Susan Koen

Author of Dancing in the Face of Death: Out now: http:/ Psychologist | Speaker on Healthy Love / Healthy Grief, Caregiving, and Courage & Dignity Amid Dementia

[Susan Koen @susankoenauthor]

I'm still taking it all in.

Just days after launch, Dancing in the Face of Death became Amazon's #1 New Release in:
🏆 Love & Loss
🏆 Dementia
🏆 Psychologist Biographies
Thank you to everyone who bought, shared, recommended, and supported this book. 💛
@MargaretAtwood 🙏🙏

[Susan Koen @susankoenauthor]

📖 A month after Barbara's diagnosis, she saw me journaling and said:
"You should write a book. It would help people." 💛
That became Dancing in the Face of Death.
https://t.co/cWgyWTRJGW
#Memoir #Caregiving #FTD

[Susan Koen @susankoenauthor]

🧠 It's Alzheimer's Awareness Month, but not every dementia is Alzheimer's.
FTD often starts earlier and first changes behavior, personality or language, not memory. It's often misdiagnosed.
Learn more: https://t.co/auEuPy729K
#FTD #DementiaAwareness

[Susan Koen @susankoenauthor]

🎙️ I joined Caregiver Relief to talk about Barbara, her FTD diagnosis, and what caregiving taught me about love.
Every caregiver deserves to hear that what they feel is human. 💛
🎧 https://t.co/6TuTz0nQS9
#Caregiving #FTD

[Susan Koen @susankoenauthor]

📚 Susan Recommends: Caregiver Relief
As Caregivers Month ends, a podcast that supports caregivers all year with real stories and practical help. 🎙️
Grateful to have shared Barbara's and my story there. 💛
https://t.co/6TuTz0ooHH
#SusanRecommends #Caregiving

[Susan Koen @susankoenauthor]

💛 November is National Family Caregivers Month. This year's theme: "Care Connects Us."
Caregiving connected me to Barbara in ways I never imagined, and to people who helped carry what I couldn't carry alone.
To every caregiver: I see you. 🌿
#CareConnectsUs #Caregiving

[Susan Koen @susankoenauthor]

📚
A memoir begins with one person’s story.
At its best, it creates space for others to tell theirs. 💛
That has been one of the greatest gifts of publishing Dancing in the Face of Death—hearing from readers who see pieces of their own lives in ours.
📖 https://t.co/cWgyWTRbRo

[Susan Koen @susankoenauthor]

For families affected by GRN-related FTD, CureGRN is an important resource for research, education, advocacy & community. 🧠🔬
For families navigating a rare disease, credible information—and connection—matter. 💛
https://t.co/iFYZlB6AsG
#SusanRecommends #CureGRN #GRNFTD

[Susan Koen @susankoenauthor]

The hardest caregiving work is often invisible.
📞 Calls
🩺 Appointments
📄 Paperwork
🔬 Research
🤝 Advocacy
💛 And the emotional weight underneath it all.
To the people quietly doing this work every day: I see you.
#Caregiving #CaregiverSupport #FTD

[Susan Koen @susankoenauthor]

“Did I do enough?”
It’s a question many caregivers carry. 💛
I’ve tried to replace “Was I perfect?” with something else:
“Did I continue to love?”
I explore this deeply in Dancing in the Face of Death. 📖
https://t.co/cWgyWTRJGW
#Caregiving #HealthyGrief #Memoir

[Susan Koen @susankoenauthor]

Families facing FTD often ask: Where can I find information I can trust?
AFTD offers FTD education, caregiver resources, research information & ways for families to connect. 🧠💛
A resource worth knowing:
https://t.co/auEuPy6ukc
#SusanRecommends #FTD #AFTD

[Susan Koen @susankoenauthor]

Behind every diagnosis is a life.
Behind every statistic is a family.
For me, that family was ours. 💛
📖 Dancing in the Face of Death tells our story of love, FTD, caregiving, difficult decisions, courage & grief.
Available now:
https://t.co/cWgyWTRJGW
#FTD #Memoir #Caregiving

[Susan Koen @susankoenauthor]

🧠 I was a psychologist before I became a caregiver.
But caregiving taught me things professional training alone never could: uncertainty, exhaustion, advocacy, anticipatory grief—& extraordinary love. 💛
Sometimes the person doing the caring needs care, too. 🌿#WorldMentalHealth

[Susan Koen @susankoenauthor]

When Barbara was diagnosed with FTD, research stopped being abstract. It became deeply personal. 💛
Every study, participating family & discovery represents hope for those who come next.
Grateful for the work of CureGRN and the wider FTD community. 🔬
https://t.co/iFYZlB78ie
#FTD

[Susan Koen @susankoenauthor]

🧠 FTD is dementia—but it doesn’t always look the way people expect dementia to look.
It can affect behavior, language, personality, judgment & movement.
Greater awareness can help families find answers sooner. 💛
Learn more: https://t.co/auEuPy729K
#FTD #DementiaAwareness

[Susan Koen @susankoenauthor]

🧠💛 This World FTD Awareness Week, I’m grateful to see our story helping to put a spotlight on FTD.

Thank you to CureGRN and the Remember Me podcast for sharing my conversation about Barbara, our life together, her journey with FTD.

[Susan Koen @susankoenauthor]

🧠💛 It’s #WorldFTDAwarenessWeek.

FTD changed Barbara’s life. It changed mine.

But families are speaking. Researchers are searching. Advocates are organizing. And awareness is growing. 🔬📣

This week, learn one thing about FTD—and share it with someone else. @AFTDHope @curegrn

[Susan Koen @susankoenauthor]

🧠💛 It’s #WorldFTDAwarenessWeek.

FTD changed Barbara’s life. It changed mine.

But families are speaking. Researchers are searching. Advocates are organizing. And awareness is growing. 🔬📣

This week, learn one thing about FTD & share it with someone. @AFTDHope @PennMedicine

[Susan Koen @susankoenauthor]

Today begins World FTD Awareness Week. 🧠💛

This week is deeply personal to me.
And organizations including @AFTD, @CureGRN, and the @PennFTDCenter are helping connect families, advance research, and turn greater awareness into action.
🔗 Resources: https://t.co/auEuPy729K

[Susan Koen @susankoenauthor]

I’ve appreciated seeing other care partners—including Emma Willis—speak publicly about the complexity & isolation caregiving families can experience. The more people bring these experiences into the open, the less alone others have to feel.

Inspiration: https://t.co/DCXqpcmjy4

[Susan Koen @susankoenauthor]

🔬 Research gave Barbara and me something extraordinarily important: hope.
Today, researchers are continuing to investigate genetic forms of FTD and therapies targeting specific causes.
For families living with GRN-FTD, scientific progress is profoundly personal. 💛🧠 @curegrn