with #dementia, and/or want to have a laugh (it is Seth Rogen after all!). I will be on the panel, "End of Life but not the End of Love."

Here's the link.
https://www.donatehfc.com/event/hfc-carecon-2025/e634286?utm_source=social%20media&utm_medium=social%20media&utm_term=carecon

#EndAlz
#Grief

#HFCCareCon2025 is this Friday, 12-3 pm PT; 3-6pm ET. It's going to be helpful, thoughtful, authentic, & even funny (at times). I am honored to be on the panel, "End of Life but not the End of Love." I am also so grateful to #LaurenMillerRogen and #SethRogen for sharing their story (watch their documentary about Lauren's mother, Adele, #TakingCare) & using their power to help #caregivers & to educate the public about the facts of #dementia. The event is free.

https://www.donatehfc.com/event/hfc-carecon-2025/e634286?utm_source=social%20media&utm_medium=social%20media&utm_term=carecon

#EndAlz

#HFCCareCon2025 is this Friday, 12-3 pm PT; 3-6pm ET. It's going to be helpful, thoughtful, authentic, & even funny (at times). I am honored to be on the panel, "End of Life but not the End of Love." I am also so grateful to #LaurenMillerRogen and #SethRogen for sharing their story (watch their documentary about Lauren's mother, Adele, #TakingCare) & using their power to help #caregivers & to educate the public about the facts of #dementia. The event is free.

https://www.donatehfc.com/event/hfc-carecon-2025/e634286?utm_source=social%20media&utm_medium=social%20media&utm_term=carecon

#EndAlz

"Even more troubling to many researchers is a pause on study sections that many received word of today. Without such meetings, NIH cannot make research awards."

The #NIA (National Institute on Aging) is an arm of the #NIH. #Research on #dementia is now on pause. The dementia affecting our loved ones is not.

https://www.science.org/content/article/trump-hits-nih-devastating-freezes-meetings-travel-communications-and-hiring

#EndAlz

"Even more troubling to many researchers is a pause on study sections that many received word of today. Without such meetings, NIH cannot make research awards."

The #NIA (National Institute on Aging) is an arm of the #NIH. #Research on #dementia is now on pause. The dementia affecting our loved ones is not.

https://www.science.org/content/article/trump-hits-nih-devastating-freezes-meetings-travel-communications-and-hiring

#EndAlz

Thank you dear reader for this kind & generous review of Finding the Right Words: A Story of Literature, Grief, & the Brain, the #memoir I wrote with #UCSF #neurologist, Dr. Bruce Miller in honor of my father who died of #early-onset #Alzheimer's. For people interested in reading other books about #dementia, I would recommend #DashaKiper's Travelers to Unimaginable Lands, #SandeepJauhar's My Father's Brain, & #AmyBloom's In Love.

#AlzheimersAwareness Month
#EndAlz
#Caregivers
#Grief

How sad how this resonates. Looking back and realizing your loved one's disease was in the #prodromal phase. My father's early-onset #Alzheimer's began with hearing loss, too.

"As Bruce declines, his family is realizing that the signs were there earlier than they realized. “Something was wrong for a long time,” Tallulah admitted last year. “It started out with a kind of vague unresponsiveness, which the family chalked up to Hollywood hearing loss."

https://www.yahoo.com/entertainment/bruce-willis-family-worries-may-134732695.html

#EndAlz
#EndFTD

How sad how this resonates. Looking back and realizing your loved one's disease was in the #prodromal phase. My father's early-onset #Alzheimer's began with hearing loss, too.

"As Bruce declines, his family is realizing that the signs were there earlier than they realized. “Something was wrong for a long time,” Tallulah admitted last year. “It started out with a kind of vague unresponsiveness, which the family chalked up to Hollywood hearing loss."

https://www.yahoo.com/entertainment/bruce-willis-family-worries-may-134732695.html

#EndAlz
#EndFTD

We can’t end #Alzheimers just yet, but we can #EndStigma.

(image: @LEAD_Coalition) #dementia #EndAlz #quote

#JohnsHopkinsUniversityPress's #July4th sale ends Monday. If you want some great #books about #health and #wellness, #litcrit, et al., check out the website. H4JUL24 is the discount code that will give you 40% off all #books with free shipping on order over $75. Please consider purchasing the #memoir I wrote with #neurologist Dr. Bruce Miller. It's about my father's early-onset #Alzheimer's, a rare form of #dementia. It's also about #grief, #love, & #neurology.

#EndAlz

https://weinsteinandmiller.com

#JohnsHopkinsUniversityPress's #July4th sale ends Monday so if you're looking for great #books about #health & #wellness, #litcrit, et al., check out the website. H4JUL24 is the discount code that provides 40% off all #books w/free shipping on orders over $75. Please consider purchasing the #memoir I wrote with #neurologist Dr. Bruce Miller. It's about my father's early-onset #Alzheimer's, a rare form of #dementia. It's also about #grief, #love, and #neurology.

#EndAlz

https://weinsteinandmiller.com

Today is the last day of #Alzheimer's & #Brain Awareness month. If you want to read about #dementia, consider #SandeepJauhar's My Father's Brain, #DashaKiper's Traveler's to Unimaginable Lands, #AmyBloom's In Love. Finding the Right Words, my #memoir, written w/#neurologist Dr. Bruce Miller, is about my father's #early-onset Alzheimers. We wrote it to share info. about #neurology, the challenges of #caregiving, & how brutal the #grief can be.

Remembering my dad today and everyday.
#EndAlz

Today is the last day of #Alzheimer's & #Brain Awareness month. If you want to read about #dementia, consider #SandeepJauhar's My Father's Brain, #DashaKiper's Traveler's to Unimaginable Lands, #AmyBloom's In Love. My #memoir, written w/#neurologist Dr. Bruce Miller, is about my father's #early-onset Alzheimers. We wrote it to share info. about #neurology, the challenges of #caregiving, & how brutal the #grief can be. If you feel alone, these books may help. #EndAlz

https://weinsteinandmiller.com

An incredibly kind & generous review of #FindingTheRightWords, the #memoir I wrote w/#neurologist Dr. Bruce Miller to honor my father, Jerry, who died of early-onset #Alzheimers. Thank you dear reader. Sending you strength.

June is Alzheimer's & Brain Health Awareness Month. Be good to your #brain. Sleep well, eat right, don't ignore hearing issues or what may be depression, exercise, & play with friends (social isolation is a modifiable risk factor, actually all these things are).

#EndAlz

June is #Alzheimer's and #Brain Health Awareness Month. After I wrote my #memoir with #neurologist Dr. Bruce Miller, I was invited to write a column for the #WSJ -- Five Best Books on Grief. I chose #Didion's The Year of Magical Thinking, #Morrison's Beloved, #Zauner's Crying in H Mart, Macdonald's H is for Hawk, and for good measure a poem, #Ginsberg's Kaddish. Here is my brief reflection on #Zauner. You are not alone in/with your #grief. #EndAlz

June is #Alzheimer's and #Brain Health Awareness Month. After I wrote my #memoir with #neurologist Dr. Bruce Miller, I was invited to write a column for the #WSJ -- Five Best Books on Grief. I chose #Didion's The Year of Magical Thinking, #Morrison's Beloved, #Zauner's Crying in H Mart, Macdonald's H is for Hawk, and for good measure a poem, #Ginsberg's Kaddish. Here is my brief reflection on #Didion. You are not alone in/with your #grief. #EndAlz

Don't casually use the word '#dementia' when talking about Biden, Trump https://newarkadvocate.com/story/news/local/granville/2024/03/07/knapsack-dont-casually-say-dementia-when-talking-about-biden-trump/72781405007/

#EndStigma #EndAlz #Alzheimers

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."

https://www.yahoo.com/news/silent-brain-changes-precede-alzheimers-221628452.html

#EndAlz

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."

https://www.yahoo.com/news/silent-brain-changes-precede-alzheimers-221628452.html

#EndAlz

We can’t end #Alzheimers just yet, but we can #EndStigma.

(image: @LEAD_Coalition) #dementia #EndAlz #quote

The videos of #Trump's attempts at speech are making me think even more about #language acquisition and #degeneration. How I would love a #neurologist to do a close reading of his sentences -- the #repetition, the frequent absence of #grammar, whatever stands out. Anyway, here is another image of the brain from #FindingTheRightWords. Thank you to the amazing #CarolinePrioleau of #UCSF for this beautiful and helpful drawing.

#EndAlz