Podcast by PT on treating PSP with physical therapy and palliative care

In November 2023, the Degenerative Diseases Special Interest Group (part of the Academy of Neurologic Physical Therapy, neuropt.org) featured Heather Cianci, PT, on the topic of progressive supranuclear palsy (PSP) for a podcast.  Heather is an expert physical therapist on PSP and other movement disorders.

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Should someone without symptoms but biomarkers be diagnosed with AD?

There is an effort underway to define “prodromal” or “preclinical” Alzheimer’s disease (AD).  If someone has particular biomarkers (including tau in cerebrospinal fluid and amyloid seen on a special PET scan) but no memory loss (or other clinical symptoms of Alzheimer’s), there is a proposal to diagnose these people as having “Alzheimer’s disease.”

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Lewy Body Dementia Caregiving Symposium – Recording, Notes, etc.

In mid-October 2023, Stanford’s Lewy Body Dementia Research Center of Excellence and Brain Support Network co-hosted a hybrid symposium on Lewy body dementia (LBD) caregiving.  This event featured two expert speakers — Stanford’s Dr. Kathleen Poston and social worker Christina Irving — followed by a panel of five LBD caregivers.

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NYT: The Doyenne of Classical Publicists Takes on a Final Client: Herself

To raise awareness of Lewy body dementia and explore caregiving for her husband artist Nicholas Zann, Mary Lou Falcone wrote the book “I Didn’t See It Coming: Scenes of Love, Loss and Lewy Body Dementia.” This New York Times article is about Ms. Falcolne, a publicist who is taking on a final client — herself. Excerpt from the article: “Even when she knew that she had to write about Lewy body dementia, which the pitcher Tom Seaver and the actor and comedian Robin Williams also suffered from, she was initially determined to leave herself out of the narrative. Her first draft of the book read more like a disease awareness pamphlet. Friends and early editors told her that no one would care about Lewy body dementia unless they first cared about her. So she rewrote it, beginning with her childhood and continuing, in exacting detail, even including a log of what it was like to care for Zann at the end.”

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Lewy Body Dementia Caregiving Symposium (Hybrid) – Oct 14, 10am-2pm PT – Register now!

Stanford’s Lewy Body Dementia Research Center of Excellence and Brain Support Network are co-hosting this Lewy body dementia caregiving symposium. This is a hybrid event — some attending in-person on Stanford’s campus and many attending virtually.

Date/Time:
Saturday, October 14, 2023
10am to 2pm PT (with a break for lunch – no speakers)

Space is limited, so please register now!
There are two ways to join — virtually (online) or in-person at Stanford.

Symposium Flyer (PDF)


VIRTUAL REGISTRATION IS NOW OPEN!

REGISTER

Who should attend? Everyone is welcome — family caregivers, home care aides, healthcare professionals, anyone in the community interested in learning how to cope with Lewy body dementia, PD dementia, or dementia with Lewy bodies.

Virtual Attendance:
$10/each
$20/each – “pay-it-forward” ticket for yourself and sponsor a ticket

Is $10 is a financial hardship? Please let us know and we’ll provide a code for a free ticket.

Do have the financial means to sponsor someone else’s attendance? Please choose the “pay-it-forward” ticket level ($20). Or, you can donate directly to Brain Support Network, with a note that the contribution is earmarked for event scholarships.

Deadline to register for the virtual symposium:
Saturday, October 14, 2023, 10:30am PT

 


IN-PERSON REGISTRATION IS NOW OPEN!

REGISTER

Location:
Stanford Center for Academic Medicine
453 Quarry Road, Palo Alto, CA 94304

Doors Open: 9:30am
Parking is free and plentiful
Lunch is included

Who should attend in-person? We welcome those who are caring for a family member or friend with Lewy body dementia, Parkinson’s disease dementia, or dementia with Lewy bodies.

In-person Attendance:
$20/each – includes lunch
$40/each – “pay-it-forward” ticket for yourself and sponsor a ticket

Is $20 is a financial hardship? Please let us know and we’ll provide a code for a free ticket.

Do have the financial means to sponsor someone else’s attendance? Please choose the “pay-it-forward” ticket level ($40). Or, you can donate directly to Brain Support Network, with a note that the contribution is earmarked for event scholarships.

Deadline to register for the in-person symposium:
Thursday, October 12, 2023, noon PT
(We need time to order lunches for attendees)

Visit a resource table with information from Stanford Neurology, Brain Support Network, Family Caregiver Alliance, and the Lewy Body Dementia Association. Stanford staff can tell you about research studies underway for which you or your family member may be eligible.

Worried about covid-19? The room is fairly spacious, with probably 4-feet between chairs. Some of the organizers will be wearing masks. Masks are not required but recommended. If you are still concerned, register to attend virtually!

Afterwards, visit the historic Stanford Cactus Garden, which is a short walk from the Center for Academic Medicine.

 


PROGRAM

Our first speaker is Kathleen Poston, MD, Stanford. She’ll give an overview of Lewy body dementia — symptoms, diagnosis, and treatment.

Next up is Christina Irving, LCSW, Family Caregiver Alliance. She will discuss communication challenges in the context of dementia and hallucinations/delusions.

After the lunch break, we’ll feature a panel of LBD caregivers. Some of the caregivers have already lost their loved ones, and the diagnosis of LBD was confirmed through brain donation. Many of the caregivers are members of Brain Support Network’s Lewy body dementia caregiver support group.

OTHER DETAILS

Within a few weeks of the event, we will email everyone who registered a list of resources from Stanford Neurology, Brain Support Network, Family Caregiver Alliance, and the Lewy Body Dementia Association.

The symposium will be recorded. We will share a link to the recording with everyone registered.

Questions? Please email Brain Support Network.

JOIN US!  SPACE IS LIMITED — REGISTER TODAY!