PSP/CBD panel - Brain Support Network

Moderated by Astrid Fann
Co-Leader, Brain Support Network’s PSP/CBD Caregiver Group

Panelists (L to R): Astrid (moderator, former PSP caregiver), Camilla (with CBS), Robert (with PSP), Jenna (parent with PSP), Taylor (spouse with PSP), and Marnie (former PSP caregiver)

Editor’s Note: These are brief notes from Elizabeth Wong about what she learned from the Q&A. Following the summary are more detailed notes, in case you are interested in reading further!

Panelists—Camilla (with CBS), Robert (with PSP), Jenna (caregiver, who has parent with PSP), Taylor (caregiver, who has spouse with PSP), and Marnie (former PSP caregiver)—offered personal insights into the realities of navigating life with PSP and CBD. The discussion touched on the importance of mental and emotional health, with panelists sharing their personal coping strategies, which included therapy, medication, support groups, and personal outlets like art, exercise, and humor. Topics also included the practical challenges of hiring and managing home caregivers, the decision-making process around moving a loved one to a care facility, and the single most helpful pieces of equipment that made a difference in their lives. The session provided a supportive look at the resilience and resourcefulness required to navigate these conditions.

PSP/CBD Symposium Panel

Moderator: Astrid Fann, Co-Leader, Brain Support Network’s PSP/CBD Caregiver Group
Presented during: PSP/CBD Symposium
Symposium Co-Hosts: Stanford Movement Disorder Center and Brain Support Network
Date: June 29, 2024
Summary by: Elizabeth Wong, Stanford Parkinson’s Community Outreach

The panel was moderated by Astrid, who shared her personal experience caring for her husband with PSP, who passed away six months prior after a PSP diagnosis confirmed by brain donation.

A panel of two active caregivers, one former PSP caregiver, a person with CBS, and a person with PSP offered personal insights into the realities of navigating life with PSP and CBD:

Camilla: Living with CBS diagnosis.
Robert: Living with PSP diagnosis.
Jenna: Co-caregiver with her sister for their mother, Sally Ann, who has PSP.
Taylor: Actively cares for his wife with PSP.
Marnie: Cared for her mother, who had confirmed PSP via brain donation and passed away after a 10-year journey with the illness.

First Symptoms and Diagnosis

Panelists recounted the often challenging paths to diagnosis:

Jenna’s mother, Sally Ann (PSP): Symptoms began around 2018 with falls, which were communicated to her primary care physician. After being estranged for a time, Jenna and her sister reconnected with their mother in 2022. She was initially misdiagnosed with dementia before receiving a PSP diagnosis in November 2022. Sally Ann retired from her tax preparation business, moved into assisted living, and has since progressed from a cane to a walker and now a wheelchair.
Taylor’s wife (PSP): Symptoms began five to six years ago (2018?). Her walking became increasingly difficult, and she now uses a walker. She was an active participant in Rock Steady Boxing but is now too weak to continue and increasingly wishes to remain in bed. They have been married for 45 years and have a 31 year old son.
Marnie’s mother (PSP/CBS): Her first symptom at age 75 was slow speech, which was followed by motor symptoms. Her symptoms were asymmetric (worse on her right side), suggesting a PSP/CBS overlap. Her journey from first symptoms to passing was about 10 years. The diagnosis of PSP was confirmed via brain donation.
Astrid’s husband (PSP): His journey began with an essential tremor diagnosis, which later changed to Parkinson’s, and finally to PSP, which was also confirmed via brain donation. He passed away six months ago at home after he had been diagnosed with PSP 3.5 years prior.

Coping Strategies for Mental and Emotional Health

A major focus of the panel was on maintaining mental and emotional well-being for both the person with the diagnosis and the caregiver.

Astrid (moderator, former caregiver): Continues to be part of several support groups and sees psychiatrist.
Camilla (person with CBS diagnosis): Found it difficult to find a therapist willing to take on their “complex medical situation” but was eventually referred to Orange County Health Psychologists by Stanford. She meets weekly with a therapist. Her primary focus is on joy, which she cultivates through a new passion for art, a group meditation practice, swimming, and having fresh flowers delivered weekly. She draws the flowers.
Robert (person with PSP diagnosis): Sees a psychiatrist weekly. He has medicare. He also prioritizes exercise, walking, and playing golf to the extent he is able.
Jenna (caregiver): Her mother enjoys activities in her assisted living facility, including art, flower arranging, karaoke where she can project her voice, and bingo. Her mother is on antidepressant and anti-anxiety medication and has issues with compulsivity and impulsivity. Her mother enjoys time with her grandchildren and daughters. For her own coping, Jenna has been in counseling (especially to deal with the family’s prior estrangement), relies heavily on her sister for support, and works out with a personal trainer twice a week.
Taylor (caregiver): He notes that his wife is not inclined toward counseling and tends to deal with things as they come. For himself, his stress is overcome by the daily details of caregiving. He has his own counselor. His personal coping formula is “pickleball, Zoloft, and a beer at 5:00.”
Marnie (caregiver): Shared that her mother was “blessed with apathy” and did not experience depression or anxiety. For her own well-being, Marnie prioritized getting help, hiring caregivers early on using her mother’s resources to pay caregivers directly. For herself, she found that working with a personal trainer twice a week was very helpful. Her sister who lived out of state would come for a long weekend every few months so Marnie and her husband could get away for a short weekend respite.

Home Help and Caregiver Management

Taylor: Now has two caregivers and emphasized the significant energy required to get their services and manage them, including creating a detailed daily schedule sheet that outlines every hour of the day.
Marnie: Started with agency caregivers but quickly moved to hiring privately to save money and ensure continuity of care, as training new agency staff became exhausting as her mother’s needs grew more complex. She found the first three caregivers through Craigslist, interviewed them, and gave them a trial run. The last caregiver she got through referral from one of the other caregivers. She used a payroll program (like “Simple Nanny Tax” or similar) to handle payroll and taxes herself. She gradually increased care hours to 20 hours per day before her mother moved to a facility.

The Decision to Move or Modify the Home

Camilla: Initially planned to build a downstairs bedroom and bathroom but realized it wouldn’t accommodate a caregiver comfortably. Fearing the loss of her social life after quitting work, she and her husband made the proactive decision to move into a senior living community with stepped care, even though her neurologist felt it was “way too soon.” She feels it was the best decision, allowing her to build a new community.
Robert: In the process of selling the house and moving elsewhere. He plans to be home away from home.
Jenna: Her mother’s decision to move to assisted living was driven by frequent falls in her home, which had a step she could no longer navigate safely due to PSP-related difficulty looking down. The move also brought her closer to her daughters. It was important for her mother to bring her sentimental furniture and antique items.
Taylor: Modified his home by moving the bedroom downstairs into a smaller room to avoid the second story. He and his wife have no plans to move from their home.
Marnie: Moved her mother to a memory care facility after 3.5 years at home. The decision was based on several factors: the psychological barrier of needing a Hoyer lift at home, increasing absenteeism by caregivers during COVID, her husband’s need for privacy and attention, and the immense financial cost of 20-hour-a-day in-home care.

Most Helpful Piece of Equipment

Astrid: SARA Stedy to use for transport from powerchair to toilet chair to bed, etc, he could stand but he could not walk. Facebook marketplace is a great place to find equipment.
Camilla: Walking sticks, gloves to wear with the sticks, and her husband’s arm.
Bob: Porsche aka walker and was very fast.
Jenna: The U-Step walker was the best option for her mother before she progressed to a wheelchair because its braking system and adjustable speed settings provided better stability and balance control than regular walkers.
Taylor: A rollator that doubles as a transport chair, which is very useful for doctor’s appointments.
Marnie: A high low hospital bed that went all the way to the floor (found for free on Craigslist and just had to pay for transport) to prevent injury from falls out of bed, and a tilt-in-space wheelchair (bought used on Craigslist) where her mother could be comfortably positioned all day.

One Piece of Sage Advice

Camilla: “Pick up a brush or a pencil.” Find a new, creative activity like art.
Robert: Exercise. He is competitive and he found a competitive caregiver who motivated him to move.
Jenna: Exercise, laughter and joy. Find humor wherever you can to get through the trying days.
Taylor: Humor and get out of the house. For a caregiver, doing something physical outside the home every day is a “real tonic.”
Marnie: Learn to compromise, because you will always be compromising with facilities, caregivers, and the disease itself.