A local Parkinson’s Disease (PD) caregiver support group member recently offered her highest recommendation for a book titled “Advice From a Parkinson’s Wife: 20 Lessons Learned the Hard Way,” by Barbara Sheklin Davis (2019). We encourage you to buy it! Barbara authored five books before this one. She was a Parkinson’s care partner for over twenty years. Her latest book is “Advice from a Parkinson’s Widow.” Despite the title, “Advice from a Parkinson’s Wife,” this book will be of interest to all caregivers — whether spouses or not, and whether caring for someone with Parkinson’s Disease (PD) o ..read more

El 28 de febrero de 2024, Brain Support Network y Stanford Neurology organizaron un seminario web en español sobre la demencia por la enfermedad de Parkinson y por demencia con cuerpos de Lewy (DCL). La doctora Carla Abdelnour, becaria postdoctoral de la Universidad de Stanford, brindó una descripción general de los síntomas y el tratamiento de la demencia de ambos enfermedades. El seminario fue moderado por Linda Higueras del Brain Support Network, cuyo padre padeció demencia por cuerpos de Lewy. Visite nuestro canal de YouTube para ver una grabación de este maravilloso seminario web. ¡Pronto ..read more

Local support group member Joan’s husband recently passed away with Lewy body dementia.  This is a list of items she encourages families to consider before a loved one’s passing.  Some of the advice is specific to spouses.  A bit of the advice is California-specific. None of the advice is specific to Lewy body dementia. Have cremation/burial lined up with the mortuary or cremation facility ahead of time.  Know what phone number you are to call day or night.  There is a time limit that a body can stay at a care facility after death.  Most mortuaries will post an ob ..read more

Brain Support Network y Stanford serán coanfitriones de un seminario web en español sobre la demencia de la enfermedad de Parkinson, también llamada demencia con cuerpos de Lewy. (DCL). En preparación para ese seminario web, hemos compilado una lista de recursos LBD relevantes en español. Documentos descargables | Artículos en línea Documentos descargables Cambios Cognitivos en la enfermedad de Parkinson Publicado por la American Parkinson Disease Association, 2023. Cómo Enfrentar Juntos La DCL  Publicado por la Lewy Body Dementia Association, Febrero 2022. Consejos para manejar ..read more

On February 29 at 1pm PT, the Lewy Body Dementia Association (LBDA, lbda.org) will host a webinar on “Introduction to Synuclein Biomarkers: How Researchers are ‘Seeing’ Lewy Bodies in the Living Brain.” Stanford neurologist Kathleen Poston, MD, will discuss recent advances in the development of biomarkers for alpha-synuclein, how they are changing research in Lewy body dementia (LBD) and Parkinson’s disease (PD), and how they may change clinical practice in the future. Currently, the diagnosis of Lewy body dementia (and most neurological disorders) is made based on signs and symptoms repo ..read more

El miércoles 28 de febrero a las 6 p. m. (hora del Pacífico), Brain Support Network y Stanford Neurology organizarán un seminario gratuito en español sobre la demencia por la enfermedad de Parkinson y por demencia con cuerpos de Lewy (DCL). La doctora Carla Abdelnour, becaria postdoctoral de la Universidad de Stanford, brindará una descripción general de los síntomas y el tratamiento de la demencia de ambos enfermedades. El seminario será moderado por Linda Higueras del Brain Support Network, cuyo padre padeció demencia por cuerpos de Lewy. Regístrate ahora. El seminario será grabado. Ayúdanos ..read more

Local support group member June is a practicing nurse.  And she’s been a hospice volunteer for many years.  Her father recently passed away; his clinical diagnosis was Lewy body dementia.  His main symptoms were parkinsonism. Her mother was the primary caregiver.  The mother was able to keep the father at home. Daughter June provided care and some oversight.  Her father died in February 2023.  He was on hospice since early January 2023. June recently shared some “considerations in caregiving” which apply to caregivers of those with Parkinson’s and all the atypical ..read more

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 mor ..read more

In December 2023, Brain Support Network and Stanford Parkinson’s Community Outreach co-hosted a discussion for caregivers to share the top three things they have learned about caregiving. Caregivers offered advice to each other, including advice caregivers wished they could tell their younger selves. Participants in this discussion were members of local San Francisco Bay Area caregiver support groups coordinated by Brain Support Network and Stanford. Participants have experience caring for those with Parkinson’s disease, Lewy body dementia, progressive supranuclear palsy, multiple system atrop ..read more

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. Please visit our symposium webpage for slides from Dr. Poston’s and Ms. Irving’s presentations recordings of the presentations (including questions-and-answers) and the panel notes from e ..read more