Presented during: PSP-MSA-CBD Caregiving Symposium
Symposium Co-Hosts: Stanford Movement Disorder Center and Brain Support Network
Date: June 14, 2025
Moderated by Candy Welch
Leader, Brain Support Network’s MSA Caregiver Group and Board Member
Panelists
PSP Caregivers –
Doug: Actively cares for his wife, Diane
Ellen: Cared for her mother, Nancy
MSA Caregivers –
Joan: Cared for her husband, Will
Kaly: Actively cares for her brother, Kevin
CBS Caregivers:
Diane: Actively cares for her husband, Jeff
David: Actively cares for his wife, Camilla
[Editor’s note: the “CBD” caregivers used the term “CBS,” corticobasal syndrome.]
Brief Summary – “PSP-MSA-CBS Caregiver Panel”
Summary by: Elizabeth Wong, Stanford Parkinson’s Community Outreach
A panel of caregivers, moderated by Candy Welch of the Brain Support Network, offered personal insights into the realities of caring for loved ones with progressive neurological conditions like PSP, MSA, and CBD. Each panelist—Doug, Ellen, Joan, Kaly, Diane, and David—shared their journey, detailing the initial, often misdiagnosed, symptoms of their spouses or family members, followed by the challenging progression of their diseases into severe physical and cognitive decline. The discussion touched on the overwhelming emotional and practical difficulties of caregiving, including the financial strain of out-of-pocket expenses and the complexities of navigating healthcare and social service systems.
Key themes included the importance of strong support systems (support groups, family, friends, professional caregivers), the mixed experiences with clinical trials, and the necessity of early engagement in end-of-life planning and advance directives while the patient can still communicate wishes. Panelists spoke candidly about coping with anticipatory grief and the profound personal growth and resilience fostered by their caregiving roles, highlighting the value of support groups and open communication about challenges faced.
Comprehensive Notes – “PSP-MSA-CBS Caregiver Panel: Insights from Caring for Someone with a Progressive Neurological Disease”
Notes by: Elizabeth Wong, Stanford Parkinson’s Community Outreach
The panel was moderated by Candy Welch, who leads the MSA (Multiple System Atrophy) caregiver support group and serves on the Board of Brain Support Network. Ms. Welch shared her personal experience caring for her husband, Bob, who suffered from MSA until his death in 2008. The MSA diagnosis was confirmed via brain donation (arranged by Brain Support Network).
The panel comprised six caregivers of those with PSP (Progressive Supranuclear Palsy), MSA (Multiple System Atrophy), and CBS (Corticobasal Syndrome). [Editor’s note: in fact, the “CBD” caregivers used the term “CBS,” corticobasal syndrome.]
First Symptoms and Diagnosis Journeys
Panelists recounted the often challenging paths to diagnosis:
Doug’s wife, Diane (PSP): Symptoms began in 2018 (age 74) with falls, balance issues (initially thought to be arthritis), and a significant car accident (driving over a median), indicating neurological problems. A Santa Cruz neurologist in 2019 identified a neurological disease but no cure/treatment, referring them to UCSF. Diane was diagnosed with PSP via Zoom in 2020, a diagnosis later confirmed by other UCSF doctors. The diagnosis profoundly impacted Diane, leading her to create and accomplish a “bucket list” of goals (travel to Italy, write a book, set up a website for her poetry/quilting, create a legacy video).
Ellen’s mother, Nancy (PSP): Living across the country, Nancy’s initial behavioral changes and a car accident were noted by caregivers for Ellen’s stepfather. A neurologist initially found nothing. After her stepfather’s passing, Nancy moved in with Ellen, who noticed slurred speech. A CT scan suggested frontotemporal dementia. A comprehensive assessment at UCSF confirmed PSP, based on observations like fall tendencies and eye movements. Nancy, a clinical psychologist, became deeply aware of her cognitive decline.
Joan’s husband, Will (MSA): Symptoms, including walking difficulties, were present for years and treated separately. A dramatic inability to walk at a Fourth of July parade prompted a neurologist visit. Initially suspected Parkinson’s, a movement disorder specialist later diagnosed MSA due to the ineffectiveness of Parkinson’s medication.
Kaly’s brother, Kevin (MSA): Symptoms appeared in 2019 with balance loss, falls, and gait changes. An initial neurologist suspected Parkinson’s. Two years later, after Kevin didn’t respond to medication and changed doctors, he was diagnosed MSA. Kevin has since exhibited significant MSA symptoms and progressive decline.
Diane’s husband, Jeff (CBS): Early symptoms (2016-2017) included extreme startling. In 2019, Jeff experienced hand pain and tingling (treated as tendonitis). A cycling incident in 2020, where he couldn’t unclip his foot, confirmed a deeper problem. Diane noticed cognitive and speech issues during the COVID-19 shutdown. After an initial neurologist suggested “early aging,” Jeff was diagnosed with CBS at UCSF after a lengthy process of elimination, ruling out MS and Huntington’s.
David’s wife, Camilla (CBS): Subtle initial symptoms included trouble with people responding to her and conversational lapses. She later experienced balance issues and fell asleep unexpectedly. A “total temporary amnesia” episode, where she was disoriented, prompted serious investigation. After a year-and-a-half process, specialists at Stanford diagnosed CBS.
Progression, Living Situations, and Therapies
The panelists shared the progression of their loved ones’ diseases and the impact on daily life:
Doug’s wife, Diane (PSP): Underwent physical, occupational, and speech therapy for several years, but this ended in early 2024 as it was no longer deemed effective for ongoing maintenance. She is now 100% bed-bound, eats with difficulty, struggles to open her eyes, and has significant communication challenges, making it hard to discern her awareness.
Ellen’s mother, Nancy (PSP): Her living situation drastically changed from an independent working widow to living in an ADU (Accessory Dwelling Unit) in Ellen’s garage. She eventually moved into the main house after a fall and increasing confusion and functional decline.
Home Help and Caregiver Management
Finding and managing home care proved to be a critical and often challenging aspect.
Joan’s husband, Will (MSA): Joan initially resisted help for daily tasks like cooking or laundry. However, a moment of extreme worry when her husband, still mobile with a walker, didn’t answer the phone, prompted her to seek someone to simply be present. She used two small, family-run agencies found through word-of-mouth. Care started as companionship and progressed to more serious medical care.
Kaly’s brother, Kevin (MSA): Kaly’s primary support comes from her family (husband, daughter). For paid care, she uses a “family caregiver” (a family friend) and two other caregivers. She found agency caregivers limited in scope (e.g., unable to take blood pressure or administer medication), leading her to prefer private caregivers. Kaly emphasized the importance of word-of-mouth referrals and direct interviews between caregivers and the care receiver to ensure good chemistry. She individually trains each caregiver, as schedules don’t overlap, stressing adherence to Kevin’s routines to prevent his anxiety.
Diane’s husband, Jeff (CBS): Diane cared for Jeff independently for 1.5 years. He initiated the need for caregivers for socialization. Due to rapid decline, frequent night awakenings, and behavioral issues, Jeff required 24/7 care within four months. Diane employs CNAs (Certified Nursing Assistants) – one private and two through an agency – piecing together care. She found it challenging to find aides skilled in both movement disabilities and behavioral/cognitive issues. Her private caregiver was a referral from a family friend, and while Diane considered legal oversight for private hiring, it wasn’t necessary in her case.
Ellen’s mother, Nancy (PSP): Ellen found a CNA through her church. She relied on recommendations. Her mother initially resisted help, but acceptance came after a fall necessitated more intensive care.
Financial Burdens of Caregiving
Doug (PSP): Highlighted the significant financial cost of self-care and getting out. This influences daily decisions, such as taking even simple outings, like dinner with friends more expensive.
End-of-Life Discussions and Choices
Diane’s husband, Jeff (CBS and Alzheimer’s): Jeff, initially optimistic, began discussing ending his life after losing the ability to walk. Diane expressed regret that they hadn’t discussed end-of-life wishes or “Death with Dignity” before the crisis. Their request for “Death with Dignity” through hospice was denied due to Jeff’s advanced Alzheimer’s impacting his capacity. They are now focusing on his comfort. Diane urged attendees to have these conversations early and be informed.
Clinical Trial Experiences
David’s wife, Camilla (CBS): Camilla participates in two clinical trials (UCSF, Stanford), which she sees as a way to contribute to understanding the disease. However, David described the experience as “mixed,” noting that in studies, participants are “data” rather than individuals, leading to a lack of warmth. A doctor’s comment questioning her diagnosis was “extremely unsettling” for Camilla, challenging her established reality.
Doug’s wife, Diane (PSP): Diane participated in an observational trial (which was unfortunately discontinued) and was Patient #1 in an unsuccessful clinical trial. Doug noted the ongoing emergence of new trials.
Impact on Family Relationships
Ellen (PSP): Faced “sandwich generation” challenges, balancing her mother’s care with her husband and their son returning from college. She found external support groups invaluable. Ultimately, caregiving deepened her relationship with her husband and son, who learned greater compassion.
Hospice and Palliative Care
Joan’s husband, Will (MSA): Joan used palliative care, which helped her navigate issues with her home health agency. Her husband qualified for hospice, but she initially delayed to allow him one more attempt at OT/PT. Once started, hospice was “wonderful,” providing 7-day-a-week nurse care for bedsores and 24/7 in-home nursing during his final 11 days (covered by Medicare). Joan highly recommends hospice.
Managing Anticipatory Grief
Panelists shared personal strategies for coping with anticipatory grief:
Kaly: Allows herself to cry and acknowledges her feelings rather than suppressing them. She also discussed “bucket list” items with her brother to ensure his wishes are met, which brings her comfort.
Ellen: Had a conversation with her mother about what Ellen would do after her mother died. This direct communication, even through her mother’s speech struggles, allowed Ellen to “exercise [her] grief with her real time,” leading to a sense of completeness.
Doug: Spoke about the importance of understanding that personality changes (yelling, screaming) in progressive diseases are often due to the condition, not personal attacks. Learning not to take things personally is crucial but takes years.
David: Described the “beautiful component” of connecting with a loved one through simple acts like looking in their eyes and holding their hands, which brings acceptance and spiritual growth during the grieving process.
Kaly: Reiterated that hurtful comments from her brother are the disease speaking, not him, a crucial distinction reminded by her family.
Therapists and Medications for Caregivers
One panelist found individual therapy combined with an antidepressant “extremely helpful” and essential for coping.
Medicare Coverage for Equipment
Medicare does pay for Durable Medical Equipment (DME) like wheelchairs and walkers, even outside of hospice, though co-pays usually apply. Panelists confirmed that specialists are helpful in authorizing needed equipment, noting Medicare covered much of Kevin’s Hoyer lift.
Silver Linings of Caregiving
Despite the profound challenges, panelists shared unexpected benefits.
Diane: Her relationship with her husband became closer than ever before through the shared experience and difficult conversations.
Ellen: Developed immense resilience and “stress hardiness,” feeling she can now confront any difficulty, knowing she has faced worse.
Kaly: Found deep value in support groups, connecting with others who truly understand and empathize. These groups provide a safe space to vent and make lasting friendships, essential for navigating the caregiving journey.
Joan: Expressed gratitude for meeting people through this journey whom she “would not have met otherwise.”