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- “Cooperative” Organizations in the Akron, OH Area
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- Assisted Living
- Autonomic Symptoms – by Dr. Mitchell Miglis
- Brain Autopsy Resources (when a brain donation is not possible)
- Brain Donation – Urgent as a Loss has Occurred
- Brain Donation in Canada
- Brain Support Network Grant Process
- Brain Support Network’s Role in The ALLFTD Study
- Case Study
- Communication and Swallowing Management with PSP and CBD – by Stevy Shadwick, CCC
- Conference Information
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- Donating Stock and Other Securities to Brain Support Network
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- Giving Up
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- Important Role of Hospice, Skilled Nursing Facilities, and Hospitals in Brain Donation
- In Memory of Col. Floyd Lewis
- In Memory of Jamie Black Shepard
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- In Tribute to Larry Riddle
- Job Description: Brain Donation Case Manager
- Key Questions – For Proceeding with Brain Donation Arrangements
- Key Questions – Pagination
- Lewy Body Dementia Caregiving Symposium Agenda – October 2023
- Lewy Body Dementia Caregiving Symposium, October 14, 2023
- Lewy Body Dementia Communication Challenges – by Christina Irving, LCSW – Notes and Q&A
- Lewy Body Dementia Overview – by Dr. Kathleen Poston
- Lewy Body Dementia Symposium – Panel of Five LBD Caregivers – Notes
- Local Attorneys Recommended by Support Group Members
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- Local Home Care Agencies Recommended by Support Group Members
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- Mayo Clinic Consent Form
- Mayo Clinic Jacksonville Brain and Spinal Cord Protocol
- Mayo Clinic Jacksonville Fixed Tissue Protocol
- Mayo Clinic Jacksonville Protocol and Shipping Instructions
- Mayo Neuropathology Report Overview
- Motor Abnormalities in PSP & CBS – by Cameron Dietiker MD
- Multiple System Atrophy Symposium – May 4, 2024
- Multiple System Atrophy Symposium Agenda – May 2024
- Neuro-Palliative Care – by Dr. Jocelyn Jiao
- Northwestern University Protocol and Shipping Instructions
- Pathology Candidates
- Physical Therapy and PSP/ CBD Every step of the way – by Lucy Lotz DPT and Alexander Dien DPT
- Physical Therapy for MSA – Erica Pitch
- Progressive Supranuclear Palsy / Corticobasal Degeneration Symposium Agenda – June 2024
- Progressive Supranuclear Palsy / Corticobasal Degeneration Symposium, June 29, 2024
- PSP/CBD Research Update and Practical Conference Overview
- BSN PSP/CBD Conference – Adam Boxer
- BSN PSP/CBD Conference – Daniel Lee
- BSN PSP/CBD Conference – Dianna Wheaton
- BSN PSP/CBD Conference – Haung (Ho) Yu
- BSN PSP/CBD Conference – Larry Golbe
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- BSN PSP/CBD Conference – Adam Gerstenecker
- BSN PSP/CBD Conference – Donna Schempp
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- BSN PSP/CBD Conference – Gerard Schellenberg
- BSN PSP/CBD Conference – Heather Moss
- BSN PSP/CBD Conference – Jeanette Brown
- BSN PSP/CBD Conference – Leslie Wolf
- BSN PSP/CBD Conference – Megan DePuy
- BSN PSP/CBD Conference – Panel: Practical Part 1
- BSN PSP/CBD Conference – Panel: Practical Part 2
- BSN PSP/CBD Conference – Panel: Research Part 1
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- BSN PSP/CBD Conference – Phil Myers
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- Role of the Funeral Home in Brain Donation
- Sources for Equipment Loans or Equipment Gifts – Recommended by Support Group Members
- Supplying Neurological Medical Records to the Mayo Clinic
- Swallowing and Communication – by Stevy Shadwick, CCC
- Tips for Ordering Neurological Medical Records from Houston Methodist Hospital
- Tips for Ordering Neurological Medical Records from Johns Hopkins
- Tips for Ordering Neurological Medical Records from UNC Chapel Hill
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Posts by category
- Category: Alzheimer's
- “The Heartbreak and Hazards of Alzheimer’s Caregiving”
- Should someone without symptoms but biomarkers be diagnosed with AD?
- PART (primary age-related tauopathy) research
- Brain donation makes possible research on LATE pathology
- “Common thread, silver bullet, naïve hope?” (Dr. Golbe’s musings)
- “Genetic Testing May Influence Treatment of Neurologic Disorders”
- “Their Dementia Diagnosis Doesn’t Mean They’re Keeping Silent” (WSJ)
- Scientists identify the cause of Alzheimer’s progression in the brain – University of Cambridge
- “What is the difference between Lewy body dementia and Alzheimer’s disease?”
- “Is It Alzheimer’s Disease or Lewy Body Dementia?” – BrightFocus Foundation
- Being an advocate for your loved one with LBD and other disorders – UCSF webinar
- Basket Trials and Neurodegenerative Disease – Summary of a PSP, CBS, and AD Study
- Nine tips for traveling with family members impacted by dementia (AFA)
- 3-step Framework for Diagnosing Dementia (Brad Dickerson, MD)
- “The Soul of Care: The Moral Education of a Husband and a Doctor” (book review)
- Anosognosia – lack of awareness (not denial) of one’s own dementia
- “In Oregon, pushing to give patients with degenerative diseases the right to die”
- “‘Therapeutic Lying’ and Other Ways To Handle Patients With Dementia”
- “Life Lessons From Dad” (Wall Street Journal)
- Axovant’s experimental drug for dementia with Lewy bodies failed in trial
- Our drug system is set up to fail, for Alzheimer’s, etc. We need biomarkers.
- Caregivers are often forgotten (article by widow of Gene Wilder)
- Negative Results with TPI 287 in CBS and PSP
- Important Research – First Genome-Wide Association Study in DLB
- Coping with problem behaviors (DICE approach and a useful caregiver guide book)
- “Is It Alzheimer’s or Another Type of Dementia? How the Experts Make a Diagnosis”
- “An Advance Directive for My Mind” (letter to children)
- Results from AbbVie phase 1 study of tau antibodies in PSP
- The need to distinguish between Alzheimer’s and other dementias
- ‘Mom, I didn’t steal your dentures’: Coping when dementia turns to delusion
- Newspaper article on risk of antipsychotics in Lewy body dementia
- “How to Choose a Dementia Care Facility. Avoid My Mistakes.”
- “What to Do When Loved Ones Won’t Admit Their Memory Loss” (WSJ)
- “Understanding Dementia” – online course begins July 24th
- “Anti-Tau Drugs for PSP Move into Phase II”
- Lewy Body Dementia Info on Dementia Aide (website)
- Reversal of cognitive decline in ten patients with Alzheimer’s or mild cognitive impairment
- “My Life After Caregiving” (caring.com)
- A protein called PERK may be a target for PSP, CBD, and other tauopathies
- “Why Many People Abandon Friends and Family” (Wall Street Journal)
- “Dementia caregivers: Learning to live in your loved one’s reality” (Philadelphia Inquirer)
- Supporting, and getting support, from loved ones after a diagnosis
- “Next-Generation Tau PET Tracers Strut Their Stuff” – differentiating PSP from AD
- “Before you send your spit to 23andMe, what you need to know” (STAT News)
- FDA allows 23andMe to sell genetic tests again (NYT article)
- 5 common dementias, including Lewy Body Dementia
- Multimodal Imaging Ties Tau to Neurodegeneration, and Symptoms
- “Jumping Genes Suspected in Alzheimer’s” – mitochondria cascade hypothesis
- “The blessing inside my sister’s Alzheimer’s disease” (Washington Post)
- “Risky drugs: Antipsychotics, dementia can be lethal combination”
- “Delirium Makes its Own Mark on Cognitive Decline” (Alzforum)
- Compassionate communication and managing difficult behaviors
- Care partner communication at all stages of dementia – workshop notes
- PBS Documentary Tonight and Article on Alzheimer’s Research
- 5 things to do after a diagnosis
- Anosognosia (lack of awareness) in dementia
- Problems families dealing with dementia may face
- Short description of Lewy body dementia
- Is Alzheimer’s Disease a Uniquely Human Disorder? (webinar)
- Neurodegenerative Diseases, covered in Nature Insight
- Diagnostic accuracy is low, even for Alzheimer’s!
- “Understanding the Dementia Experience” (with focus on memory loss)
- Managing difficult behaviors, hallucinations, and delusions with validation and redirection
- Tau drug failed in Alzheimer’s trial (despite what newspapers say)
- “The Differential Diagnosis of Dementia With Lewy Bodies” (article for neurologists)
- “And how are you (the caregiver) doing?”
- “What I wish someone had told me in the beginning” (from Alzheimer’s daughter)
- Excerpts from “Ten Thousand Joys, Ten Thousand Sorrows”
- Scientific American article on PSP research as a “backdoor” to Alzheimer’s
- Advice for dementia caregivers
- Webinar: “Pathogenic Protein Spread? Let’s Think Again”
- More on tau imaging research
- “Dementia and Alzheimer’s Caregiver Conference” – video available
- Billionaire Richard Rainwater Dies with PSP
- Exercise and dementia (research updates from Alzforum)
- Tau imaging research and how tau may spread (Alzforum update)
- Learning to communicate and enjoy time with someone with dementia
- Methylene blue update
- Alzheimer’s – mitochondrial cascade hypothesis
- Argyrophilic grain disease – Brazilian Aging Brain Study Group description
- Mayo Clinic study of thousands of brains reveals tau as driver of AD
- “Diagnosing and Treating Rapidly Progressive Dementias” (dementia within one year)
- Are PET scans helpful in diagnosing dementia?
- Posterior cortical atrophy – short overview
- Tau Therapies in the Pipeline (one to be studied in PSP in late 2015)
- “Slow Dancing with a Stranger” (recommended book)
- Antipsychotics Overprescribed in Nursing Homes (AARP article)
- Hippocampal sparing Alzheimer’s (Mayo Clinic)
- Medicare Policy Change – No Improvement Requirement
- Geriatricians question common treatments, including dementia drugs
- Different Types of Alzheimer’s Disease (based on Mayo Brain Bank)
- Imaging Tau with PET Scans
- Subjective Cognitive Decline (research)
- Decline in Dementia in Europe
- Recommended Blogs – About Having Alzheimer’s and About the Final Phase of Life
- Therapy Even if No Improvement – Big Change to Medicare Rules
- Bad News about Both PSP/CBD Experimental Trials in 2012
- “3 Questions to Ask About Assisted Living Memory Care Communities”
- WSJ Article About Tau Researcher
- “New Drug Trial Seeks to Stop Alzheimer’s Before It Starts” (NYT)
- “Six Signs Memory Problems Could Be Serious”
- “Making Alzheimer’s Moms Happy With Just a One-Minute Call a Day”
- Abnormal Proteins and Genetics in Frontotemporal Dementia
- Alzheimer Diagnosis Possible With Scan (Eli Lilly agent Amyvid)
- Most frequent pathologies behind corticobasal syndrome
- “You’re Looking at Me Like I Live Here and I Don’t” – New film
- Mass Genl researchers look at anesthesia and cognitive dysfunction
- Comparing survival time by dementia type (AD, DLB, FTD, VaD, mixed)
- Grief has to do with failure to accept change
- UCLA uses PET scans to study tau tangles
- Cognitive decline similar in LBD and AD
- Scientific American article on bexarotene
- DLB Patients Don’t Turn Their Heads to the Caregiver?
- Cerebral amyloid angiopathy – overview
- Explaining “Alzheimer’s pathology” and Braak staging in “Alzheimer’s Disease”
- “Different Forms of Dementia” including Lewy Body Dementia – webinar notes
- “Dementia Care Without Drugs” – did you know…?
- Mayo Clinic research on forms of Alzheimer’s, including hippocampal sparing
- AgD (argyrophilic grain disease) – Alzheimer Europe description
- New Alzheimer’s Diagnostic Guidelines
- Four new genes found that play a role in AD
- Half of Alzheimer’s cases misdiagnosed
- How disordered proteins spread
- Tau Induced Memory Loss in Alzheimer’s is Reversible
- AD Presenting as CBS (2006)
- First AD patient with PIB scans
- Tests Detect Alzheimer’s Risks, Should Patients Be Told?
- “Years Later, No Magic Bullet Against Alzheimer’s Disease”
- “Spinal-Fluid Test is Found to Predict Alzheimer’s”
- Typical cerebral metabolic patterns- PSP, etc.
- “On Caregiving” (by anthropologist caregiver)
- Economist Magazine Report on Human Genome
- “Alzheimer’s Stalks a Colombian Family” (NYT)
- Survival time similar with FTD but shorter than AD (UCSF)
- DAT-SPECT: useful for DLBvAD, not useful for MSA, PSP, CBD
- The 6 R’s of Managing Difficult Behavior (from The 36-Hour Day)
- The “Other” Dementias (featuring Lewy Body Dementia story)
- “The Big Four” dementias – AD, LBD, FTD, and Vascular
- Famous amnesic launches a bold, new brain project at UCSD’s Brain Observatory
- Dealing with anosognosia (unawareness of decline)
- “Instead of Saying X, Trying Saying Y”
- Research findings: clearing tau in mice by targeting Hsp70
- Nitrates – Possible Environmental Cause of AD, PD, etc
- “Revealed: how Alzheimer’s infects the brain”(tau)
- 16 patients with clinical DX of CBS (11 had CBD, 5 had AD)
- “The Alzheimer’s Project” (HBO and free online)
- Delirium (from hospitalization or illness) accelerates memory loss
- Delirium (from Hospitalization or Illness) + Memory Loss
- Bak article on cognitive profiles – AD, PSP, CBD, MSA, DLB
- Alzheimer Type Pathology in the PSP Brain (Mayo Jax)
- Dr. Gott: Seroquel not advised for elderly
- Study of Antipsychotics in Alzheimer’s (UK)
- Tau aggregation, 12/08 research (Japan)
- NPH Commonly Misdiagnosed as PD, Atypical Parkinsonism or AD
- “Alzheimer’s vaccine stopped plaque, not dementia”
- “Learn to Manage Common Behavior Problems” (anger, hallucinations, nighttime wakefulness)
- “Antipsychotics Dangerous for Elderly With Dementia”
- “Compassionate Communication” – do’s and don’ts
- Photophobia, VH, and RBD in PSP+CBD (Mayo Rochester study)
- On the horizon? – lithium study in PSP
- First Steps after a Dementia Diagnosis
- “Diagnostic criteria of dementia” (Canadian journal article)
- Distinguishing Alzheimer’s from Dementia with Lewy Bodies
- Differentiating DLB from AD (Neurology ’04, Ferman)
- Boston Globe article- anesthesia, delirium+dementia
- Problem of delirium with hospital stays (Boston Globe, 2-12-07)
- Understanding Behavioral Changes in Dementia
- “Drugs for agitation: to use or not to use” (Alz Assoc Article)
- Warning for those with dementia about anticholinergics
- Warning for those with dementia about anticholinergics
- “Understanding Difficult Behaviors”- recommended book
- “Cognitive Changes w/Aging” and “Maintaining Health” – lecture notes
- Caregiving for those with Dementia – Class Notes
- Namenda (memantine) and PSP
- “Foiling Chemical Event May Combat Brain Breakdown”
- Arctic ground squirrel clears out tau during hibernation
- Category: Best of
- Category: Caregiving - Dementia
- Caregiver’s Advice – “20 Lessons Learned the Hard Way”
- “Advice From a Parkinson’s Wife: 20 Lessons…” (book review)
- Top Three Things I Learned as a Caregiver (Recording, Discussion Summary, and Notes)
- “My father had dementia and I was his caregiver. Here’s what I wish I had known”
- Podcast on therapeutic deception and how dementia affects the family
- “Treating hallucinations” in PD (review article)
- Poem about caring for someone with dementia (Esquina Poetica)
- “I got tired” (poem by Parkinson’s caregiver)
- “Learning Spanish” – a Lewy body dementia caregiver’s story
- “What is an Atlas CareMap?”
- Lewy Body Dementia Panel Discussion Following the Movie “SPARK” – Notes
- “Nothing Could Prepare Me for Watching My Wife Slip Away” (NYT)
- Gadgets, equipment, and supplies for mobility, safety, incontinence, mealtime, etc.
- “Can Caregiving Cause PTSD?” (NextAvenue)
- “7 Ways Family Caregivers Can Combat Compassion Fatigue”
- In-home Activities While Sheltering in Place – UCSF Caregiving Webinar Notes
- “Managing daily activities and fall prevention” in Lewy body dementia – UCSF webinar
- Caregiving in the Time of Social Distancing – Chat notes
- “Having a Back-Up Plan – What if You Get Sick?” – UCSF caregiving webinar notes
- “Diagnosed with dementia, she documented her wishes for the end.”
- “Little Wished-for Deaths” (beautiful caregiving story)
- “The Comforting Fictions of Dementia Care” (The New Yorker)
- “Hiring In-Home Help” (Family Caregiver Alliance publication)
- “Aikido communication – Align, agree, redirect, and resolve” – notes
- “Dementia Spouse Caregivers’ Relationship Closeness” – Dissertation Excerpts
- “Compassion fatigue,” including typical trajectory – Notes
- How can I alleviate fear in someone with dementia?
- Man found joy in completing puzzles that were family photos
- Compassion fatigue in caregiving and ways to take care of yourself
- Apathy – 3 components, case study, vs. depression, and strategies
- Five Tips for Improving a Difficult Caregiving Day – Webinar on Wed 2/28, 11am
- “Family Meetings: Even when a Loved One Resists” – Conference Call Notes
- “Choose Your Attitude for the Journey” (empowering caregivers for the long journey)
- “Changing The Way We Look At Dementia” (KHN)
- “What is Anosognosia and How Does it Impact You as a Caregiver?”
- Advance Care Directive for Dementia (New York Times)
- “For Elder Health, Trips To The ER Are Often A Tipping Point” (Kaiser Health News)
- 2017 Accomplishments and Year-End Challenge Grant (for contributions by Dec. 31st!)
- “Hands-on Caregiving” – notes from two lectures
- “The Long Goodbye: Coping With Sadness And Grief Before A Loved One Dies”
- Questions to ask a potential home care agency
- Ideas from Technology Panel at National Caregiving Conference
- “Understanding Challenging Situations: Putting Together Pieces of a Puzzle” – lecture notes
- “Don’t Go At It Alone: Navigating Resources for Higher Levels of Care” – lecture notes
- “Grit, Grace, and Resilience” in dementia caregiving – Webinar Notes
- “An Open Letter from a Caregiver to the Diseases, Illnesses and Afflictions that Shake Our Lives”
- “Grit, Grace, and Resilience: The Story of Successful Caregiving” Webinar, Aug 30
- “How to Inspire a Dementia Patient to Shower” (Bob DeMarco)
- “Caregiving Is Hard Enough. Isolation Can Make It Unbearable.”
- General excerpts from curriculum on dementia for healthcare professionals
- “My caregiving is wearing me out. What can I do?”
- “Dying Words” (beautiful story from WBUR, June 13, 2017)
- NYT story about adjusting to neurological decline
- “Dementia patients may die sooner if family caregivers are mentally stressed”
- Those with neurological disorder have suggestions for family and friends
- #1 challenge of dementia caregivers is emotional stress, #2 is physical stress
- Santa Clara County & San Mateo County Families in Need — Respite Funds Before 6-30-17
- “The A’s of Dementia” – Amnesia, Atypical Depression, Aphasia, Agnosia, Apraxia
- “Boot Camp” Helps Dementia Caregivers Take Care of Themselves
- Suggestion – Approach “aggression” as a “reactive behavior”
- Ten warning signs of caregiver stress
- “Caregiver Stress and Burnout: Tips for Regaining Your Energy, Optimism, and Hope”
- Six tips on coping with inappropriate dementia behavior; saying “I’m sorry”
- “Anticipatory Grief and Ambiguous Loss” – Webinar Notes
- Creating a care plan in 10 steps (from caring.com)
- Anticipatory Grief and Ambiguous Loss in Dementia Care – webinar on March 29
- “Managing the Change that Nobody Wants”
- “Understanding the Emotional Aspects of Caregiving” – Webinar Notes
- Positive and negative aspects of caregiving, etc.
- Books about Dementia (recommended by members of FTD Support Forum)
- “Podcasts to help you get to sleep”
- “Building a Care Partnership” – notes from webinar with Lonnie Ali
- “You, Your Loved One, and Parkinson’s” – some relevant advice
- “How to ask for the help you need”
- Some resources recommended by “Care to Plan” tool
- Interview with Ambiguous Loss Expert Pauline Boss
- NextStepInCare.org – useful website for care transitions
- “How delirium can be different than dementia” (Toronto Star)
- “Care Paradigm” – webinar notes
- Caregiving Guidelines (six important points when providing care)
- “How to help older adults eat more and gain weight”
- “Nursing Home Residents Gain New Protections” (NYT)
- “I’ve had it up to here! Coping with stress while caregiving” – Webinar Notes
- 5 Tips for Dealing with Family Conflict
- Family conflict is common in caregiving
- “Things I have learnt” (message to caregivers)
- 8 of the Best Books About Caregiving (caring.com, 2016)
- “The Year of Conquering Negative Thinking”
- “My sister made her end-of-life wishes clear. Then dementia took hold”
- “Caring For A Loved One At Home Can Have A Steep Learning Curve”
- “Communicating and Advocating with Medical Professionals” (workshop notes)
- “Actually, let’s not be in the moment” (NYT)
- Hospital Discharge Planning (Notes from caregiver conference)
- “Grieving the Living!” (caregiver grief)
- “7 Signs It Is Time to Consider a Senior Care Community”
- “Fighting Loneliness When Dementia Steals a Spouse”
- Caregivers should prepare an emergency ID card identifying them as caregivers
- “Many Caregivers Spend $7K Annually Out of Pocket” (more for dementia caregiving)
- “Words Matter: Speaking Your Mind” (notes from caregiver conference talk)
- “The Givers” – article on caregiving (Scientific American Mind)
- It can take two to three years to recover from bereavement
- Family-centered approach to health care
- Videos on Caregiver Anger, Guilt, Depression, and Grief
- Caregiver Grief, Loss, and Bereavement
- Family Caregivers Need Help Too
- “Failure to Improve Is Still Being Used, Wrongly, to Deny Medicare Coverage”
- Caregivers – guilt, 11 tips for looking after yourself, etc.
- 8 Tips to Ask for the Caregiving Help You Need
- Caregiver grief, anger, and guilt
- Tips for replying to false accusations, rude talk, or incomplete verbal requests
- Caregiver safety in face of anger and aggression
- “10 Actions that Helped our Family after Mom’s Alzheimer’s Diagnosis”
- Tips for reducing dementia-related behavior (anger, etc)
- Conditions with symptoms similar to dementia
- “Smarter Ways to Teach Family Members Medical Skills” (online videos)
- Medicare Hospital Ratings Coming Soon
- A few resources for “healthwear” (clothing for disabled)
- Self-compassion: a test, some guided meditations, and on-the-job self-care for caregivers
- “4 strategies for communicating successfully with an aging parent”
- “9 Strategies to Help a Parent Who Refuses Care”
- Issues in Dementia Diagnosis, Research, and Lexicon (Alzforum – April 20, 2016)
- “Dementia patients are wrongly told ‘it’s just a mid-life crisis’ because doctors miss tell-tale signs of symptoms”
- Yelp Has Hospital Ratings
- “The Many Faces of Dementia” to include 2-hour segment on DLB
- Good, basic intro to dementia – definition, types, caregiver burden, etc.
- Accepting Elders’ Opinions/Wishes While Caregiving
- “Help for the Caring” (NeurologyNow)
- “5 ways to care for yourself while caring for a loved one”
- “The ICU is Not a Pause Button”
- Falls and Dysphagia (new publication co-authored by BSN)
- “Could a vitamin or mineral deficiency be behind your fatigue?” (short article, Harvard)
- “The 2 Most Important Caregiver Tips”
- Caregiver stress and taking care of yourself
- Anticipatory Grief – three short articles (and some excerpts)
- Suggestions for those dealing with neurological disorders (FTD)
- “Choosing a Hospice: 16 Questions to Ask”
- Washington Post’s “Hospice Guide” and how to evaluate a hospice agency
- 3 Important Questions and “Practical Tips on Balancing Loss and Connection” (Handout)
- “Balancing Loss and Connection” – a few notes, 12-10-14 neuropsychologist talk
- Seeing the ‘Invisible Patient’ (the caregiver)
- Finding out “not wanting to live hooked up to machines” means; mediation resources; etc.
- Start any conversation with an older relative by asking them about what care they want
- Having a “palliative care conversation”
- “How music, art, and horticulture can function as therapy” – Caregiver workshop notes
- Family Caregivers Kit (nine booklets)
- “Caregiving: A Special Report,” Washington Post, 3-5-14
- “Medicare rules create a booming business in hospice care for people who aren’t dying”
- Gadgets for older adults (GeriPal blog, 12/14/13)
- “Easing the Added Stress of Caregiving During the Holidays”
- Why some recover more quickly after a fall injury than others (NYT, 11-15-13)
- “Have you lined up all your ducks?”
- Re-consider Medicare Part D Before December 7th
- Discharge Planning (checklist, etc)
- Advice About Assisted Living for Aging Relatives, Part 2
- End-of-Life Planning Mistakes to Avoid (from financial planner’s view)
- “Two Kinds of Hospital Patients: Admitted, and Not”
- Where’s That Advance Care Directive? (NYT, 10-17-13)
- My Life as a Caregiver (Dr. Nancy Snyderman, AARP Mag, Oct/Nov 2013)
- Advice About Assisted Living for Aging Relatives (NYT, 10-16-13)
- “The Logistics of Death: What to Do When Someone Dies”
- Caregiver Resources on Oral Care, Dry Mouth, etc.
- New Way to Pay for Long-Term Care? (sell life insurance policy)
- 10 Topics About Adult Children Caring for Aging Parents
- Helping Someone Who Is Grieving, and Helping Yourself Through Grief
- Seven Suggestions When Interacting With Person With Dementia (or Neurological Disorder)
- 5-Week Online Course in Dementia Care and Webinars Afterwards
- Hospital Surgery Ratings
- “How Do I Manage My Parents’ Money When They Can’t?”
- Put Local Emergency Phone # in Your Cell Phone
- Social isolation is deadly (Slate, 8-23-13)
- “Life and Death in Assisted Living” (Frontline, 7-29-13)
- Are you overpaying for care?
- Do’s/Don’ts for Effective Communication, and Dartmouth Memory Handbook
- Poems by LBD Caregiver Wife
- “6 Mind Hacks That Keep Stress In Check”
- “When Aggression Follows Dementia” (NYT 7-12-13)
- “When Should You Fire Your Doctor?”
- “Constructive Rest”
- “Caregiver Stress Syndrome: Identifying Symptoms, Finding Solutions”
- CareSolver.com – step-by-step care plans
- Excerpts from “A Caregiver’s Challenge: Living, Loving, Letting Go”
- “Advice for caregivers from the front lines” (SJMN, 6-9-13)
- Love-Trust-Humor-Patience (article by PSP spouse caregiver)
- 10 Things Every Family Should Know About Aging with Dignity and Independence
- Planning and discussing – 70% of those older than 65 will need long-term care
- “Doctor’s Orders: 20 Minutes Of Meditation Twice a Day” (WSJ 4-15-13)
- HIPAA Law Often Misinterpreted
- “The Hazards of Leaving the Hospital” and Planning for a Caregiver Emergency
- “How to Live in Assisted Living,” avoiding despair and finding meaning (NYT, 3-20-13)
- “After the Caregiving Ends”
- “Isolation: the Pain of the Caregiver’s Soul”
- “Five Things Physicians and Patients Should Question” (geriatrics; hospice)
- Drugs to avoid or be cautious of in the elderly (2-page Canadian cheat-sheet)
- 40 Requests of Family, Friends, and Care Team (Jill Bolte Taylor, PhD)
- “I’m Still Here” Approach to Those With Dementia
- How to get loved one to accept help?
- Leapfrog Group’s Hospital Ratings
- “Shopping for the Right In-home Help”
- “At-home caregivers face challenges, sacrifice” (SJMN, 12-2-12)
- How-to videos – getting out of bed, walking with a walker, etc.
- Signing arbitration agreement with nursing home
- “When Illness Makes a Spouse a Stranger”
- “The 36-Hour Day” – excerpts on swallowing, tube feeding, and end of life care
- “Wallet Smarts” (caring.com)
- “The cost of dying: It’s hard to reject care even as costs soar” (SJMN)
- “Little-known brain disease rips apart lives” (FTD)
- Social Worker’s Reading List for Dementia Caregiving
- Article on caregiver loss and grief
- “The Immense Value of the Family Caregiver Support Group”
- “Support groups a lifesaver for caregivers”
- Study into use of feeding tubes – surveying families
- “Bathroom Safety for Older People”
- Dementia Coping Skills & Behavior Management
- LA Times article on anticholinergics + a list
- LA Times article on anticholinergics + a list
- Hospital Delirium: one-third of those over 70 (NYT)
- “Care for the Family Caregiver”
- “If spouse has dementia, your risk rises too”
- Helpful Hints from Occupational Therapist (2-11-10 Webinar Notes)
- Very small trial of Exelon in PSP (for dementia)
- Treating psychosis in PD and use of antipsychotics
- Checklist on Family Matters
- Dealing with anosognosia (unawareness of decline or difficulties)
- “Delirium or Dementia – Do you know the difference?” (Alz Assoc)
- “Extreme Caregiving” for Someone with Behavioral Changes
- NPR Story on Delirium (from Hospitalization)
- Gait and Balance Webinar Notes (5-28-09)
- Will speech deteriorate over time?
- Dementia and suicidal behavior (literature review)
- Getting Support – Go through your list of friends, etc.
- Vivimind for dementia (available OTC in Canada)
- “Care for the Family Caregiver” brochure
- “Doctors Say Medication Is Overused in Dementia”
- “Doctors Say Medication Is Overused in Dementia” (NYT 6-24-08)
- “Detecting Hospital Delirium” (Johns Hopkins Health Alert)
- “Avoid confusion in the hospital – Ten tips”
- Another WSJ article on antipsychotics (12/20/07)
- Article on use of antipsychotics (WSJ 12-4-07)
- “To drive or not to drive, that is the question…1 solution”
- Clock for meal times and bed time
- Tips for Caregivers (from Janet Edmunson)
- Caregiver Health (New Fact Sheet from Family Caregiver Alliance)
- “Depression, Delirium & Dementia” – lecture notes
- “Hard Choices for Loving People” booklet
- Large display clock suggestion
- “Caregiving at Life’s End”
- Category: Caregiving - General
- Dr. Jocelyn Jiao to speak on palliative care, November 19, 2024
- Best of Self-Care for Caregivers
- Pennsylvania Gazette: The Humanist Is In
- NYT: Strategies to cope with personality and mood changes
- In Memory of Steven Russell
- KFF Health News – How to Find a Good, Well-Staffed Nursing Home
- “Tips to Manage Carers Stress” by PSP Association (UK)
- “Love, Dignity and Parkinson’s: From Care Partner to Caregiver” (book review)
- “Can’t Sleep? Try This Proven Alternative to Medication” – cognitive behavior therapy (NYT)
- Local support group member’s advice on items to have in place
- 2024 LBD, PSP/CBD, and MSA Caregiver-only Local Support Group Meeting Dates
- Local group member Camilla on corticobasal degeneration and palliative care
- Gadgets, equipment, and tricks for mobility, safety, mealtime, etc.
- Next Avenue: Preserve Family Relationships With Courageous Conversations
- Turning (Caregiving) Challenges Into Gifts – Talk by Local BSN Support Group Member, June 5
- Considerations in Caregiving (from a local support group member)
- 2023 Brain Support Network MSA Support Group Meeting Dates
- 2023 Brain Support Network PSP/CBD Support Group Meeting Dates
- 2023 Brain Support Network Caregiver-only Support Group Meeting Dates
- Local support group member Lyn’s thoughts on what he did well as a caregiver
- High burden on those with PSP and their caregivers, regardless of type
- “Managing Swallowing Changes” – CurePSP webinar notes
- 40% of Elderly Brains Found to Include “LATE” (brain research)
- Checklist for When Your Loved One Dies
- Nine tips to help family caregivers avoid depression
- “Being a caregiver” (short remarks by local support group member)
- Anticipatory and Ambiguous Grief” (in caregiving) – Webinar Notes
- “Chronic Disease, Your Healthy Spouse, and Sex” (article)
- “Women Share How They Balance Caregiving, Children, and Careers”
- 2022 Brain Support Network Caregiver-only Support Group Meeting Dates
- 2022 Brain Support Network PSP/CBD Support Group Meeting Dates
- 2022 Brain Support Network MSA Support Group Meeting Dates
- Seeing a spouse’s disability as a disability for the couple (Next Avenue article)
- Short excerpts on “ambiguous loss” from article about Pauline Boss
- Barbara Karnes shares two tools for working with grief
- Stanford hosting 9 online talks on compassion, Dec 6 to Dec 10
- “4 ways that older people can bolster or improve their mental health” – WaPo
- “The Truth About Caregiving: Your Determination Isn’t Enough” – Washington Post
- “Creating a Self-Care Practice” (by a Parkinson’s Caregiver)
- Taking Care of Ourselves – Four tips from Barbara Karnes
- “10 Tips for Family Caregivers” – Caregiver Action Network
- 2021 Brain Support Network Caregiver-only Support Group Meeting Dates
- “Uncertainty fuels anxiety” (Washington Post)
- “The Unsung Longevity Factor of Social Connection” – webinar notes
- “Caregiver Toolkit in Uncertain Times” (such as covid) – webinar notes
- “Strategies for managing feelings of loss and grief” (Elaine Book, MSW)
- “When a Loved One Dies” (AARP list)
- Caring.com’s List of the 8 Best Medical Alert Systems
- CalHOPE offers a mental health call-line for Californians struggling with COVID-19
- “Protecting Your Mental Health During COVID-19” – Notes from a caregiver chat
- “How to Build Resilience While Living with Parkinson’s” or other disorders – webinar notes
- Caring.com’s list of the eight best medical alert systems
- “Oleh Hornykiewicz, Who Discovered Parkinson’s Treatment, Dies at 93” (NYT)
- “Ambiguous loss and anticipatory grief” – Webinar notes
- “How to avoid burnout in the middle of a pandemic” – Lifehacker.com
- Social Isolation: Caregiving in the time of covid – lecture notes
- “Practicing Wellness to Build Resilience” – Webinar Notes
- “Running in Circles: Gerbil Wheel Caregiving” (The Caregiver Space blog)
- “Things Keep Getting Scarier. He Can Help You Cope.” (NYT, 4/13/20)
- “A Presentation on Grief” – CaregiverTeleconnection Notes
- “Medical Decision Making in the Face of Serious Illness” (and COVID) – Webinar Notes
- “Understanding Anticipatory Grief” – Janet Edmunson webinar notes
- “Crying in Your Car Counts as Self-Care” (NYT article)
- “That Discomfort You’re Feeling is Grief” (HBR)
- “Coping with novel coronavirus while caregiving” – Teleconference notes
- Senior care options (not specific to any disorder) – Webinar notes
- Apathy (and depression) in Parkinson’s Disease – Webinar notes
- “How Much Should Family Caregivers Sacrifice?” Panel Discussion – Notes
- “Treating Regret” (NYT, 1-22-20)
- “Can a Second Opinion Make a Difference?” (Yale Medicine)
- “When Life Throws You Curveballs, Embrace the ‘New Normal’” (NYT)
- “Learning The Language Of My Husband’s Parkinson’s”
- Swallowing, Eating/Chewing, Taste/Smell, etc – Notes from Speech Therapist
- “How to Avoid Becoming Isolated as a Caregiver”
- “When Your Spouse Dies” – a checklist
- “Self-Compassion for Caregivers” – Webinar Notes
- “Caregiver Burnout” (from Cleveland Clinic)
- “The Caregiver’s Handbook” and list of apps
- “How to Build Resilience While Living with Parkinson’s” – Webinar Notes
- “Are you a healthy caregiver” – 10 question test
- “3 Legal Documents Caregivers Need to Manage a Senior’s Healthcare”
- ‘It can be isolating’: How caregivers handle the stress and find support
- “Guardianship 101” – Webinar Notes
- “How to Ask for Help and Actually Get It – People want to help you. You just have to ask.”
- Webinar – Preventing Burnout for the Dementia Caregiver
- Aug 2018, Speakers at Parkinson’s Support Group Meetings, Northern CA
- “Read This If You’re Going Through Adversity”
- Our 15th year of caregiver-only support group meetings
- “Tips for taming caregiver stress” (Harvard)
- “How to bounce back from anything. Resilience can be learned.” (Healthy Living)
- July 2018, Parkinson’s Support Group Meetings, Northern and Central California
- Spousal Caregiver Job Description (humorous)
- “Persisting in the Face of Caregiver Difficulties” – Webinar Notes
- Nine brain donations in nine days! Amazing generosity towards medical research.
- “A Parkinson’s Life and a Caregiver’s Roadmap” – Book Review
- 10 quick and easy dysphagia diet recipes (DailyCaring.com)
- Daily caregiving balancing act – how much to help?
- Fear of the next level of care and the need to stop time traveling – Speaker notes
- “6 Ways to Stop Judging Yourself As a Caregiver”
- “21 Tips for Washing, Grooming and Going to the Bathroom”
- “Palliative Care: Planning for the Road Ahead” – Speaker Notes
- “It’s Time to Have a Conversation About Your Health Care Decisions”
- “31 Five-Second Reminders that Will Make Calmness Your Superpower”
- Hiring a geriatric care manager – why and how
- One woman’s candid story about caregiving for an aging parent
- “The Happy Hours” – great idea for socialization and other thoughts from KLS
- “10 Things to Locate Before Your Parent Has a Health Crisis”
- “When Should You Move Your Parent Into Your Home?”
- “Minimizing Caregiver Fatigue” – webinar notes
- “Elder Abuse: Sometimes It’s Self-Inflicted” (NYT)
- “The Five Leading Signs of Caregiver Burnout and What They Mean for Your Future”
- Ten examples of self-care – pick one today!
- Five points in helping elderly maintain dignity and sense of control
- “The Coming Family Caregiver Crunch: 8 Tips to Survive” (Forbes)
- 5 Things Family Caregivers Need to Know About Family Leave (NextAvenue)
- “Healing from Bad Luck Fatigue” – Webinar Notes
- “Life After the Diagnosis: Expert Advice on Living Well with Serious Illness” – podcast
- “Caring for the Caregiver: How to Prevent Burnout”
- A revolution in health care is coming (The Economist)
- Treating Behavioral Symptoms of Dementia Without Drugs (Next Avenue)
- Five tools for mindfulness for caregivers (The Caregiver Space)
- “Caregivers, You Are Loved!” from Chaplain J.E. Hulsey
- “I’VE FELT SO MUCH AND NOW I’M NUMB”
- “9 Ways to Make Caregiving Easier” (AARP Family Caregiving)
- Seven tips for (Parkinson’s) caregivers
- “A Welcome Respite” by Kathryn Leigh Scott
- Create Your Caregiving Team
- Happy New Year and Thank You from Brain Support Network!
- Advice from a spouse caregiver (eight items)
- Not a Jolly Holiday? Use this Guide to Find Gratitude
- Five technologies for caregivers, including a lock, GPS tracking, and medication dispenser
- Healthy aging talk by Stanford geriatrician (lots about sleep and over-medication)
- Excerpt on acceptance/denial in “Finding Meaning with Charles”
- Advice for caregivers and those with Parkinson’s from Connie Carpenter Phinney
- Dealing with lack of motivation and helping someone accomplish tasks (with coaching)
- Caregiving and the holidays: from stress to success
- “When Breath Becomes Air” Discussion (on doctor-patient interaction) with Lucy Kalanithi
- “How to Reduce Compassion Fatigue and Caregiver Burnout”
- “Challenges, Changes, and Choices: Caregiving for People with Movement Disorders”
- Balancing Your Role as a Caregiver (and a person with a diagnosis) – Webinar Notes
- Non-medication approach to depression – webinar notes
- Panel of Palliative Care – Notes
- “Caregiving 101: Boldly Surviving” — top tips for caregivers
- “Feel Empowered while Caregiving” Webinar on Tuesday, Sep 19 2017
- “Managing Advanced Parkinson’s” – Professional Caregiver Training Notes
- Caregiving tricks (The Caregiver Space)
- “Hard-Won Advice in Books on Aging and Elder Care” (NYT)
- Benefits of palliative care, and list of palliative care programs in Northern California
- “You’re Sorry for Someone’s Loss. But How Do You Say It?” (NYT)
- “Caregivers and Grief and Loss” Webinar, Aug 29
- “Mourning the Imagined” – anticipatory grief (Caregiver Space)
- Brain Support Network Photo/Video/Recording Release
- “Caregiving With Siblings: Your Questions Answered” (Next Avenue)
- “Role Reversal: Taking Care of Older Loved Ones” – Webinar Notes
- “A Stranger in My House? No Way!” (when someone refuses care)
- “19 Water-Rich Foods That Help You Stay Hydrated”
- “How to Take Care of Others Without Burning Out”
- “Even healthy people need a living will, but many people don’t want to think about it”
- “Five Tips for Care Partners”
- Drawing and using a care map (Atlas of Caregiving)
- 13 ways to practice self-care as a caregiver (CareGiving.com)
- Apathy – description and treatment
- “How to Improve Resilience in Midlife” (NYT)
- “Recording a Legacy: How to Create a Life Journal”
- Eight medical alert systems worthy of consideration (Reviews.com, February 2017)
- “11 Signs It Might Be Time for Assisted Living”
- “Caregiver Burnout: What it Means, and How to Cope” (Caring.com)
- “What Happens To A Marriage After Parkinson’s”
- “Avoiding Caregiver Isolation” – notes from talk (CaregiverTeleconnection)
- “The Pain of Caregiving” (essay in STAT)
- “Drawing Personal Boundaries in Caregiving”
- “Top 3 Excuses From Siblings Who Don’t Help With Caregiving”
- Prepare one-pager of medical info to ease an ER visit
- Five “ponderable thoughts” about grabbing “a second chance to live life”
- “Getting It Right At The End Of Life”
- “3 Medical Laws All Caregivers Should Know About”
- “Survival Skills for Stressed Out Caregivers” – the STOP process
- “Caregiver Survival Tips” by an MD
- “A Navy SEAL explains 8 secrets to grit and resilience”
- “How Caregiving Changes Us – What Dies, What Grows”
- Five steps for shared caregiving (The Caregiver Space)
- “How to Build Your Own Geriatric Team” (WSJ)
- “How to Stay Sane and Healthy” as a Caregiver
- “New Technology Could Allow You or Your Parents to Age at Home” (AARP list)
- July 2017 Parkinson’s Support Group Meetings – Guest Speakers – NorCal + Central CA
- “Moving to a New Place” – chapter 16 of “Caregiver Helpbook”
- “Hiring In-Home Help” – chapter 15 of “Caregiver Helpbook”
- 5-minute breath meditation audio
- “‘Like Groundhog Day’: The challenges of caring for an aging parent”
- “Grief before death – understanding anticipatory grief”
- “Some Seniors Just Want To Be Left Alone, Which Can Lead To Problems”
- “The Five Love Languages of Caregiving”
- “Can Adult Siblings Get Along When Caring for Parents?”
- “Where Is the Line Between Caregiver Stress and Burnout?”
- “I can’t be ON all the time” (Caregiver Space)
- A story about how grieving begins “with the knowledge of our mortality”
- “The Emergency Medical File Every Caregiver Should Create”
- Book Review: “Connecting Caregivers: Answers to the Questions…”
- “Why You Need a Health Care Proxy and How to Choose One”
- “9 Ways Caregivers Can Recharge” (via respite care)
- “Caring For A Loved One? Care For Yourself, Too” (KHN)
- “Coping with Caregiver Role Changes” – Notes from talk
- Highlights from Oprah Interview with BJ Miller, MD, Hospice Expert, on Living
- Lifting Techniques for Home Caregivers
- “Do as I say, not as I did” in building your care team
- “Caregiver stress: Tips for taking care of yourself” (Mayo Clinic)
- “3 Kinds of Grief Nobody Talks About” (by Ken Doka, PhD)
- “Stress Symptoms, Signs, and Causes: Improving Your Ability to Handle Stress”
- What is a patient advocate and how can an advocate help?
- “Relaxation Techniques for Stress Relief” (HelpGuide.org)
- “Family Caregivers in the Workplace” – chapter 9 of “Caregiver Helpbook”
- “Caregiving isn’t for wimps” (The Caregiver Space)
- “What does it mean to be resilient? How to stay strong, no matter how tough it gets”
- “How to Stay Empathic without Suffering So Much” (Greater Good Science Center)
- “Recommended New Books for Those Who Are Grieving” (WSJ)
- “Spouses and Partners as Family Caregivers” – chapter 8 of “Caregiver Helpbook”
- “Coping with Grief and Loss: Understanding the Grieving Process and Learning to Heal”
- PREPARE website – another tool for advance care planning
- Bay Area Organizations to Donate Equipment/Supplies and to Borrow Equipment
- 12-question caregiver burnout quiz
- Palliative care at any stage and earlier conversations about patients’ goals
- “Making Tough Caregiving Decisions” – chapter 7 of “Caregiver Helpbook”
- Metaphors for self-care and guilt vs. regret – notes from caregiver conference keynote
- “Caregiver Burnout: 10 Ways to Manage Caregiver Stress”
- “Living Guilt Free” – notes from one-hour talk
- “Women’s Friendships, in Sickness and in Health” (NYT)
- “Mastering Caregiving Transitions” – chapter 6 of “Caregiver Helpbook”
- “Respite Care: Finding and Choosing Respite Services”
- “Grieving Before A Death: Understanding Anticipatory Grief”
- “How do we cope with anger as a caregiver?” (Caregiver Space)
- “Learning from our Emotions” – chapter 5 of “Caregiver Helpbook”
- “13 Secrets that Make Caregiving Easier” (AgingCare.com)
- “About to burn out? Try this.” (Caregiver Space)
- “How to have a better death” and “A better way to care for the dying” (Economist)
- Swallowing Difficulties and Medicines – Free Online Course
- “Self-Diagnose Successfully” and Research Resources
- Compassion fatigue – explanation and how to avoid
- Be prepared to answer “What are your goals for your care?”
- “Guilt vs. Grace” – extending grace to ourselves (caregivers)
- “Caring for Aging Parents – Difficult but not Impossible”
- “7 in 10 Will Need Long-Term Care. Will You?” (NextAvenue)
- “Communicating Effectively in Challenging Situations” – chapter 4 of “Caregiver Helpbook”
- “Why we Need to Stop Saying, “I’m Sorry For Your Loss” (Elephant Journal)
- “Shapeshifting: Husband to patient, wife to caregiver” (by The Perfect Servant-nope)
- “Communicating Effectively with Others” – chapter 3 of “Caregiver Helpbook”
- “Reducing Personal Stress” – chapter 2 of “Caregiver Helpbook”
- “Taking Care of You” – chapter one from “Caregiver Helpbook”
- ProPublica’s Vital Signs Project, including standing with federal health programs
- “Pressed Into Caregiving Sooner Than Expected” (about adult children caregivers)
- “Playbook For Managing Problems In Last Chapter Of Life” and planyourlifespan.org
- “Dying to Know: What Patients/Families Want to Know about End of Life Care”
- “The stigma of a neurologic disorder can be stressful” (Neurology Now)
- “Polypharmacy and the Health of the Elderly” – Lecture Notes
- “Everything Is Awful and I’m Not Okay”
- “Beyond the Bucket List” and The Unprepared Caregiver
- Ongoing Traumatic Stress Disorder (suffered by 24×7 caregivers)
- “Caring for the Caregiver” (don’t forego enjoyable activities)
- Palliative care and hospice explained
- Five E’s of empowered living with chronic illness
- “Informed Patient? Don’t Bet On It” (New York Times)
- “Finding New Meaning in Your Living After a Loved One Dies”
- “11 Things You Should Never Say To a Caregiver”
- “Tax Breaks for Caregivers”
- Tips for fall prevention in the home
- 4 Key Questions to Ask if a Senior Family Member Refuses Care
- How to have hope? (some ideas from those with PSP)
- Talk on aging by Stanford Internist – Notes
- “8 Extraordinary Things You Need to Know About People With Chronic Illness”
- “When Looking For A Nursing Home, You May Get Little Help From Your Hospital” (KHN)
- “Medicare’s Coverage of Therapy Services Again Is In Center of Court Dispute” (KHN)
- “How To Make A Home Much More Friendly To Seniors Using Wheelchairs Or Walkers” (KHN)
- Instructions for moving a patient from bed to wheelchair
- “Everything You Need to Know About Caregiving for Parkinson’s Disease” – Book Review
- “Worker Bees, Watchers & Talkers~ Which Kind of Caregivers Are You?”
- “The Right Way to Fall” (New York Times)
- “Exercise Can Be a Boon to People With Parkinson’s” (NYT)
- “Documents Prepared Families Cannot Ignore”
- “Last Dance at the Savoy” – memoir by a caregiver
- Paying for caregiving expenses
- “Put End-Of-Life Wishes At The Top Of Your To-Do List”
- “Some say that illness is morally improving, others that there is nothing good about being sick.”
- “Who Will Care for the Caregivers?” (NYT)
- “Finding Your Voice as a Patient Advocate: A Bed’s Eye View”
- “On Living” – new book by hospice chaplain
- Article about a woman who lost her mom to PSP and her dad has re-married
- Parkinsonism still not covered as part of new federal rule on Camp Lejeune
- “Eight Rules To Become A Smarter Patient”
- “When Bathroom Runs Rule the Day (and Night)”
- “Patient’s Playbook” third part – What to do when serious illness strikes (book reviewe)
- “Five simple steps to avoid becoming a medical mystery”
- Nursing home residents gain more power (Washington Post)
- “Patient’s Playbook” second part – Experts and Emergencies (book review)
- “The Patient’s Playbook” first part – How to be Prepared (book review)
- Sweet story about the value of online support groups
- Expert Physical Therapist – Fall Prevention, etc. (Highlights of 48-min Video)
- “Shining A Light”: Actress Kimberly Williams-Paisley on Caregiving
- “Worried about your aging parents? How to have ‘The Talk’”
- Caregivers should prepare for weather emergencies/natural disasters
- Developing a “care map” (notes from caregiver conference session)
- “Slow Medicine Movement” (notes from keynote)
- Report on family caregiving in the US
- Key questions to ask or key info to share about future care (caring.com article)
- “What To Do When Your Parent Says They Want To Die”
- Big changes needed so we can spend our final months at home
- New Technology Could Allow You or Your Parents to Age at Home
- “Elder orphans” band together for support and advice (USA Today)
- “The Cure for UTIs? It’s Not Cranberries” (NYT)
- Difference between in-home care and home health
- “Hospitals struggle to address terrifying, long-lasting ‘ICU delirium'”
- “Life Hacks,” “Technology Assistance,” and other caregiving suggestions
- Six Stages of Caregiving
- When Should You Become Your Aging Parent’s Health Care Advocate?”
- Nobody Talks About These 2 Reasons for Caregiver Stress
- “Making a living will is a good idea. Telling people about it is even better”
- ABCs of Medicare; open enrollment starts Oct. 15
- “What It Feels Like to Die”
- Caregiving resources for advanced Parkinson’s (from NPF)
- “The thing that caregivers fear most”
- “Tough Love: Succeeding as a spousal caregiver”
- “The Life-Changing Magic of Choosing the Right Hospital”
- “Mission creep doesn’t benefit patients at the end of life” (Washington Post)
- “Tips for talking with your doctor”
- Work-arounds at home for safety, ease-of-use, etc. (NY Times, 8-15-16)
- Keeping & Organizing Medical Information (tips for caregivers)
- Risks of polypharmacy during and after a hospital stay (Washington Post, 8-15-16)
- Six tips for care professionals on handling difficult families
- After caregiving (when a loved one dies)
- Confusion between palliative care and hospice care
- Self-Care Assessment Worksheet
- “When Dressing Is a Challenge” – adaptive clothing (WSJ, 7-7-16)
- Medicare and Medi-Cal recipients unaware of “advance care planning” benefit
- “How to Get the Best Care From the Hospital Nursing Staff” (Wall Street Journal, 7-4-16)
- “What Doctors Know About How Bad It Is, and Won’t Say” (NYT, 7-1-16)
- Nursing homes phasing out bed/chair alarms, fall mats, and low beds
- “Soapbox” suggestions for caregivers from Bill H. (of Atlanta)
- “Long-Term Care Insurance: How to Choose It”
- “Hospital discharge: It’s one of the most dangerous periods for patients”
- Dangers of Polypharmacy
- “Caring for baby boomer parents while raising small children”
- “Promise you’ll never put me in a nursing home”
- MD’s advice about getting “successful medical care” in and out of the hospital
- Article about Oncologist Using Oregon’s Dying with Dignity Legislation
- “What you can do to keep the doctor-patient relationship healthy”
- Short excerpt from “Being Mortal”
- “Family Caregiving Isn’t Easy: Emotional Management Tips”
- Partnering with physicians, etc. (Dr. Nancy Snyderman)
- Stay Current with Email Updates
- Only Brain Autopsies Deliver Certain Diagnosis
- Get Educated About LBD/DLB, PSP, MSA, and CBD/CBS
- Over 50% of Diagnoses by Neurologists Are Wrong
- Northern California Support Group Meetings
- Plan Ahead For Brain Donations
- Human Brain Tissue Is Essential to Neurological Research
- Emergency alert systems (Consumer Reports comparison)
- Free Medicare Program and “When to Take All Those Pills” (NY Times, 12-18-15)
- “Long-Term Care Insurance Can Baffle, With Complex Policies and Costs”
- “Over-the-Counter Medicines’ Benefits and Dangers” (NYT, 11-30-15)
- “The Caregivers’ Guide to Sainthood” (New Yorker, 12-5-15)
- Special Report on Caregiving, including article on tech gadgets (AARP Bulletin, Nov 2015)
- Finding a recommended hospice agency
- Unconventional Grief: Grieving someone Alive
- California Right to Die Law
- “Caregiver Dementia: Oh Yea, It’s Real.” (US News)
- “The Underbelly of Grief”
- SF Bay Area Home Health Agencies Rated on Medicare Site
- New Medicare Quality Ratings of Home Health Agencies
- Coping with cognitive changes – some suggestions
- “Coping with Caregiver Guilt: how humor and respite can help” (US News, 5-22-15)
- “Are You Grieving” (a checklist)
- “Living with uncertainty” and “When the worrying won’t stop”
- “Tips for health and sanity that every caregiver needs”
- Resource for Advance Care Planning – lifecareplan (Kaiser)
- More on “The Conversation Project” (End of Life)
- “Finding Joy in My Father’s Death” (NYT, 2-27-15)
- Complicated grief and how to avoid it (NYT, 2-16-15)
- Four Caregiver Coping Strategies
- Medical Treatments – Potential for Benefit and Harm
- “When should I start thinking about hospice care”
- “How long have I got left?”
- Ambivalent About Your Role as Caregiver?
- Tips – Hand Apraxia, Adaptive Equipment, Eating, etc. (Sharon Comden, 9-5-14)
- Adaptive equipment, personal hygiene, clothing, eating, communicating, etc. (Sharon Comden, 9-5-14)
- Two Pneumonia Vaccines Recommended by CDC
- 100 Things That Must be Done by the Survivor
- Three Good Lists of Things to Do When a Loved One Dies
- Webinar on CA’s Revised POLST Form (going into effect on 10-1-14)
- Getting the low-down on nursing homes (in California especially)
- “A new normal” – 10 things learned about trauma
- “Exploring Positive Psychology in Caregiving” (Webinar, Thurs 6-26, 11am CA time)
- Helpful Reading List about Grief
- Questions to Ask When Selecting a Hospice Agency
- “Caring for the Greatest, Muhammad Ali” (AARP Bulletin, June 2014)
- “Coping with End of Life Issues” (Lauren’s notes, 5-29-14)
- ‘I Don’t Want Jenny To Think I’m Abandoning Her’: Views On Overtreatment
- “15 Ways to Have a Memorable Funeral on the Cheap”
- “What to expect when you call an ambulance” (Washington Post)
- “Navigating Negativity” Webinar Notes and Other Resources from Janet Edmunson
- “Caregiving Packet” – good checklists and good info
- New Way to Pay for Long-Term Care? (sell life insurance policy)
- Neuropsychologist talks about resilience in PD (16 minutes – online audio program)
- Move before there’s a crisis
- Aid and Attendance Benefit from the VA
- Anti-constipation recipes (from MSA support group)
- “Details of the Heart” (requests made by a person with health issues)
- Eight “cures” to reduce suffering and cost of dying (SJMN, 12-29-12)
- Contemplative Caregiving (NYT, 1-11-13)
- “Cost of Living Longer” (WSJ 10-26-12)
- “The Most Important Conversation You’ll Ever Have”
- (End-of-life) Conversation Starter Kit (NYT, 8/17/12)
- “A New Look at Living Wills” (WSJ, 6/8/12)
- “Among the Very Ill, Confusion About Life’s End”
- “Should You Purchase Long-Term-Care Insurance?” (WSJ)
- “Seeking the Line Between Grieving and Depression” (WSJ)
- Discovering The True Cost Of At-Home Caregiving (NPR story)
- Economic Impact of Caring for Relatives (NPR interview)
- “Preparing For A Future That Includes Aging Parents” (NPR)
- Helping caregivers “find their way back into society”
- Beers Criteria – what medications older adults should avoid or use with caution (updated March 2012)
- “Really? Constant Stress Makes You Sick” (NYT)
- “The Caregiving Wife’s Handbook” – coping strategies
- “Everyday Law for Seniors” – updated book
- “Don’t Grow Old Without It” (long-term care insurance)
- American Pain Society’s Centers of Excellence
- “The 36-Hour Day” – Highlights for All Caregivers
- Using bidet toilets or seats for older people (NYT)
- Advice from a caregiver about things to do following a loved one’s death
- “The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life” – new book
- “Caring for the Caregiver”
- Compassion Fatigue – Article and Websites
- Travel Johns (gel urinal)
- “Types of Care”- adult day programs, care facilities, etc.
- Treating blood pressure, bladder, constipation, etc. – article by Dr. Golbe
- Various calculators for estimating prognosis for seniors
- “Caregiving as a risk factor for mortality” (1999 article)
- “Life at the end, caring in the face of loss” – Notes from video
- MDs know limits of treatment and the need to plan
- “Never too soon to talk about the future; it can be too late quite suddenly”
- Caregiver guilt (excerpts from a book on caregiving)
- “Web-Savvy Caregiving: Using the Internet to Care, Connect, and Cope”
- “Let Go” (poem)
- 25 Documents You Need Before You Die
- Ten important questions to ask your parents
- “Caregiver Burnout” – notes from PBS video
- “How to Care for Aging Parents”- Highlights from Introduction
- Caregiving tips from PSP caregiver
- Tasks associated with losing a loved one
- Losing a Parent Comes With Tasks
- Book – “Mindfulness: An Eight-Week Plan For Finding Peace In A Frantic World”
- Suggestions for sharing the neuropathology report
- POLST – Genl Info and 1/11/12 Lecture
- Helping protect your aging parent from financial pitfalls
- 6 Things Never to Say to a Sick Friend + 4 Things…
- FDA Safety Communication – PPIs
- Recall of Citalopram, etc.
- Things one caregiver learned along the way
- Online Resources and Suggested Books for Advance Planning and End of Life
- “Role of Palliative and Hospice Care” in Lewy Body Dementia
- “Dealing with Drooling” (Neurology Now article)
- “8 Life Issues You’re Bound to Face When Caring…”
- “The Role of Caregivers in Parkinson’s” – lecture notes
- “When Sleep Apnea Masquerades as Dementia”
- A husband’s perspective on caring for his wife
- “Acupuncture, Real or Fake, Eases Pain”
- Loss of self: one aspect of being chronically ill
- Reacting to tragedies of others (NYT article)
- “Spousal caregivers confront brutal challenges”
- “Should we have a family meeting?”
- Disabled Travelers Guide to the World
- “Encouraging Comfort Care” publication and checklist for families
- “The Caregiving Boomerang” by Gail Sheehy
- “Spouses Face Hurdles When Caring…”
- Speech and Swallowing Q&A – 5/13/10 Webinar Notes
- Physical Therapy Q&A (Webinar Notes, 4-8-10)
- Water content of fruits, vegetables, etc.
- FDA Looking Into Stalevo and Possible Increased Cancer Risk
- “Shortage of Nurses Means Death After Hip Fracture”
- “Letting Go of My Father” – terrific article on caregiving
- Two hospice misconceptions – according to an MD
- ElderCareLink, interviewing agencies, working with aides
- “Picking a Nursing Home” article including a list of ombudsman contacts
- “Balance & Eye Movement Training”-WebinarNotes
- “Caregiver Burnout” – Facts, Questions, Resources
- Hospice webinar, 2/18 evening
- Planning for long-term care (AARP Magazine article and PDF webinar)
- Anticipatory Caregiver Grief
- Gizmo, Care Status System, and New Caregiver Website
- Hospice RN Bill Carroll’s great article on when hospice should be contacted
- Advance Directives – Link to Neurology Now Article and Robin’s Resources
- Anticipatory Caregiver Grief- Nov 09
- Caregiving with Love through Neurodegenerative Disease – Webinar Notes
- Speech/voice exercises (by Rose Chable, SLP)
- Caregiving Webinar with John Burhoe – Notes
- Any way to prevent father from getting up?
- “Light in the Shadows: Meditations While Living with a Life-Threatening Illness”
- “Taking Care of Our Parents”
- Recall of Nitrofurantoin (Macrobid) Capsules
- FDA Orders Black-Box Warning for Botox (4/30/09)
- “A Life Worth Living” – Radio Interview and Book
- “Treating an Illness Is One Thing. What About a Patient With Many?”
- FDA warning – transdermal patches with metallic backings
- Foster independence and offer respect (advice for caregivers)
- Off-label drugs – use and need to study 14 of them
- The New Face of Caregiving: Male Caregivers
- “Learning to Be Good Enough” as a caregiver (NYT)
- POLST, DNR, Advance Health Care Directive, etc.
- “Tools for Meal Time” – good article on dysphagia
- Resources and Tips from Occupational Therapist
- “Handbook for Mortals”
- How MDs complete death certificates and “old age” not a cause of death
- “Why Doctors Make Mistakes” Article
- The Sandwich Generation (story of one challenged family)
- “The Car Key Conversation”
- “Driving Safety with Parkinson’s and Parkinson’s Dementia”
- UCSF on YouTube- Videos on Caregiving Tips, Value of Autopsy
- Do people near the end “starve to death” or “die of thirst”?
- End of Life: Helping with Comfort and Care
- FDA Warning on Botox (2/8/08)
- “Doctor is touched by…woman’s devotion” to her husband with locked-in syndrome
- “Caring for the Caregiver,” AARP Magazine, Nov/Dec
- “Skin so sad” – article about seborrheic dermatitis, etc.
- “Taking Care of Your Parents — and Yourself”
- Palliative Care and PD (presentation by Susan Heath, RN)
- Purchasing a clock
- Tips for Caregivers – Dr. Andrew Weil
- eMedicine on feeding tubes + some personal info
- “Strategies for Managing Home Care Workers” Article
- Pain Resource List (from PBS Frontline “Living Old” program)
- Preventing caregiver stress and depression
- Alternative Therapies & Parkinson’s Disease
- Constipation- Ideas from Bay Area Support Group
- Long Term Care Insurance- Some Useful Pubs/Resources
- “Health Challenges & Recommendations for the Older Adult”
- Suggested gadgets (utensils and bed canes)
- Points from an expert physical therapist – on PD and parkinsonism
- Free Recordings or Tapes – National Federation of the Blind
- “What Caregivers Need to Know” (Claire Berman article in Parade Magazine)
- Caregiver Grief Triggers Mixed Emotions
- Category: CBD
- PSP/CBS Research Update Webinar with Dr. Adam Boxer – Recording and Slides
- Save the Date – June 29, 2024, PSP/CBD Symposium, Hybrid
- 2024 PSP/CBD (those with diagnosis) Virtual Local Support Group Meeting Dates
- CurePSP Wellness Workshop: Holistic Wellness for PSP, CBD and MSA
- Symptoms and biomarkers predicting mortality in parkinsonism
- Urinary dysfunction (urgency, frequency, nocturia) – webinar notes
- Sleep and Parkinson’s – Webinar notes
- “What a Pain! Understanding and treating pain in Parkinson’s” – Webinar notes
- “Freezing of Gait: why and how?” – Lecture notes
- “Neuropsychological symptoms of Parkinson’s disease” – lecture notes
- Frontotemporal degeneration (including PSP and CBD) – Webinar notes
- How mood and cognition affect Parkinson’s – Webinar notes
- AFTD Webinar CBS/CBD: Basics & What You Need to Know
- UK TV show has character with corticobasal degeneration
- 2020 Brain Support Network Local Caregiver-only Support Group Meeting Dates
- Red flags suggesting atypical parkinsonism, and treatment of DLB, MSA, PSP, and CBD
- “FTD talk” fact sheets on PSP and CBD plus BSN’s top resources lists
- “Evaluating/Treating Urinary Issues in PD, MSA, etc” – Webinar Notes + Recording
- “Evaluating and Treating Urinary Problems in PD, MSA, etc” – Webinar on August 23rd
- “Treating PSP, MSA, and CBD – What can be done?” – Webinar Notes, Recording + Resources
- “Treating PSP, MSA, and CBD – What can be done?” Webinar Scheduled for February 27th
- 2019 Brain Support Network Local Caregiver-only Support Group Meeting Dates
- Support Brain Research With Your Donated Stock
- CurePSP and Mayo Clinic, June 2018, Conference Videos
- Cancelled – “What If It’s NOT Parkinson’s?” Webinar on Tuesday, June 12th
- SHARE program available to some caregivers in the Bay Area
- “Across the Spectrum: PD and Other Movement Disorders” (LBD, MSA, and PSP) – Notes
- Conference Video and Notes – PSP+CBD Research Update and Practical Conference
- Agenda – October 28th PSP/CBD Research Update and Family Conference
- Register Now! Sat, Oct 28, PSP/CBD Research Update and Family Conference
- Use of donated brain tissue in research
- Carbonated liquids may help swallowing dysfunction (small Swedish study)
- PSP and CBS excerpts from curriculum on dementia for healthcare professionals
- Save the Date! Saturday, October 28, PSP/CBD Research Update and Family Conference
- June 2017 Parkinson’s Support Group Meetings – Guest Speakers – NorCal + Central CA
- Short descriptions of four atypical parkinsonism disorders on MJFF website
- Urinary Problems in PD – Webinar Notes
- FTD Disorders Registry is now live
- Excerpts on PSP and CBD in “The Dementias” (NIH online-only booklet)
- “We Will Go On” Blog by Dan Brooks
- Supranuclear gaze palsy occurs in more than just PSP
- Short podcast on Parkinson’s Plus conditions with Dr. Golbe
- Facial Masking – Blog and Podcast Notes
- Podcast on brain atrophy in PSP and CBS with Dr. Boxer
- Blood Test to ID Who Has PD vs. PSP/CBD/MSA
- NORD study welcomes those with rare diseases to participate
- Notes from “Pain in Parkinson’s Disease” webinar
- 2017 Brain Support Network Caregiver-only Support Group Meeting Dates Set
- Very brief overview of five Parkinsonian syndromes
- “Pain in PD” webinar, Tues, Jan 10th, 10am CA time
- Educational video for neurologists – diagnosing (mostly) and treating PSP, CBS, MSA, and DLB
- Notes from CurePSP Scientific Affairs Update, 11-15-16
- CurePSP Announces 2017 International Research Symposium
- Parkinson’s Caregivers Summit, 9/19, 9am-3:30pm PT, via webcast
- Differences between PD and atypical parkinsonian disorders
- CBD Overview in Continuum, August 2016
- NPF overview of six atypical parkinsonism syndromes
- Baylor’s Overview of Atypical Parkinsonism
- Short descriptions of four atypical parkinsonism disorders (MJFF)
- Fox Trial Finder Expanding to Include Atypical Parkinsonism
- “What Are the Other Parkinsonisms?” Webinar, Aug 18, 9am CA time
- Is Parkinson’s and parkinsonism on the increase?
- Overview of atypical Parkinsonian syndromes – Johns Hopkins
- Economic Burden Survey – Costs in Last 12 Months (PSP and CBD)
- Therapeutic interventions in CBD (Italian paper)
- “When DLB, PD, and PSP masquerade as MSA” (Mayo autopsy study)
- “Atypical multiple system atrophy is a new subtype of frontotemporal lobar degeneration”
- Guide on how to diagnose CBD, etc. (Neurologic Clinics, Feb. 2015)
- Finding CSF biomarkers for parkinsonian conditions
- “Do You Have Parkinson’s Disease or a Parkinsonism?”
- Online Video of Research Update on PSP and CBD (UCSF’s MAC, Feb 2014)
- “Tips for Healthy Living” Webinar (resilience, quality of life, occupational therapy)
- Carbidopa/Levodopa Recall
- Partners in Parkinson’s event, Sat Aug 9, 8am to 3:30pm, San Mateo
- The Challenge of Obtaining an Accurate Diagnosis in FTD
- PSP, CBD, MSA, and LBD Research Going On in Northern/Central California
- Register Now – LBD, PSP, MSA, CBD Caregiver Symposium – Sat July 12th, Foster City
- PSP, LBD, MSA, CBD Caregiver Symposium – Sat 7-12, Foster City – Save the Date!
- Webinar on Swallowing and Dental Challenges (in Parkinson’s)
- PSP and CBD Research Update at UCSF, Sat. Feb 8, 8:30am-12:30pm, SF
- CBD Treatment – brief info (Neurology Study-Guide, October 2013)
- Two PSP/CBD clinical trials beginning in 8 months?
- PSP Association International Medical Workshop- Notes
- UK CBDer blogs about his journey
- Caution against unproven stem cell therapies (Parkinson’s, MSA, etc)
- PSP on “The Doctors” (3 minutes), CBD and MSA mentioned (7-11-13)
- Short Description of CBD and PSP (Northwestern Univ)
- Three Stanford Studies Recruiting PDD, PSP, MSA, CBD or healthy controls
- Criteria for the diagnosis of corticobasal degeneration – important new article
- Easy Trick to Distinguish PSP from PD
- Davunetide Study in PSP – Disappointing Results
- Big news in PSP community – genetics study finally published!
- Guide to PSP and CBD for General Practitioners
- Looking at MRIs of autopsy-confirmed PSP and MSA
- After SPECT scans, PPFG diagnosis changed to PSP or CBD
- NIH and FDA Rare Disease Day recordings
- Myoclonus rarely seen in PSP
- Oregon “Death with Dignity” Advocate Dies with CBD
- Parkinson-Plus Syndromes on emedicine
- Sharon’s Treatment Regimen for CBD (revised in 2012)
- Treatment Options for PSP, CBD, and FTD (Review)
- Differential diagnosis – PSP, CBD, MSA, DLB, and PD
- PSP, CBD, MSA, + LBD are approved for Compassionate Allowance
- “Rapidly Progressive” (3 Mos) Corticobasal Syndrome (CBS) Turns out to be Creutzfeldt-Jakob disease (CJD)
- Features of Corticobasal Degeneration Presenting as Corticobasal Syndrome or PSP-Richardson’s Syndrome
- The Multiple Phenotypes of CBS/CBD (Boeve article)
- Case report of 71 year-old woman with CBD
- Time to redefine the clinical diagnosis of corticobasal degeneration” (UCSF researchers)
- One patient thought to have NPH but had CBD
- PSP: “what’s new?” – 5 types
- Decision-Making Impairment May Precede Limb Apraxia (CBD)
- Hallucinations – rare in PSP and CBD
- “New insights” into CBD
- Review of CBD (Mayo)
- Adjusting to the diagnosis – 4/6/11 webinar notes
- Neurodegenerative disease misclassified as psychiatric
- Acalculia in 2 autopsy-proven CBD cases
- Clinical diagnosis of CBD; autopsy showed CJD
- “Applause sign” may be due to frontal lobe impairment
- ‘Bicycle Sign’ May Distinguish PD From Atypical Parkinsonism
- Case Report of CBDer with Alien Hand Syndrome
- Primary Progressive Aphasia- Notes from Weintraub Talk
- 24 Mayo Patients with CBS Diagnoses
- Excerpt from PSP/CBD Guide on Sinemet
- Dr. Litvan Webinar on CBD – Notes
- CBS and PSP listed in “Frontotemporal Disorders” booklet (NIH)
- Article on Stress and CBD (in new CBD Newsletter)
- PSP and CBD public service announcement
- Ocular Issues – DLB, PSP, CBS
- WSJ survey of research into PD and various proteins
- “Does corticobasal degeneration exist?”
- Using grape seed extract to treat PSP and CBD?
- Cholinergic deficits in PSP, CBS, etc
- Gastroparesis, Bowel Dysfunction, and Urinary Problems
- Why brain donation and why Mayo Jax?
- PSP, CBD, and MSA Conference – Extensive Notes (Nov 2009, Australia)
- Conference on PSP, CBD, and MSA (Australian conference, Nov 2009)
- Family history of parkinsonism or dementia in PSP and CBS
- Four new connections to PSP/CBD found in genetics study
- Dr. Boeve Webinar on PSP, CBD, FTD, and PPA – Notes
- Another haplotype discovered for PSP and CBD
- The Eye in PSP/Atypical Parkinson’s – lecture notes
- Correlations between language problems and brain pathology
- Dr. Bordelon’s webinar (11/5/09) – Notes
- Expert update on PSP/CBD genetics study
- Expert update on PSP/CBD genetics study
- Short update on PSP/CBD genetics study
- Making the Most of Life with a Parkinson-Plus Syndrome
- “Botulinum Toxin in Parkinsonism”
- Seizures in CBD: a case report (UCSF)
- Pathology of corticobasal syndrome predictable in life?
- Severe memory impairment in CBD patient
- Huntington’s discovery- it’s the protein,not the aggregation
- Neuropsychological decline in CBD and other FTLD subtypes
- “Corticobasal degeneration” (Current Treatment Options)
- “Things are not right since he/she left hospital”
- Progression of dysarthria + dysphagia in PSP, CBD, etc
- Behavioral disturbances in CBD and PSP
- Atypical Parkinsonism – Breakout session notes (3/12/09)
- New book by Parkinson’s Plus Patient Dan Brooks
- “Speech, Swallowing, and Mealtime” – Notes from 2/18/09 Webinar
- PSP/CBD Update – Diagnosis, Genetics, Treatment (Litvan ’07)
- Siblings/children of PSPers have motor+other deficits(’01)
- Advocate for NIH Funding
- Special SPECT to diagnose CBD, PSP, and PD (French research)
- Transcranial magnetic stimulation for PSP and CBD
- Ask the Doctor – diseases mistaken for PSP
- 5 CBD research grants; NAP is focus of UCSF, UPenn, MayoRoch
- “Tau forms in CSF as a reliable biomarker” for PSP
- Notes from PSP/CBD Webinar (10/14/08)
- Emotional and Cognitive Aspects of PD
- GI, Urological, Sexual and Other Functions – Dr. Pfeiffer’s talk
- Experimental AD drug that fights tau (not beta-amyloid)
- “Frontal-subcortical dementias” (PSP, CBD, LBD, and MSA)
- “The Vow” (Washington Post, 3/9/08)
- Overview of Atypical Parkinsonism
- Neuropathologic criteria for corticobasal degeneration (CBD)
- Applause sign (clap test) – updated research
- Visual Disturbances in PD
- Gastrointestinal and Urinary Dysfunction
- Progression of dysarthria + dysphagia in DLB, CBD, MSA, and PSP
- “Physician’s Guide to PSP” (Mentions of CBD and MSA)
- “Speech and swallowing in MSA and other autonomic disorders”
- April 2005 FDA Warning on Antipsychotics w/Dementia
- Differentiating CBD syndrome from PSP using brain atrophy patterns
- Category: End of Life
- “Brain Donation” – poem by Diane (with PSP)
- Genetic Testing Resources
- Advanced stage and end-of-life care – Webinar notes
- CurePSP Grant Process – PSP, CBD, MSA, and FTD
- “Common Myths Of Hospice Care Debunked”
- “Chicago Med” TV show had a PSP patient
- Messages “From Beyond the Grave Are Changing How We Grieve”
- Grief tests our resilience and teaches us more about life than death
- Serious Illness Conversation Guide and Family Communication Guide
- “Aid-in-Dying Laws Don’t Guarantee That Patients Can Choose To Die” (KHN)
- “Don’t wait till your dying words to say what’s most important”
- “One Man’s Quest to Change the Way We Die” (New York Times)
- Article on woman with ALS using California’s End of Life Options Act
- LBD is mentioned a couple of times in this story
- “What to say to the dying: A hospice chaplain offers some insight”
- Institute of Medicine – “Transforming End-of-Life Care”
- Is “death rattle” horrible for dying person?
- Signs of dying, from Buddhist hospice
- Brain donation hampered by red tape
- “Deciding to Die, Then Shown the Door” (NYT)
- “Gone From My Sight” – terrific online video+booklet
- “Terminally ill patients delay talk of hospice”-5/
- Randomized trial of palliative care vs. no palliative care for cancer patients
- “Letting Go: What should medicine do when it can’t save your life?”
- “Hard Choice for a Comfortable Death: Sedation” (NYT)
- Mayo Clinic Rochester Protocol and Shipping Instructions
- Preparing Ice and Utilizing Ice for a Brain Donation
- “A Short Stay in Switzerland” movie about death with dignity (and PSP) – coming soon
- “For many, ‘Do Not Resuscitate’ too painful to discuss
- Mayo Clinic Jacksonville Protocol and Shipping Instructions
- End of Life Issues Resource List (from PBS Frontline “Living Old” program)
- Category: FTD
- Remember Me FTD blog post about donating a beloved father’s brain
- Brain Donations to Support FTD Research, March 17 Webinar
- FTD and LBD – two early-onset dementias (NYT article)
- “Watching My Son Grow, and My Mom Return to Childhood” – article about FTD
- Brain Donation: It Takes Brains to Solve FTD
- Young-onset dementia: key pointers to diagnostic accuracy
- Same pattern of brain function loss in some dementia as in savants
- “Form of dementia suffered by Monty Python star Terry Jones is often missed by doctors”
- Notes from webinar on three non-AD dementias, including Lewy Body Dementia
- “Monty Python Star Describes His Illness: What Is Frontotemporal Dementia?”
- Webinar for healthcare professionals on 3 dementias, including DLB – April 6th
- “The PSP Chronicles” – blog by man in UK with PSP
- “Care Paradigm” – AFTD webinar takeaways
- “A Lesser-Known Dementia That Steals Personality”
- AFTD Series – First Person Accounts of Those with FTD
- Forbes Article About Professor with Primary Progressive Aphasia (type of Fronotemporal Degeneration)
- Spectrum of Frontotemporal Degeneration – 3/2/11 Webinar Notes
- FTD Webinar, Wed 3/2, noon CST, registration open
- Case Report: First Symptoms are Agitation/Anxiety
- Survival time is shorter in PSP than FTD (Dutch study)
- Study on caregiver burden, AFTD Newsletter Summer ’09
- “The Other Dementia” – SF Chronicle article about frontotemporal dementia
- “Applause sign” to diagnose PSP?
- Category: LBD
- LBD Peer Mentoring Support and Caregiver Education (PERSEVERE)
- Psychiatric Symptoms of LBD – Webinar Notes
- Sherry, with Lewy body dementia, shares her plea
- Seminario web sobre la demencia con cuerpos de Lewy – grabación y presentación
- Información en español sobre la demencia con cuerpos de Lewy
- Diagnosing LBD: Advances in Biomarkers – Register now for Feb. 29 webinar
- Seminario web sobre la demencia con cuerpos de Lewy, 28 de febrero – regístrese ahora
- Lewy Body Dementia Caregiving Symposium – Recording, Notes, etc.
- NYT: The Doyenne of Classical Publicists Takes on a Final Client: Herself
- Lewy Body Dementia Caregiving Symposium (Hybrid) – Oct 14, 10am-2pm PT – Register now!
- “Effectively Managing Medical Appointments” for Lewy Body Dementia – June 22 Webinar
- Recommended lifestyle changes in those with orthostatic intolerance
- Big News: PET Scan Detects Alpha-synuclein in Those with MSA (Alzforum)
- ‘How I First Knew Something Was Wrong:’ An Oral History of Early Dementia – 5 stories
- “A Patient’s Guide to Dementia with Lewy Body Disease” – UCSF
- “Lewy Bodies in Dementia and Parkinson’s Disease” Infographic (NIH)
- SPARK! Panel Featuring Dr. Bruce Miller and Brain Support Network – Recording and Resources
- SPARK movie screening + LBD caregiver panel discussion, Wed, June 30, 11am PT
- “Managing Blood Pressure in Parkinson’s” – Webinar notes
- “Behavior and mood symptoms in Lewy body dementia” – UCSF webinar notes
- “What is Lewy body dementia and how is it treated?” – UCSF webinar notes
- RBD (REM sleep behavior disorder) and other sleep issues – meeting notes
- Lewy Body Dementia – Panel and “Sue’s Story” (Nov 13, Los Altos)
- “Cognition in PD and LBD” – Presentation by Stanford MD (Nov 2018)
- “Psychiatric and Cognitive Complications in Parkinson’s” (Webinar Notes)
- Information Sheet on Dementia with Lewy Bodies (Stanford, 6 pages)
- Multiple System Atrophy and Cognition Webinar – Recording, Resources + Notes
- “Caring for Someone with Lewy Body Dementia” – Live Chat Notes
- Australian pop duo The Veronicas – mother with LBD and PSP
- “Lewy Body Rollercoaster” – Alzheimer’s Weekly
- Congratulations to “Sue’s Story”
- Capgras syndrome – almost 20% of people with LBD have
- “Unfortunate Irony Turns Renowned Scientist Into Caregiver For His Wife”
- Talk by Local Lewy Body Dementia Support Group Member on Coping
- Parkinson’s group meetings in January that may be of interest to Brain Support Network members
- “Dementia with Lewy bodies and Parkinson’s disease-dementia: current concepts, controversies”
- “PD and Psychosis” – Q&A Webinar Notes
- Recording, Resources + Notes from Orthostatic Hypotension in PD, MSA, and LBD Webinar
- Stanford/BSN Webinar – Orthostatic Hypotension in PD, MSA, and LBD, 9/18
- Sept 2017 Parkinson’s Support Group Mtgs – Guest Speakers – NorCal + Central CA
- Medications to Avoid or Use with Caution in Parkinson’s
- Aug 2017 Parkinson’s Support Group Mtgs – Guest Speakers – NorCal + Central CA
- Lewy body dementia excerpts from curriculum on dementia for healthcare professionals
- “Learning to live with Lewy” (Zionsville, Indiana)
- Webinar Notes – Hallucinations and delusions in LBD
- Lewy Body Dementia: Journey of Nick (Aiken Standard)
- Lewy Body Dementia Canada website, and Top 10 Priorities After an LBD Diagnosis
- Webinar on hallucinations and delusions in LBD, June 28th
- Short video on the science of Lewy Body Dementia – what is a “Lewy body”?
- Webinar Notes – Sleep Issues in LBD, MSA, and PD
- Sleep issues in LBD and MSA, Thursday 6/22, webinar
- “Dreams and Brain Disease: REM Sleep Cells Linked to Disorders”
- “Lesser known dementia, Lewy body, blurs lines of reality”
- Actress Dina Merrill had Lewy body dementia
- Who converts from Pure Autonomic Failure to PD, DLB, and MSA?
- Synucleinopathy: How Long You Live Depends on Which One You Have
- Neurological Disorders Playlist? (Dysautonomia Playlist)
- Shorter life span in MSA-P, DLB, and PDD compared to PD and controls
- Webinar on Sleep Issues in Parkinson’s, May 18, 9-10am (CA time)
- Son Joey’s video chronicles of his mom’s LBD journey
- Excerpts on LBD in “The Dementias” (NIH online-only booklet)
- “Lewy Body Dementia Caregiving – Insights & Experience” Seminar, April 19
- Johns Hopkins Overview of Dementia with Lewy Bodies
- Alzheimer’s Australia fact sheets on Lewy body disease
- Overview of LBD Symptoms and Treatment – Webinar Notes
- “The bad news: I don’t have Parkinson’s”
- Blogger who has Lewy Body Dementia
- Difference between LBD and AD, and how is LBD diagnosed?
- Comprehensive Approach to DLB – Notes from Webinar for Healthcare Professionals
- “Importance of Comprehensive Care and Support” in LBD, webinar on 2/15/17
- “The Common Dementia Condition You’ve Probably Never Heard Of”
- What is dementia with Lewy bodies? (Mayo Clinic Minute)
- DLB Overview from UK Medical Professional Reference Website
- Do Microbes in the Gut Trigger Parkinson’s Disease?
- Dementia with Lewy Bodies in Today’s Caregiver
- “The terrorist inside my husband’s brain”
- Short DLB Overview in Continuum, August 2016
- Update on nilotinib, including MJFF webinar on Tuesday, Aug 2
- Former Utah Jazz Coach Diagnosed with LBD
- Non-medication approaches to orthostatic hypotension from NYU
- Status of DLB and PDD Research
- “Pimavanserin Nears Approval to Treat Psychosis in Parkinson’s”
- “For Robin Williams, Diagnosis Came Too Late”
- “Pimavanserin Nears Approval to Treat Psychosis in Parkinson’s”
- “Why we missed the signs of my mom’s Lewy body dementia”
- Managing Orthostatic Hypotension (article for physicians)
- Definition of DLB (vs. PDD, parkinsonism)
- What is DLB? How Common? How to Detect? Why Bother with a Diagnosis?
- Overall heritability of DLB is 31 percent!?
- Good article about loving someone with LBD (Huffington Post, Nov 10, 2015)
- “Losing her mind and watching it go: the slow suffering of Lewy body disease”
- Three-Minute Test to Diagnose LBD?
- “What is Lewy Body Dementia” (11-6-15 Caring.com article)
- Article on caring for a mother with LBD (December 2014, Washington Post)
- Good overview of LBD in Wednesday’s Washington Post
- Robin Williams had Lewy Body Dementia
- “Living with Lewy Body Dementia” (US News & World Report, 9-22-15)
- “Living with Lewy Body Dementia” (US News, 9-22-15)
- Inadequate support given to DLB families, especially around the time of diagnosis
- Alzheimer’s Australia – Overview of LBD
- Big news- MSA seems transmissable, LBD does not, etc.
- Spinal fluid biomarker research – PSP v. MSA v. PD, and which PDers will develop LBD?
- Short brochure on neurogenic orthostatic hypotension (Lundbeck)
- Targeting Alpha-Synuclein (protein in MSA and DLB)
- Examples of difficulty “retrieving memories”
- “Her mother seemed to have classic dementia. Or did she?”
- Webinar on alpha-synuclein and Lewy bodies
- Robin Williams had Lewy Body Dementia
- “Lewy, Momma, and Me” Blog
- “Dad’s Not All There Anymore” – novel about LBD
- Primary Care Physician’s Perspective on LBD, Wed 7-30, 11am CA time, webinar
- Dreams and Lewy Body Dementia (Mayo Radio Minute)
- FDA Approves Droxidopa (to treat OH)
- Autonomic Dysfunction Webinar (orthostatic hypotension,, etc)
- New NIH Booklet on Lewy Body Dementia
- “Lewy Body Dementia: The Under-Recognized but Common Foe”
- Recommended book on DLB/PDD by Dr. Ahlskog – “Patient, Family and Clinician Working Together”
- Short Description of LBD (Northwestern Univ)
- “What is atypical parkinsonism and how does it differ from PD?”
- Early research of cancer drug (nilotinib)
- Short summary of Lewy body dementia (Johns Hopkins, 1-21-13)
- “Form of Dementia, Often Misdiagnosed” (NYT, 9-25-12)
- “Treasures in the Darkness”- new book for early stage LBD
- DLB – diagnosis, treatment, and management (review)
- “Mind, Mood & Memory” booklet
- Now 2 Autonomic Dysfunction Specialists in Northern CA
- Four Markers of Future Neurological Problems
- Explaining “high,” “intermediate,” and “low” chances of DLB
- Severity of Lewy body pathology in the brain
- Treatment of DLB and PDD – A Literature Review
- Overview of Lewy Body Dementia (2006, AlzOnline)
- Story in O Magazine about woman with Lewy body dementia
- Alpha-synuclein in spinal fluid isn’t a parkinsonism biomark
- Hypothesis that King Lear had Dementia with Lewy Bodies
- Treatment of dysautonomia in PD, MSA, DLB, etc.
- Improving diagnostic accuracy of PSP-P
- Dementia with Lewy Bodies – “Patient page. Not all dementia is Alzheimer”
- Dementia and hallucinations in PD related to age of patient
- LBD preceded by burning mouth syndrome
- New LBD Caregiver Blog
- “Cognitive Dysfunction in Parkinson’s” – Dr. Marsh presentation
- Overview of Lewy Body Dementia (2006, AlzOnline)
- Sleep Disorders Affect Majority of Elderly (Mayo Rochester)
- Can olfactory bulb biopsy distinguish PSP – MSA – PD?
- LBD- Clinical; PSP- Pathological
- French case report: probable DLB but autopsy confirmed CJD
- Management of Psychosis in PD, PDD, and DLB
- Neuroleptics and anticholinergics can be catastrophic in LBD
- American Family Physicians article on DLB
- “Dance of Loss” (article by LBD caregiver)
- Five Approximate Phases of Lewy Body Dementia (as seen by caregivers)
- (Full) Transcript from 3/28/07 LBDA Online Chat w/Mass Genl Neurologist
- Dementia with Lewy Bodies – eMedicine overview
- Gastroparesis – Symptoms, Evaluation, and Treatment
- LBDA on Surgery/Anesthesia
- LBDA on Excessive Daytime Sleepiness + Use of Provigil
- Category: Living with a Neurological Condition
- WAPO – Make this one lifestyle change to lower your Parkinson’s disease risk
- Stanford Health Care Offers Wellness Classes for Those with Neuro Disorders
- NYT: ‘You Think, So You Can Dance?’ Science Is On It.
- NYT: Cheng Pei Pei, ‘Crouching Tiger, Hidden Dragon’ Star, Dies at 78
- Rep. Wexton, confronting degenerative disease (PSP), finds her voice through AI
- “Hard Days: My Life with a Neurodegenerative Disease” (PSP) – Short book review
- 2024 MSA (those with diagnosis) Virtual Local Support Group Meeting Dates
- “On a Thimble” – poem about focus (by someone with PSP)
- “The swallow” – poem about a swallow study (by someone with PSP)
- Silver linings to Parkinson’s and other neurological disorders?
- “Advice for setting up a safe living situation in your twilight years” (WaPo)
- Parkinson’s Progression Slower With Sustained Physical Activity
- Prediagnostic PSP – symptoms appear almost 8 years before diagnosis
- Four hours/week exercise (even household chores) slows progression of Parkinson’s
- 7 Foods High in Water Content (Cleveland Clinic)
- “Fear of Falling” – poem by Diane (with PSP)
- Facebook’s Giving Tuesday match program – Help support our efforts at BSN (12/1/2020)
- Info on coronavirus for the Parkinson’s community – MJFF webinar notes
- “Sometimes Patients Simply Need Other Patients” (NYT)
- Using medical cannabis to treat PD – story of Frank De Blase
- “Affordable Options for Grocery Delivery”
- “Reframe Your Experience” (with a neurological disorder)
- “Marijuana and PD: What Do We Really Know?” – Webinar Notes
- Jackie’s example of a letter to family/friends to help them communicate better
- “Getting Sick Can Be Really Expensive, Even for the Insured” (NYT)
- Anxiety, Depression, and Apathy (in Parkinson’s) – lecture notes
- “Cannabis and Parkinson’s Disease” – Lecture Notes
- “Optimizing Personal Health Strategies to Manage Parkinson’s” – Webinar Notes
- “10 Tips for a ‘Common Sense Approach’ to Life With a Chronic Illness”
- Report on health brain aging summit; pathology explains only 40% of cognitive decline
- “How to Get Patients to Take More Control of Their Medical Decisions” (WSJ)
- “Whom Do You Tell When You’re Sick? Maybe Everyone You Know” (NYT)
- California stem cell agency “has funded just a trickle of clinical trials” (STAT)
- “The Stem-Cell Revolution Is Coming – Slowly” (NYT)
- New York – State law makes brain donation difficult
- StemGenex in SoCal and stem cell marketing hype
- “Why I Lived a Double Life While Dealing With My Chronic Illnesses”
- Study Says DNA’s Power to Predict Illness Is Limited
- “When Medicine Gets Personal: The DIY Clinical Trial”
- One patient’s approach to living
- Explaining fatigue – the “spoon theory”
- Lou Gehrig might not have had Lou Gehrig’s disease
- Hospital Delirium: one-third of those over 70; negative
- “Overlooking the Frail Years” with Binary Thinking
- Maintaining Hope (in living with Parkinson’s)
- “The Placebo Effect” (in Parkinson’s)
- Importance of PT + Exercise in Neurodegenerative Disorders
- “Make a Place for Your Illness And Put It in Its Place”
- Disclose early, find roses, and hope in Parkinson’s (2005 article by Daniel Stark)
- “Challenging the Odds: forget the prognosis” (Barry Bittman, MD)
- Category: MSA
- MSA Spark, January 22, 2025, 7am-11am PT – Register Now
- Mission MSA: Stages of Multiple System Atrophy (Medical Professional Version)
- Deep-Dive into Multiple System Atrophy (MSA) – Aug 29 webinar
- MSA Symposium (May 4, 2024) – Recordings, Slides, Notes
- Five Tips from Jon and His Father
- “Tips and Tricks” from Susan
- Exploring the Environmental Link to Multiple System Atrophy: A UCLA Study
- “My Treatment Approach to Multiple System Atrophy” – Mayo Clinic
- “The benefits of brain donation for multiple system atrophy” – Webinar recording
- The MSA Coalition 2nd Patient/Family Conference of 2020 (October 23-24)
- Palliative care discussions in MSA – when to have, what to discuss, etc.
- Registration now open – Multiple System Atrophy Conference, Sept 28-29
- Article about family coping with multiple system atrophy
- Highlights from International Congress on Multiple System Atrophy
- “Cognitive Impairment in Multi-System Atrophy: Is It Time to Update Diagnostic Criteria?”
- Letter to newly-diagnosed MSAers in “MSA in South Africa with Sonja”
- Does cognitive impairment occur in MSA? (Important Mayo Jax paper)
- Lack of sweating — worse in MSA-P than MSA-C but some nearly-normal
- “More Iowans face multiple system atrophy diagnosis”
- Mayo Rochester finally reports results from mesenchymal stem cell study in MSA
- “It’s all in your head” – MSA film part of Neuro Film Fest
- Teacher who lost the ability to walk, talk and care for himself gives one last incredible lecture
- Worldwide disease maps for PSP and MSA
- Predictors of survival in PSP and MSA
- Low blood pressure standing may hold the key to detecting pre-motor MSA
- UCSF continues to say that MSA is a prion disorder
- About 10% of patients diagnosed with PAF evolve to MSA, etc.
- MSA Overview from UK Medical Professional Reference Website
- 6% of Mayo MSA cases also had CTE
- MSA Overview in Continuum, August 2016
- “A Cautionary Tale of ‘Stem Cell Tourism'”
- “In about a year, MSA will kill Tommy Fitzgerald”
- Largest study of orthostatic hypotension in MSA
- NJ MSA Conference on Sat March 19 – Streamed Live Online
- Kerry Simon Obituary (with lots about MSA)
- Therapeutic advances and research update in MSA and PSP
- Local Case – Man Diagnosed with MSA During Life But X-ALD Upon Brain Donation
- Food stagnation and esophageal dysmotility in MSA
- New NIH Pamphlet on MSA (November 2014)
- Pain more severe and common in PD and MSA compared to PSP
- Guide on how to diagnose MSA, etc. (Neurologic Clinics, Feb. 2015)
- 33-question survey- what MSA Coalition should focus on?
- MSA Coalition’s 2014 Conference for Patients/Family
- “Kerry Simon’s Intensive Rehab Program”
- Kerry Simon Article with Lots About MSA
- Iron Chef is Battling MSA (Las Vegas Sun, 12/12/13)
- MSA Diagnosis and Treatment (Neurologist Study-Guide, Oct 2013)
- Dr. Wenning on MSA (informal video, June 2013, Australia)
- “Many Faces, Same Disease” – MSA Patient Primer (Univ of Florida)
- New “MSA Living with Us” Blog (by TN couple)
- Notes from Golbe Webinar on MSA (4-5-13)
- Very small safety study of mesenchymal stem cells at Mayo Rochester
- Emily talks about her dad with MSA (audio recording, Feb 2013, Raleigh, NC)
- Video of Colin Ketteringham with MSA
- “Gregor Wenning: unravelling the mysteries of MSA”
- New Forum Area of MSA Trust Website
- New (but not so active) Canadian MSAer’s Blog
- Interview with MSA Woman in Vermont
- Autonomic testing to differentiate MSA and PD
- “An Introduction” to MSA by Gary Rose
- Dopamine Transporter Loss Differs in MSA, PSP and PD
- 5-Minute Film about MSA
- Severe Autonomic Failure “Highly Predictive” of Autopsy-Confirmed MSA
- Pregnancy is associated with faster disease progression (MSA)
- Test cannot differentiate PD and MSA early-on
- Delayed gastric emptying in MSA
- Michigan man with MSA
- Economic Costs of PSP and MSA in 3 European Countries
- Song “Speak to Me” + Story Behind It
- Short Section of MSA in Perlman Chapter
- Painful stimuli in face differentiates PSP and MSA-P
- Lack of thirst distinguishes PSP from MSA-P and PD
- Clinical-pathological correlates in PSP (and MSA)
- Patterns of brain atrophy – PSP, MSA, PD
- MSA – Current and Future Treatments
- New 6-Page Pamphlet on MSA (Parkinson Society Canada)
- Cognitive impairment in PSP and MSA
- Study of depression, anxiety, etc in PSP and MSA
- FDG-PET for differentiating PD, PSP, and MSA
- Symptoms of clinical intolerance during an acute levodopa challenge in relation to MSA
- Concomitant PSP and MSA (4 Cases)
- Concommitant PSP and MSA (4 cases worldwide)
- “Clinical outcomes” paper – full paper available
- Ataxia, OPCA, and MSA-C Webinar with Susan Perlman, MD – Notes
- Recent developments in MSA (dementia?)
- MRI and MRS in PSP, MSA-P, PD (Brazilian study)
- Book recommendation: “AfterShock”
- Advice – Accept the diagnosis, forget the prognosis
- Brain-Computer Interface for Communication (60 Minutes10/31)
- Diagnostic criteria for MSA (“second consensus statement”)
- Explanation of statistics in “Clinical outcomes” paper
- “Clinical outcomes” paper – PSP and MSA
- Riluzole study – MSA+PSP
- New Zealand Pamphlet on MSA
- Treating incontinence by injecting muscle stem cells
- Drug treatment for orthostatic hypotension
- Journal article on MRIs to distinguish PSP, MSA, and PD
- Theoretical benefit of DBS with PSP and MSA
- PSP and MSA can occasionally co-exist
- Two distinct types of PSP – RS and PSP-parkinsonism
- Category: Parkinson's
- Diagnosing Atypical Parkinsonian Disorders (24-min podcast)
- Understanding Different Types of Dementia (AD, FTD, LBD, VaD) – NIH Infographic
- Topaz: Trial to Test a Drug to Prevent Hip Fractures in Parkinsonism
- “Purposeless groaning” in neurological disorders
- BSN Supporting Parkinson’s Research Plus Lyme Disease Research
- “Slew of Studies Tie Health and Lifestyle Factors to Parkinson’s” – Alzforum
- Depression and Parkinson’s disease – Webinar notes
- “Pain in Parkinson’s” – Webinar notes
- Inflammation and Parkinson’s – webinar notes
- Sept 2018, Speakers at Parkinson’s Support Group Meetings, Northern CA
- Pain and Fatigue in Parkinson’s – Webinar Notes
- Frank De Blase reports that medical cannabis did not help his Parkinson’s symptoms
- Treating depression and anxiety in Parkinson’s – webinar notes
- Feb 2018 Northern and Central California Parkinson’s Group Guest Speakers
- Apps to increase vocal loudness and improve fluency (speech therapist’s favorites)
- Technical webinar on microbiome research
- Complementary and Alternative Medicine Webinar – Notes
- Role of the microbiome in PD – webinar notes
- 2 main types of PSP have different FDG-PET scan findings
- Sinemet shortage in early 2011?
- MRI brainstem studies – 2 main PSP types and PD
- “Study: Brain energy crisis may spark Parkinson’s”
- Biomarkers summary article
- Planning for the End of Life: The Role of Hospice in PD Care
- Vietnam Vets, Agent Orange, and PD
- Combo CoQ10 + creatine – neuroprotective in PD mouse model
- Using eye saccade velocity to distinguish PSP-P and PD
- 2/3 evening, Frontline TV program on PD
- DBS in PSP – Study in Toronto
- Researchers Identify An Underlying Cause Of Pneumonia in PD
- Pain in PD
- “Coping with Dementia: Advice for Caregivers,” PDF
- Non-motor symptoms in PD- panel Q&A
- Visual Impairment in PD
- Back rash
- Dr. Andrew Weil on Using CoQ10 to Slow PD, etc
- “40 Years Later, Still No Cure” (for PD), Washington Post Article 3/4/07
- Article on Alternative Therapies and PD
- 3 Forms of PSP – RS, PSP-P, and PPFG
- “A Surprising Clue to Parkinson’s” (MIT Technology Review)
- NIH/NINDS Creatine Study Press Release
- Category: PSP
- Understanding PSP with Dr. David Shprecher – Recording and Notes
- Understanding Progressive Supranuclear Palsy – August 6 Webinar
- Short video on PSP – symptoms, diagnosis, etc.
- Congresswoman battling PSP delivers House speech using a text-to-voice app
- Major Genome Sequencing of PSP – BSN Contributed Greatly!
- Podcast by PT on treating PSP with physical therapy and palliative care
- Study for the Treatment of Disturbed Sleep in Progressive Supranuclear Palsy (PSP)
- Heavy metals contaminating the environment of a PSP cluster in France
- Progressive Supranuclear Palsy is part of “Zoey’s Extraordinary Playlist” (NBC)
- “Most of the important news in the world of PSP from 2018 and 2019” (Golbe)
- Moderate improvement in latency to a PSP diagnosis over 20 years (Golbe)
- Girl explains special meaning of butterfly (lost her grandmother to PSP)
- Sad story about woman with PSP who tells daughter to “remember me dancing”
- Video of man with PSP with messages to recently-diagnosed people
- Recording + Notes from “Diagnosing PSP” Webinar, August 2017
- Stanford/BSN Webinar – Diagnosing PSP, Wed, Aug 30, 2-3pm PT – Register Now!
- BSN’s Allan Marcus Fund Gave Six Grants in 2017
- Inheritability of PSP
- “Square patches of light remember you” – reflections on grandmother with PSP
- Hummingbird sign and Mickey mouse sign in PSP
- PSP mentioned on “Chicago Med” TV show
- Blog by Debra Ford, whose husband Dave has PSP
- Johns Hopkins Overview of Progressive Supranuclear Palsy
- “A Mother’s Strength” (article about PSP)
- PSP Overview – Video Interview with Dr. Irene Litvan
- 7-minute video about PSP
- Allan Marcus Fund for Families in Need with PSP – Announcement
- Article in Cosmo about Woman in her 30s Caregiving for Dad with PSP
- PSP Overview from UK Medical Professional Reference Website
- Treatment/Management of PSP – Facebook Live, Mon., Dec. 5, 3pm PT
- Canadian Gentleman Sort-of Blogging About PSP
- PSP story – “The Falls Were Bad. The Diagnosis Was Worse.”
- PSP Overview in Continuum, August 2016
- Short excerpt on PSP (from frontotemporal dementias document)
- Video of PSP Family
- Arkansas TV News Story About PSP
- Guide on how to diagnose PSP, etc. (Neurologic Clinics, Feb. 2015)
- “Tears in My Coffee: Living with PSP” (new ebook)
- “PSP: A Primer for the Newly-Diagnosed” (video)
- Cognitive and Behavioral Changes in PSP: Comparison of PSP-Parkinsonism with PSP-Richardson Syndrome
- 5 Types of PSP and Treatment (Neurologist Study-Guide, Oct 2013)
- Four Stages of PSP (PSP Association, UK)
- Allon announces PSP clinical trial results (davunetide)
- Case report of Pisa syndrome (trunk flexion) in PSP
- Autopsy-confirmed PSP case – symptoms for 24 years!
- Review of davunetide in the treatment of PSP
- Case Study of LA Man with PSP
- Biomarker confirmed PSP and symptom explanation
- “I was diagnosed with PSP in 2009” – what are the stages?
- Cytokines and neuro-inflammation in PSP
- Simulating Alzheimer’s (UK newspaper article)
- Nature Genetics – June 2011 Landmark Study PSP Genetics
- Constant groaning in PSP (case report)
- Quality of Life in PSP – Lower in Women, Depressed, etc/
- “New insights” into PSP
- PSP-related blog post by Florida woman
- List of PSP-like syndromes
- Article on PSP family in Pennsylvania
- Can hospice have a conversation about not eating/drinking?
- News story about Pennsylvania family coping with PSP
- Behavioral changes in PSP correlate with brain atrophy
- Distinctive features of saccades in PSP
- 5 Cases of Early Stage PSP (Pre-symptomatic)
- Davunetide Research Update (2/8/11 webinar)
- “Davunetide Research Update” (webinar, 2-8-2011)
- PSP: “new concepts” – summary article
- In vivo comparison of the two most common PSP types
- Eye movement disturbances
- Advanced MRI Techniques to Diagnose PSP
- Autonomic dysfunction in PSP (a few excerpts)
- Cortical atrophy differentiates RS from PSP-P
- Can patient be expected to remain at home?
- Nigel Dempster speaking about progressive supranuclear palsy
- “Limited case” for recommending ChEIs in PSP
- “Nigel Dempster – Life with PSP”
- Obsessive-Compulsive Behavior in PSP
- Apathy and sleep disturbance in PSP
- “How can I be sure it’s PSP?”
- Evaluating swallowing in PSP patients (German research)
- Visual symptoms in PSP and practical ways for helping a patient
- Neuropathology of PSP variants (Mayo research)
- Brain atrophy is different in RS and PSP-P
- Where in brain PSP may start (Japanese research)
- Disease-modifying therapies in PSP
- Analysis of speech in PSP vs. PD (German research)
- Dutch study- 152 PSP cases (20%=frontal presentation)
- PSP “drove us to open a shop”
- Images – Eye Movement Problems in PSP
- Good, short description of PSP
- “Balance & Eye Movement Training in PSP” – Webinar Notes 3-11-10
- Use of Requip and Mirapex in 3 Path-confirmed PSP Cases
- Using transcranial sonography to differentiate PSP-P and RS
- Hyposmia (poor sense of smell) in PSP
- No “familial aggregation” in PSP, one old study
- Participation in a PSP public service announcement
- Clinical aspects in frequent fallers with PSP
- Case Rpt- “Dramatic improvement” with Ambien CR
- Case report- PSP-P patient recvd DBS
- Man with double vision and dementia; PSP upon autopsy
- Using eye saccade velocity to distinguish PSP-P and PD
- “Living with PSP: Norma’s Story”
- PSP Research Update – Notes from Golbe Webinar (11/19/09)
- Nypta – treating PSP, so obtains orphan drug status
- No strong environmental risk factors for PSP
- Dr. Hermanowicz (10/8) on PSP – Webinar Notes
- Photos of PSP patient’s eyes over 4+ years
- Undiagnosed PSP patient who died after receiving Haldol
- “Making the Most of Life with a Parkinson-Plus Syndrome” – Webinar Notes
- Davunetide (aka, NAP, aka AL-108) trial now to focus on PSP
- No LRRK2 mutations in 88 PSP patients (Germany)
- Clinical heterogeneity in PSP (7 Japanese autopsy cases)
- Cerebellar involvement in PSP (22 confirmed patients)
- “PSP and PT” article in physical therapy newsletter
- Hypersexuality and PSP?
- “PSP Symptoms in a Nutshell”
- Five types of PSP and diagnostic challenges
- Improvement of gaze control after training/exercises
- Improvement in gaze control after training/exercises in PSP
- “Core body temperature rhythm is altered” in PSP
- Phosphate (including creatine) depletion in PSP
- Argyrophilic grain disease – Mayo brain bank description (2002)
- Brain Disorder Suggests Common Mechanism May Underlie Many Neurodegenerative Diseases
- Man with double vision and dementia; PSP upon autopsy
- Brigadier Michael Koe writes a book about his wife Sara Koe who had PSP
- Voluntary, spontaneous and reflex blinking in PSP
- “Unraveling PSP” article (by Houghton/Litvan)
- Giving PSPers balance exercises w/and w/o eye exercises
- Rare disease of PSP affects only 5 or 6 per 100,000 people
- ‘When I kept falling over, my wife said I was drunk’ – one man’s battle with PSP
- CJD-like Dementia in US Called “PSPr”
- German CoQ10 study results published
- Depression preceding the onset of progressive supranuclear palsy (PSP)
- Dr. Paul Donohue on PSP
- A call to rename PSP to “Richardson’s Disease”
- Short article on Mississippi politician who had PSP
- Rare variant of PSP – pallido-nigro-luysial degeneration
- Gaze Control and Foot Kinematics: PSPers Climbing Stairs
- PSP Blurb in Neurology Now, Nov/Dec ’07 (by Golbe)
- Indiana family struggling with rare diagnosis (PSP)
- Clinical Rating Scale for PSP
- 16 autopsied cases of PSP (Canadian research ’02)
- Rarest type of PSP- Pure akinesia with gait freezing
- Story of Pat Richardson (actress)- Natl Spokesperson for CurePSP
- Aricept and PSP (2001 study)
- PSP Research Study- NIH-Funded and Parkinson’s Institute is a Site
- Advance Notice: 4/8/06 PSP Family Conference
- PSP Overview – Parkinson’s Australia (2002)
- PSP Stages/Phases, by two caregivers (on the Johns Hopkins PSP Listserv)
- Dudley Moore’s symptoms of progressive supranuclear palsy (link to 20/20 interview)
- Category: Uncategorized