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.
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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.
If you are in the Palm Desert area on March 28, please consider coming to the Joslyn Center where I'll be talking about #Alzheimer's: #Grief, #Guilt, #Memory, and #love. I will discuss the many years it took to get the diagnosis of early-onset Alzheimer's, his suffering, our pain, what I wish I knew when he was sick, & the importance of sharing our experiences.
If you are in the Palm Desert area on March 28, please consider coming to the Joslyn Center where I'll be talking about #Alzheimer's: #Grief, #Guilt, #Memory, and #love. I will discuss the many years it took to get the diagnosis of early-onset Alzheimer's, his suffering, our pain, what I wish I knew when he was sick, & the importance of sharing our experiences.
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.
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.
As Katy Neas of The Arc says, "So much of what we’re seeing is behavior that’s grounded in either fear, ignorance, or the normalization of incivility."
This article has great ideas for how to respond when people say hurtful things about someone's disability.
Read here: https://time.com/7202210/disability-questions-remarks-how-to-respond/
Time · 11 Ways to Respond When Someone Insults a Loved One’s Disability
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.
https://alz-journals.onlinelibrary.wiley.com/doi/10.1002/alz.14254
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.
https://alz-journals.onlinelibrary.wiley.com/doi/10.1002/alz.14254
ISO thoughts on/opinions on/experience with/anecdotes about automatic medication dispensers (particularly in relation to seniors and those progressing in to dementia). I am in the market for one and would love to hear reviews firsthand. TIA.
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.
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.
Let's encourage those who have #Alzheimers and other forms of #dementia to defy the disease by living life as fully as possible as long as possible.
"#Grief is the reminder that love was present, and that even if it’s no longer in its original form, that love still exists."
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 Finding the Right Words: A Story of Literature, Grief, and the Brain, & Luis will discuss Pipo, Don't Forget Me. It is hosted by #UCSF & the Alzheimer's Association.
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
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.
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
I hear my mom coughing, investigate. No she didn't swallow the wrong way. She's got two projects, and one is going fine, the other not so much. I ask if these are intellectual projects -- "No" -- physical projects? "Yes." Can you explain? "Well, I have to take..." she points, her index finger peeking out from under the covers, then stops, at a loss for words, and starts laughing. She's not out of the #hallucination, just amused at not being able to explain.
#dementia #OldOld #caregiving
CareCon2025 is today @ noon PT (3 pm ET). The free event will feature panels & workshops on the costs of #caregiving -- financial & emotional, the love (& sometimes reluctance) that comes w/caregiving, the guilt, the grief, the joy. I will be on a panel, "The End of Life but not the End of Love." This special happening is made possible by the generosity of #SethRogen & #LaurenMillerRogen, whose mother Adele died of early-onset #Alzheimer's & was the inspiration for HFC.
www.donatehfc.comHFC CareCon 2025{{MetaTags.description}}