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#FTD

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(((Cindy Weinstein)))

“'On the day Bruce got his diagnosis, we left the doctor's office w/a pamphlet and a hollow goodbye. No plan, no guidance, no hope, just shock,'" she said in Las Vegas at the Women’s Alzheimer’s Movement Forum on 5.26, acc. to People."

It makes me so sad that as much as the science of #dementia & dementia care has advanced, some things remain the same. This was our experience in 1985 when our family learned my father had early-onset #Alzheimers.

yahoo.com/lifestyle/bruce-will

#BruceWillis
#FTD

Yahoo Life · Bruce Willis' Wife Gives Heartbreaking Update About Their FutureBy Jessica McBride
Replied in thread
Paul Chernoff

@cobalt123 @mastodonmigration @JonChevreau @caregivers @CindyWeinstein my wife was diagnosed with #FTD in 2009 so I’m very familiar how it is primarily about behavior and/or language and not memory. Being an Alzheimer’s caregiver is difficult but people I know who did caregiving for both found FTD much harder. FTD is difficult to diagnose, takes 2 years on average, with marital problems a common misdiagnosis (blame the wife). In late stages all dementias tend to be more alike.

(((Cindy Weinstein)))

Tallulah Willis's wisdom about not disconnecting from feelings -- the painful ones and the loving ones: "I love this guy so much and feeling feelings is tough stuff, but I'm so grateful to let them flow through me now instead of disconnecting from it," she wrote.

yahoo.com/entertainment/bruce-

#EndDementia
#Caregiving
#BruceWillis
#FTD

Yahoo Entertainment · Bruce Willis’ Daughter Tallulah Shares Photos ‘from the Forever Archives’: ‘Love This Guy So Much’By Ingrid Vasquez
(((Cindy Weinstein)))

Tallulah Willis's wisdom about not disconnecting from feelings -- the painful ones and the loving ones: "I love this guy so much and feeling feelings is tough stuff, but I'm so grateful to let them flow through me now instead of disconnecting from it," she wrote.

yahoo.com/entertainment/bruce-

#EndDementia
#Caregiving
#BruceWillis
#FTD

Yahoo Entertainment · Bruce Willis’ Daughter Tallulah Shares Photos ‘from the Forever Archives’: ‘Love This Guy So Much’By Ingrid Vasquez
(((Cindy Weinstein)))

Congratulations to #neurologist BruceMiller, recipient of the Susan Newhouse & Si Newhouse Award of Hope for a lifetime of #FTD (#frontotemporaldementia) research. His brilliance & empathy have touched so many, myself included. 1 of the most profound gifts he gave me was a #precision #diagnosis: #early-onset #Alzheimer's w/the #logopenic variant (word-finding). How I wish he'd been my father's #dr. during those dark years. His care for #families, #caregivers, & #people w/#dementia is unrivalled.

Replied in thread
(((Cindy Weinstein)))

@StevenvdV82. For anyone reading this thread, perhaps this #UCSF information about #ALS (and statistical overlap with #FTD) is helpful. According to the #MAC (Memory and Aging Center), "While estimates vary, it is now believed that approximately 20% of ALS patients also have the signs and symptoms of frontotemporal dementia." memory.ucsf.edu/dementia/amyot

Here is a brief explainer from the #NIH about #ALS. ninds.nih.gov/health-informati

Memory and Aging CenterAmyotrophic Lateral Sclerosis
(((Cindy Weinstein)))

Thank you, dear reader, for this incredibly kind review of #FindingtheRightWords, the #memoir I wrote with #neurologist, #Dr.BruceMiller. #Dementia doesn't take a break for the holidays, which means #caregivers don't get a break either. Sending strength to those of you who are living with #Alzheimer's, caring for someone with it or another form of dementia (#FTD, #CTE, #vascular, #LewyBodies, #early-onset, #Creutzfelt-Jakob, and others), and/or loving someone with #dementia.

(((Cindy Weinstein)))

washingtonpost.com/opinions/20

2020: 7 million in the US w/#dementia
2040: estimate of ~12 million in the US w/dementia

Dementia is the umbrella term. The "other diseases" include #FTD (FrontoTemporalDementia), #CTE (repeated concussions), #VascularDementia, #LewyBodies, Creutzfeldt-Jakob, #Alzheimer's, #early-onset Alzheimer's & more.

Let's revisit (& pass) #Biden's plan to support financially #caregivers, who often die before the person w/dementia for whom they are caring. Then what?

The Washington Post · The dementia crisis is here. Better training can’t wait. By Editorial Board
#EndAlz
(((Cindy Weinstein)))

washingtonpost.com/opinions/20

2020: 7 million in the US w/#dementia
2040: estimate of ~12 million in the US w/dementia

Dementia is the umbrella term. The "other diseases" include #FTD (FrontoTemporalDementia), #CTE (repeated concussions), #VascularDementia, #LewyBodies, Creutzfeldt-Jakob, #Alzheimer's, #early-onset Alzheimer's & more.

Let's revisit (& pass) #Biden's plan to support financially #caregivers, who often die before the person w/dementia for whom they are caring. Then what?

The Washington Post · The dementia crisis is here. Better training can’t wait. By Editorial Board
#EndAlz
*
(((Cindy Weinstein)))

During #Alzheimers AwarenessMonth & #NationalFamilyCaregiversMonth, check in on someone you know who has #dementia and their #caregiver(s). This could mean making them dinner, sitting w/the person w/#Alzheimers or #FTD while your friend goes for a walk, or going with your friend to the #nursinghome/#assistedliving where their loved one is. It could also mean listening to what's going on w/them, telling stupid jokes. So many ways to show your support, love, & #empathy.

yahoo.com/entertainment/demi-m

Yahoo Entertainment · Demi Moore Is Heartbroken Over Bruce Willis’ Dementia Battle: His Memory of Her ‘Faded’By John Quinn
(((Cindy Weinstein)))

My heart. #FTD, and other forms of #dementia, are so cruel, "merciless," to quote from this devastating article. This sentence, written by the mother of Anna, who at 36 developed symptoms of #bvFTD (behavioral #variant FTD), spoke to me loudly: "I didn’t cope, I existed." yahoo.com/lifestyle/then-knew-

It is #FTDAwarenessWeek and #WorldAlzheimersMonth.
Share your story. Break the #stigma. Support the #Research. #Listen to and do what you can to help the person with #Dementia and their #caregivers

Yahoo Life · My daughter was diagnosed with dementia at 37 – it tore our family apartBy Tara Thorpe
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