iiinova — where your digital self keeps evolving

Brain Support Network @brainsupportnet.bsky.social · 09/10/2026

The "Creative Caregivers Show and Tell" virtual gathering brought together caregivers from the Stanford Parkinson’s Caregiver Support Program and Brain Support Network for a creative show-and-tell.

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Brain Support Network @brainsupportnet.bsky.social · 09/10/2026

Photographer Joan Sparks shares how getting back into photography provided a safe, creative space while caregiving her husband with LBD. Watch the full video: www.youtube.com/watch?v=Hlz8... Copyright: Joan Sparks Photography #caregiving #lewybodydementia

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Brain Support Network @brainsupportnet.bsky.social · 09/10/2026

Why Rare Disease Research Has a Recruitment Problem When a disease is rare, finding enough people to participate in research can be one of the greatest challenges to developing new treatments. Read at FTD Disorders Registry: ftdregistry.org/press/why-ra...

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Brain Support Network @brainsupportnet.bsky.social · 09/10/2026

Weekend Watch: Communication matters in Lewy body dementia - The Lewy Body Society Watch: www.youtube.com/watch?v=kQqf... #lewybodydementia #LBD

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Brain Support Network @brainsupportnet.bsky.social · 08/10/2026

Because of our sister's desire to promote awareness and further research into LBD, she donated her brain. Without the help of Brain Support Network, it would not have been possible. Jeanne F. 7/16/26 #braindonation

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Brain Support Network @brainsupportnet.bsky.social · 08/10/2026

Avoid trying to "prove" the diagnosis or changes you are seeing.

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Brain Support Network @brainsupportnet.bsky.social · 08/10/2026

Our local support group members see it in their family members with Lewy body dementia (LBD). The AFTD article recommends caregivers "focus on practical solutions, environmental supports, and strategies that promote safety, reduce distress, and preserve the relationship."

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Brain Support Network @brainsupportnet.bsky.social · 08/10/2026

This is a challenging symptom for caregivers and family members! Anosognosia is not limited to frontotemporal degeneration disorders, such as progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and frontotemporal dementia (FTD).

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Brain Support Network @brainsupportnet.bsky.social · 08/10/2026

Anosognosia is a lack of insight or self-awareness of one's symptoms or neurological condition. "Those experiencing anosognosia may also display a lack of concern about changes and behaviors and their impact on others." Read more at AFTD: www.theaftd.org/help-and-hop... #FTD #FTDawareness

theaftd.org

Dear HelpLine: Anosognosia | AFTD

Some individuals with FTD can present with an inability to recognize their own diagnosis and its symptoms, a symptom called anosognosia.

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Brain Support Network @brainsupportnet.bsky.social · 08/10/2026

Before LBD completely took over, Patti expressed her wish to donate her brain for research when she passed so that strides could be made in finding a cure for LBD. A neuropathology report confirmed Patti did indeed have Lewy Body Dementia and Alzheimer’s.

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Brain Support Network @brainsupportnet.bsky.social · 08/10/2026

In late 2020 after undergoing blood tests, an MRI and extensive cognitive testing, Patti, age 69, received a Lewy Body Dementia (LBD) diagnosis.

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Brain Support Network @brainsupportnet.bsky.social · 08/10/2026

An evaluation by her general practitioner revealed she was quite low in vitamin B. Patti received several vitamin B shots and the issues disappeared.

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Brain Support Network @brainsupportnet.bsky.social · 08/10/2026

LBD Case Study: Patti K. In late 2019, Patti began to show organizational deficiencies when sitting down with her family to plan Christmas festivities... Read more at our Case Studies page: www.brainsupportnetwork.org/brain-donati... #braindonation

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Brain Support Network @brainsupportnet.bsky.social · 07/10/2026

What Caregivers Should Know About Lewy Body Dementia and Its Unique Challenges The often misunderstood disease comes with unpredictable symptoms and high demands, but peer support can help ease the #caregiving burden Read at AARP: www.aarp.org/caregiving/m...

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Brain Support Network @brainsupportnet.bsky.social · 07/10/2026

Learn more at our LBD Education page: www.brainsupportnetwork.org/education/le...

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Brain Support Network @brainsupportnet.bsky.social · 07/10/2026

Did You Know? Clinical criteria for dementia with Lewy bodies (DLB) was first proposed in 1996. The criteria were revised in 1999 and 2005. This means that many neurologists in practice today never studied this disorder in medical school, if they graduated in 2005 and earlier. #lewybodydementia

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Brain Support Network @brainsupportnet.bsky.social · 06/10/2026

...It’s the feeling of sitting in a room right next to the person you love most, feeling completely, utterly alone… and then beating yourself up for feeling that way."

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Brain Support Network @brainsupportnet.bsky.social · 06/10/2026

Excerpt from this blog post about feelings of loneliness on the part of caregivers: "There is a very specific, heavy kind of isolation that happens when you share a life with someone who has significant physical or mental health needs... Read more: thecaregiverspace.org/when-you-fee... #caregiving

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Brain Support Network @brainsupportnet.bsky.social · 06/10/2026

Preparing for Emergencies Emergency situations — such as tornadoes, hurricanes, heat waves, fires and blizzards — can significantly impact safety, especially for individuals with #dementia, who may find them distressing and confusing. Being prepared is crucial. More: www.alz.org/help-support...

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Brain Support Network @brainsupportnet.bsky.social · 06/10/2026

“This MSA caregiver support group has been a lifesaver for me. I can openly share my feelings in ways I can’t with friends or other family members.” – Local Support Group Member #caregiving

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Brain Support Network @brainsupportnet.bsky.social · 06/10/2026

Upon beginning my research on MSA, I grew grateful for the early diagnosis because many patients don’t receive a set diagnosis for years, mistaking symptoms for Parkinson’s Disease."

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Brain Support Network @brainsupportnet.bsky.social · 06/10/2026

The Loving Sacrifice of Caregiving Excerpt: "Reflecting back on a few years prior to the diagnosis, my mom was gradually displaying unique symptoms, such as excessive random laughter, difficulty with balance/coordination. Read more at Mission MSA: missionmsa.org/the-loving-s... #caregiving

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Brain Support Network @brainsupportnet.bsky.social · 05/10/2026

See our FAQ on our site: www.brainsupportnetwork.org/brain-donati...

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Brain Support Network @brainsupportnet.bsky.social · 05/10/2026

Brain Donation Process: Brain Bank The brain bank performs a microscopic analysis of the brain tissue and attempts to correlate what is seen in the neurological records and in the written family report. #braindonation #brainbanks #atypicalparkinsonism

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Brain Support Network @brainsupportnet.bsky.social · 05/10/2026

From Coalition for Compassionate Care of California Here's a list of great tools for having conversations about advance care planning with family and friends: coalitionccc.org/CCCC/Resourc... #caregiving

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Brain Support Network @brainsupportnet.bsky.social · 05/10/2026

Dementia, the Karaoke Test and the Vanishing Self - WSJ As frontotemporal dementia degrades social awareness, loved ones and neuroscientists confront the heartbreaking boundary between a changing mind and the enduring self Read at WSJ: www.wsj.com/health/welln... #dementia

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Brain Support Network @brainsupportnet.bsky.social · 05/10/2026

By sharing your journey over time, you’ll help researchers better understand MSA, improve clinical care, and accelerate the development of new treatments and clinical trials.

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Brain Support Network @brainsupportnet.bsky.social · 05/10/2026

MSA-SPHERE is more than a registry – it’s a community-powered research platform designed to capture the real experiences of people living with multiple system atrophy.

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Brain Support Network @brainsupportnet.bsky.social · 05/10/2026

MSA-Sphere - Shared Stories. Stronger Research. After months of building alongside patients, care partners, clinicians, and researchers, the MSA-Shared Patient History, Experience, and Research Exchange (MSA-SPHERE) research platform is now available. Learn more: missionmsa.org/msa-sphere/ #MSA

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Brain Support Network @brainsupportnet.bsky.social · 05/10/2026

Emma Heming Willis on life after Bruce Willis's dementia diagnosis After her husband was diagnosed with frontotemporal dementia, she learned to navigate caregiving while protecting her own health. Read more at BrainHealth: www.brainhealth.com/voices/celeb... #FTDawareness

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Brain Support Network @brainsupportnet.bsky.social · 02/10/2026

Weekend Watch: Understanding Frontotemporal Dementia - Barrow Neurological Institute Dr. Tom I. Finkelstein, discusses the insights into diagnosis, research, and support of frontotemporal dementia (FTD). Watch on YouTube: www.youtube.com/watch?v=uH3r...

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Brain Support Network @brainsupportnet.bsky.social · 02/10/2026

My father with progressive supranuclear palsy (PSP), a type of frontotemporal degeneration (FTD), compulsively ate a 5-pound box of chocolates in an hour. We learned to ration chocolates and other sweets.

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Brain Support Network @brainsupportnet.bsky.social · 02/10/2026

Behaviors include compulsive overeating; rigid food preferences; binging on sweet; eating non-food items; etc. This brings to mind a wonderful story about a "banana lady," who craved and hoarded bananas.

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Brain Support Network @brainsupportnet.bsky.social · 02/10/2026

Symptom Spotlight - Hyperorality (The AFTD) The AFTD's October 2026 newsletter has a terrific article on hyperorality. This is a "behavioral symptom in which affected individuals compulsively taste, chew, or ingest food or non-food items." www.theaftd.org/aftd-partner... #FTDawareness

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Reposted by Brain Support Network

msatrust.bsky.social @msatrust.bsky.social · 02/10/2026

Tomorrow is World MSA Day, MSA Trust, Mission MSA and Combat MSA join the global MSA community in raising awareness of multiple system atrophy (MSA). Together, we are connecting the global MSA community. #ConnectingTheGlobalMSACommunity #WorldMSADay

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Brain Support Network @brainsupportnet.bsky.social · 02/10/2026

But the new study on FTD examined a South Texas Hispanic cohort and compared results with national data, finding that Hispanic participants presented with more movement-related symptoms and advanced cognitive impairment at diagnosis than non-Hispanic whites.

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Brain Support Network @brainsupportnet.bsky.social · 02/10/2026

Dementia affecting younger persons strikes Hispanics more than previously thought, UT Health San Antonio-led study shows While Hispanic populations generally experience higher dementia rates, they have remained underrepresented in frontotemporal #dementia research. news.uthscsa.edu/dementia-aff...

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Brain Support Network @brainsupportnet.bsky.social · 02/10/2026

Brain donation also supplies those final answers in that it can confirm the diagnosis."

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Brain Support Network @brainsupportnet.bsky.social · 02/10/2026

"Our family would like our mother's journey with FTD to help bring awareness to the importance of early diagnosis and brain donation. Without early diagnosis, the family is left wandering in the dark, looking for answers. Tom G. July, 2025 #braindonation

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Brain Support Network @brainsupportnet.bsky.social · 01/10/2026

LBDA 2026 Community Conference Series The Lewy Body Dementia Association's 2026 Community Conference Series brings together experts, trusted partners and the #LBD community for a day of education, empowerment and support. Events in Minnesota, Wisconsin, Arizona and Nevada: lbda.org/2026-communi...

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Brain Support Network @brainsupportnet.bsky.social · 01/10/2026

October is Lewy Body Dementia Awareness Month Let's raise awareness about LBD, educate the public about the symptoms, diagnosis, and treatment, and also support individuals and families living with LBD. Learn more about LBD and brain donation: www.brainsupportnetwork.org/education/le...

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Brain Support Network @brainsupportnet.bsky.social · 01/10/2026

VOICES: The Emotional Anchors That Help Caregivers Stay Grounded From horses and music to genetic answers, families share the moments and tools that brought clarity, comfort, and connection amid the uncertainty of #dementia. Read at BeingPatient: beingpatient.com/voices-emoti...

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Brain Support Network @brainsupportnet.bsky.social · 30/09/2026

Elizabeth donated her brain with the help of Brain Support Network. Her journey through FTD exemplifies resilience, grace, and a deep commitment to her family. Her story underscores the importance of seeking diagnosis, supportive care, and contributing to research.

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Brain Support Network @brainsupportnet.bsky.social · 30/09/2026

By 2022, she exhibited more pronounced aphasia and cognitive decline, leading to a diagnosis of frontotemporal dementia (FTD).

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Brain Support Network @brainsupportnet.bsky.social · 30/09/2026

...issues in organizing and planning in her personal and professional life, and disorientation in both familiar and new environments. These symptoms were initially attributed to various causes.

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Brain Support Network @brainsupportnet.bsky.social · 30/09/2026

FTD Case Study: Margaret “Elizabeth” Vincent In 2021, Elizabeth began to show noticeable changes in behavior and communication, including difficulty in speech and word-finding, withdrawal from social activities... Read more: www.brainsupportnetwork.org/brain-donati... #braindonation

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Brain Support Network @brainsupportnet.bsky.social · 30/09/2026

Those are some of the questions Dr. Zaldy Tan addresses in his new book, “What to Remember When You’re Forgetting: How to Live and Thrive With Memory Loss, Alzheimer’s and Other Dementias.”

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Brain Support Network @brainsupportnet.bsky.social · 30/09/2026

A dementia diagnosis can raise difficult questions about what comes next: How do you know what changes to expect? How should families prepare? And how can someone continue to live well as memory loss progresses?

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Brain Support Network @brainsupportnet.bsky.social · 30/09/2026

What to Remember When You Are Forgetting: Dr. Zaldy Tan on Living Well With Dementia Read and listen: beingpatient.com/what-to-reme... #dementia #caregiving

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Brain Support Network @brainsupportnet.bsky.social · 30/09/2026

Darrell Waltrip diagnosed with frontotemporal degeneration, stepping away from limelight In the statement, the family of the 79-year-old says he has been diagnosed with frontotemporal degeneration (FTD) due to injuries he suffered from a racing career. www.aol.com/articles/dar... #FTDawareness

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