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#endalz

3 posts3 participants0 posts today
Public

If you are a #caregiver to someone w/ #dementia & are feeling sad, feeling nothing at all, feeling like a sympathetic ear might help, please come to "Keeping Each Other Company: #Caregiving and #Grief" today at 11 am PT, 2 pm ET. HFC has given me the opportunity to help by leading this monthly support group. Today is our 1st meeting.

Please fill out the form below and someone will be in touch once you've submitted it.

docs.google.com/forms/d/e/1FAI

Google DocsHFC Online Support Group Interest FormThanks for your interest in joining one of HFC's Online Support Groups! This unique opportunity is for caregivers of loved ones living with Alzheimer's disease and related dementias. HFC's groups are led by credentialed social workers and trained group leaders who have experience supporting dementia family caregivers. HFC support groups are FREE and most groups meet weekly. We will do our best to match you based on your availability and the information you provide below. It can take up to three weeks to fulfill your request so we thank you for your patience. PLEASE NOTE: DUE TO THE VOLUME OF REQUESTS, COMMUNICATIONS FROM HFC ARE THROUGH EMAIL! PLEASE CHECK YOUR SPAM/JUNK BOX FOR HFC EMAILS SO WE DON'T MISS YOU. If you have any questions, don't hesitate to contact us - care@wearehfc.org Para completar este formulario en español, haga clic aquí.
#EndAlz
Public

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.

Grief Support Group for Caregivers. This new online group is a space for caregivers to connect, share, and heal together. Whether you're dealing with recent loss or navigating the emotional challenges of caregiving, we're here to provide comfort and understanding along the way. The details Who: Dementia caregivers experience grief (anticipatory, normal, complicated, or cumulative) Facilitated by me, author, with Dr. Bruce Miller, of Finding the Right Words: A Story of Literature, Grief, and the Brain. When: Hosted monthly on Tuesdays at 2 pm ET/11 am PT. Click Ready to join.
#EndAlz
Public

Jerry, my dad, who died almost 30 years ago, was born today in 1927. Here I am with him -- he had lost just about all of his words and I had none to express the grief of watching him suffer. I think about him everyday, miss him so much, and do everything I can to be the best version of the person he (and my mother) raised me to be.

Jerry and Cindy both wearing gray sweatshirts holding one another.
#EndAlz
Public

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

Public

It's Brain Awareness Week. Take care of yours!

Wear a mask (COVID has implications -- bad ones -- for brain health. Get sleep (sleep rids the brain of gunk -- the vox technica - that accumulates in it). Get hearing aids if you're experiencing age-related hearing loss. Take your SSRI if you're on one (depression isn't good for the brain). Stay engaged w/ people (connected with friends; meet new ones @ #Tesla protests).

#BrainAwarenessWeek
#EndAlz

Public

Once upon a time, I asked people to review my memoir, written w/#neurologist Dr. Bruce Miller, Finding the Right Words on #Amazon to help people dealing w/#dementia: the complexities of #brain health, #caregiving, #grief. B/c #Bezos is no longer someone I can support b/c he supports #Nazis, I humbly ask you -- if you've read the book -- to review it here. Also, #NIH cuts & the evisceration of #Alzheimer's research (et al.) will immiserate all of us. Grief (& rage) are the words.

cover of Finding the Right Words: A story of literature, grief, and the brain. Top half of the cover has neurons with blue background; bottom half has picture of me as a toddler being held by my father. Snow in the background.
#EndAlz
Public

I wrote and submitted this short letter to the editor about cuts to #Alzheimer's research but the window for it being accepted has passed. I was hoping it might get picked up by the #MSM so people whose politics with whom I profoundly disagree might read it and see the damage that is being wrought by eviscerating #NIH -- if they can't understand its implications for others perhaps they could for themselves and their loved ones. Please share as you see fit.

#EndAlz
#NIH
#RFK
#USPol

Every 3.2 seconds, someone is diagnosed with dementia (Alzheimer’s Disease International).Recently, DOGE cut the research staff of CARD, the Center for Alzheimer’s and Related Dementias, who work to alleviate the devastation wrought by dementia. Russell Vought, do you know anyone with dementia? How about you, Elon Musk? Robert Kennedy Jr? You do. Sargent Shriver had Alzheimer’s. Donald Trump? You do. Your father. I do. My father lived with early-onset Alzheimer’s and died at 70 after 15 years of suffering. According to the Alzheimer’s Association, 7 million Americans have an Alzheimer’s diagnosis. 55 million people, in 2020, worldwide. Medicines are available that may temporarily delay the progression of symptoms until the disease marches on. Russell, Elon, Robert, Donald: you understand that in eviscerating funding that might alleviate the pain of those you love, perhaps even your pain, you have given up your right to access scientific discoveries that might help you remember what and who you forget.
Public

I wrote and submitted this short letter to the editor about cuts to #Alzheimer's research but the window for it being accepted has passed. I was hoping it might get picked up by the #MSM so people whose politics with whom I profoundly disagree might read it and see the damage that is being wrought by eviscerating #NIH -- if they can't understand its implications for others perhaps they could for themselves and their loved ones. Please share as you see fit.

#EndAlz
#NIH
#RFK
#USPol

Every 3.2 seconds, someone is diagnosed with dementia (Alzheimer’s Disease International).Recently, DOGE cut the research staff of CARD, the Center for Alzheimer’s and Related Dementias, who work to alleviate the devastation wrought by dementia. Russell Vought, do you know anyone with dementia? How about you, Elon Musk? Robert Kennedy Jr? You do. Sargent Shriver had Alzheimer’s. Donald Trump? You do. Your father. I do. My father lived with early-onset Alzheimer’s and died at 70 after 15 years of suffering. According to the Alzheimer’s Association, 7 million Americans have an Alzheimer’s diagnosis. 55 million people, in 2020, worldwide. Medicines are available that may temporarily delay the progression of symptoms until the disease marches on. Russell, Elon, Robert, Donald: you understand that in eviscerating funding that might alleviate the pain of those you love, perhaps even your pain, you have given up your right to access scientific discoveries that might help you remember what and who you forget.
Public

The #memoir I wrote with Dr. Bruce Miller is now available in #Chinese. Thank you Johns Hopkins UP & East China Normal UP. According to this article, "#China has the world's largest population of patients with #dementia, and #Alzheimer's disease and other dementias (ADOD) is the fifth leading cause of death in China." I hope this translation finds its way to people who are looking for information about #brain health, #grief, and #caregiving.

alz-journals.onlinelibrary.wil [alz-journals.onlinelibrary.wiley.com]

book cover in Chinese. Finding the Right Words: A Story of Literature, Grief, and the Brain. Picture of a head with lots of books in it. Pieces of the head are coming apart while a woman in silhouette looks on.
#EndAlz
Public

The #memoir I wrote with Dr. Bruce Miller is now available in #Chinese. Thank you Johns Hopkins UP & East China Normal UP. According to this article, "#China has the world's largest population of patients with #dementia, and #Alzheimer's disease and other dementias (ADOD) is the fifth leading cause of death in China." I hope this translation finds its way to people who are looking for information about #brain health, #grief, and #caregiving.

alz-journals.onlinelibrary.wil [alz-journals.onlinelibrary.wiley.com]

book cover in Chinese. Finding the Right Words: A Story of Literature, Grief, and the Brain. Picture of a head with lots of books in it. Pieces of the head are coming apart while a woman in silhouette looks on.
#EndAlz
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Public

Thank you #EastChinaNormalUP for translating into Chinese Finding the Right Words: A Story of Literature, Grief, and the Brain, which was originally published in English by #JohnsHopkinsUniversityPress. #Neurologist Dr. BruceMiller and I are so honored, and I know my father, Jerry, for whom the book is written, would have wanted his experience known so that it might help others. He was a wonderful human being -- when he had his memory and when he didn't.

#EndAlz
#Memoir

Public

MAGA = Make Alzheimer's Great Again? The rage is hard to put into words. Dad, I will do everything I can to fight this sadism, this idiocy.

"Neurologists say the downsizing at CARD [Center for #Alzheimer's and Related #Dementias] could be a blow to the scientific quest for new Alzheimer's treatments. NIH scientists at CARD work with external scientists to turn early scientific discoveries into treatments and medicines."

abcnews.go.com/Politics/trump-

#EndAlz
#USPol

ABC News · Trump administration fires workers at NIH's Alzheimer's research center, including incoming directorBy Will McDuffie
Public

February 21 was National Caregiver's Day. I was thinking about caregiving (in fact, speaking about it at #UCSF) but didn't post. Here is a photo of my mother and father, Tzip and Jerry, on their honeymoon. Both are gone. Many years of her life were dedicated to taking care of my father, who died of early-onset Alzheimer's. I love this photo.

#EndAlz
#Caregiving

Black and white photo of my mom and dad. Mom on the left with black v-neck t-shirt and plaid knicker pants sitting next to my dad whose arm is around hers.
Public

February 21 was National Caregiver's Day. I was thinking about caregiving (in fact, speaking about it at #UCSF) but didn't post. Here is a photo of my mother and father, Tzip and Jerry, on their honeymoon. Both are gone. Many years of her life were dedicated to taking care of my father, who died of early-onset Alzheimer's. I love this photo.

#EndAlz
#Caregiving

Black and white photo of my mom and dad. Mom on the left with black v-neck t-shirt and plaid knicker pants sitting next to my dad whose arm is around hers.
Public

On 2.21, please join me & #neurolgists Drs. Bruce Miller & LuisMartinez for a panel discussion on the value of sharing narratives re: #dementia's profound impact on those who know & love someone w/#Alzheimers, which is pretty much everyone. Bruce & I will talk about how we wrote together Finding the Right Words: A Story of Literature, Grief, and the Brain, & Luis will discuss Pipo, Don't Forget Me. It's hosted by #UCSF & the Alzheimer's Association.

gbhi.org/events/narrative-show

#EndAlz
#caregiving

Global Brain Health InstituteGlobal Brain Health Institute | Narrative Showcase: Dementia Stories for ImpactStorytelling transports us into the lives of others. A story raises awareness and reaches across identities. A story creates connections and emphasizes areas for change. In discussions about dementia including the complexities of Alzheimer’s disease and other neurodegenerative conditions, the art of narrative is a powerful global tool. Join us for the second webinar in the Narrative Showcase: Dementia Stories for Impact series, titled: "Dementia, Life Course, and Storytelling." The webinar will highlight two approaches in narrative to bring attention and understanding about dementia. First, writing toward an adult audience through a personal narrative as a daughter and having the scientific context to understand the changes in her father’s brain in the book written by Cindy Weinstein and Bruce Miller, Finding the Right Words. Then, writing for a young audience of English- and Spanish-speaking children, and making the message accessible through a beloved animal’s point of view in the book written by Luis Martinez, Pipo, Don’t Forget Me. Both stories across the life course educate about dementia and advocate for empathy in the light of a debilitating disease. Their stories trace not just the challenges, but also the sparks of hope in the midst of dementia.ObjectivesWebinar participants will: Hear from authors in the neurosciences and the humanities who reach both adult and young audiences Understand their motivations to craft stories about the human experience and changes in the brainLearn how these stories amplify important messages of advocacy and awareness about neurologic health ModeratorsFionnuala Sweeney (Ireland), Journalist & Broadcaster -  Former Anchor/Correspondent with CNN International; Multimedia Editor, Atlantic Institute; Atlantic Fellow for Equity in Brain Health, Global Brain Health Institute (GBHI). Creator of podcast series, Dementia is Global.Oz Ismail, PhD, Director, Scientific Programs, Alzheimer's AssociationPanelistsBruce Miller, MD, Neurologist; Director, Memory and Aging Center, University of California San Francisco; Founding Director, Global Brain Health Institute; Co-Author, Finding the Right WordsCindy Weinstein, PhD, Professor of English, Caltech; Atlantic Fellow for Equity in Brain Health; Co-Author, Finding the Right WordsLuis Martinez, MD, Neurologist; Assistant Clinical Research Coordinator, Memory and Aging Center, University of California, San Francisco; Author, Pipo, Don’t Forget Me
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Public

Cui bono? “This week we learned that review panels for major #Alzheimer’s clinical trials that were meeting in late Jan. have been cancelled,” Suzanne Schindler, a neurologist at the Washington U School of Medicine . . . “Progress in clinical trial diversity is not just a regulatory box to check; it’s a moral imperative & a scientific necessity,” Neil Weisman, pres. of Continuum Clinical, a co. that helps recruit participants for clinical trials, inc. early AD."

beingpatient.com/nih-grinds-to

Being Patient · NIH Activities Grind to Halt Under Trump Comms FreezeThe Trump administration locks down the U.S. NIH, interrupting medical research and drug development. Scientists sound the alarms.
#EndAlz
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