Recordings of Caregiver Book Authors and Advice

Stanford hosted a caregiver-focused webinar on Wednesday, March 5, 2025, 2:30-4pm, with former Parkinson's caregiver and author of "Love, Dignity & Parkinson's," Terri Pease, PhD. 

Terri was a caregiver for her husband, who had PD.  Over time, she learned that Parkinson’s introduces two entities into relationships—a “thief” that STEALS vital aspects of life like Sleep, Thinking, Elimination, Affection, Learning, and Sex, and a “liar” that distorts reality and breaks down trust. These challenges make caregiving difficult, but with the right approach, it is possible to stay connected in the relationship. 

Terri said that the key to preserving their relationship bond was in exchanging permission and trust. Her husband had to give her permission to care for him, and she had to trust that he was doing the best he could, even when his actions didn’t make sense. By understanding that the Parkinson’s was responsible for her husband's actions, she could respond with compassion.

In her husband’s final years at a memory care facility, they continued to openly communicate. She shares her story to help others in similar situations realize that, while Parkinson’s is a difficult road, it doesn’t have to destroy relationships. With trust, communication, and care, even the most challenging moments can still be filled with warmth, comfort, and connection.

View Meeting Recording

Stanford hosted a caregiver-focused webinar on Wednesday, February 5, 2025, 2:30-4pm, with former Parkinson's caregiver, Lianna Marie (liannamarie.com). Lianna is a trained nurse, founder of AllAboutParkinsons.com, and author of “Everything You Need to Know about Caregiving for Parkinson’s Disease” and “The Complete Guide for People with Parkinsons’ Disease and Their Loved Ones.”

Lianna and her mother wrote the first book together after talking over all the things they had learned by trial and error over fifteen years of living with PD.  Her mother said, “I wish I had known all these things 15 years ago, when I was diagnosed,” and the idea for a book was born. 

Lianna is working on her fourth book “The Parkinson’s Path, Finding Your Way on the Emotional Journey of Parkinson’s Disease.” (publication TBD)

View Meeting Recording

Stanford hosted a caregiver-focused webinar on Tuesday, December 10, 2024, 2:30-4pm, with former Parkinson's caregiver and author of "Slow Loss: a Memoir of a Marriage Undone by Disease," Lois Kelly.

Lois started things off by reading a couple of passages from her book about caring for her husband as he morphed into a stranger due to the physical and cognitive changes of Parkinson's dementia. Lois's prose is warm and sometimes funny.

In 2010 Lois wrote "Be the Noodle," which chronicles the three months Lois cared for her mother with cancer. Lois thought she had a handle on caregiving but learned that is nothing compared with 16 years of caring for her husband with Parkinson's dementia and psychosis.

There are stages of Parkinson's. Lois also experienced stages of caregiving:

• Acceptance - "We've got this!"
• Anxiety - "What comes next?"
• Despair / Anger - "I am losing my mind, too!" 
• Exhaustion / Relief / PTSD - "We made it!"

Lois's husband had hallucinations, paranoia, obsessive behaviors and more cognitive issues. He regularly dismissed her feelings and made excuses for his bad behavior. Prior to neurology appointments he would take an extra carbidopa-levodopa so doctors thought he was doing really well. People who didn't live with him also thought that he was doing really well. That was when she felt great despair and began to doubt herself.

Lois shared some things that made her feel better.

• They lived on a pond. Lois would stop to look out at nature for just 5-10 minutes to relax and get grounded in nature.
• Sometimes, you just need a 'screaming song.' For Lois that song was Gloria Gaynor's I Will Survive. She put it on in the house or car and screamed the lyrics.
• Find a song that fills your soul and makes you feel heard.
• Practice mindfulness meditation / recite a loving kindness prayer.
• Find meaning in poetry and other writings to remind yourself who you've always been
• The book "Unwinding Anxiety," by Dr. Judson Brewer has exercises to manage anxiety. From this book Lois learned that sometimes a single word can snap you out of a downward emotional spiral. 
• Connect with a support group and close friends who will listen but not offer advice. When you need help, ask your friends and be specific.
• Take advantage of Parkinson's education: webinars, workshops, etc. Lois learned what her innate strengths are at a PD workshop and leaned on them during trying times
• Be prepared to stop addressing every health issue when constant medical appointments, tests, and treatments impacts quality of life.
• Make peace with living in liminality, or an in between state. Accepting that we don't know what the future will be and being okay with that.

View "Slow Loss: a Memoir of a Marriage Undone by Disease" Webinar Recording

Stanford hosted a caregiver-focused webinar on Wednesday, September 26, 2025, 2:30-4pm, with former Parkinson's caregiver and author of "Advice from a Parkinson's Wife: 20 Lessons Learned the Hard Way" (2019)

Barbara explained how anosognosia, a common symptom of Parkinson’s where individuals lack awareness of their own limitations, creates unique challenges for caregivers. For example, a person with anosognosia are unable to understand that they are likely to fall, that they fall, or that they fall often. As such, they are not going to take any steps to prevent falls. In this situation caregivers are perceived as offering assistance when none is needed.

Barbara did not know and was not told prior to her husband having a psychotic episode that such behaviors could occur in people with PD. She wants to spread awareness that psychosis can be part of the disease process. The person with Parkinson’s sometimes cannot control their behaviors or what they perceive any more than they can control their bodies.

Barbara offers practical advice for caregivers, such as seeking support, prioritizing self-care, not feeling guilt, and advocating for their loved ones. She encourages caregivers to be patient, understanding, and focus on maintaining connection with the person they are caring for.

Finally, Barbara wants caregivers to know they are not alone. Her book and others, support groups, and other resources help make the journey easier. Even after their loved one's passing, there is support available to cope with the grief and loss, including her subsequent book, "Advice From a Parkinson's Widow: 20 Lessons I Never Wanted to Learn."

Read a review of "Advice From a Parkinson's Wife"

View Meeting Recording

Stanford and Brain Support Network co-hosted a webinar on Wednesday, March 30, 2-3:30pm. with journalist Dave Iverson.  Dave read some excerpts from his just-released memoir, "Winter Stars: An elderly mother, an aging son, and life’s final journey." Dave was diagnosed with Parkinson's in 2004 and was in the middle of making his first PD-related documentary when "he decided to do something he’d never imagined: he moved in with his 95-year-old mom Adelaide." His book is about his ten-year caregiving journey.)

Dave, with host Robin Riddle, discussed the choices, challenges, and life lessons of caregiving.  Dave says, "Being a caregiver means you experience anger and joy, loss and love, usually when exhausted and often on the same day."  But as he also writes, it’s a choice he’d make again.

Dave addressed his Parkinson's and how that affected his caregiving experience, sometimes in surprising ways. 

All royalties from the sale of Dave's book will be donated to Parkinson's or elder care organizations.

Stanford and Brain Support Network co-hosted a virtual meeting on Wednesday, February 23, 2-3:30pm. with local journalist Dave Iverson. Dave is the producer of two Parkinson's-related documentaries, "My Father, My Brother and Me" (2009), and "Capturing Grace" (2015). He was also the host for many years of Michael J. Fox Foundation educational webinars on PD. (Many of you may remember Dave from his work with KQED and PBS.)

Dave talked about his memoir, set to be released in March 2022, "Winter Stars: An elderly mother, an aging son, and life’s final journey." Dave was diagnosed with PD in 2004 and was in the middle of making his first PD-related documentary when "he decided to do something he’d never imagined: he moved in with his 95-year-old mom Adelaide." His book is about his ten-year caregiving journey.

Dave's talk focused on the challenges of caregiving, which is a story he believes isn't told often enough. "Being a caregiver means you experience anger and joy, loss and love, usually when exhausted and often on the same day. But as he also writes, it’s a choice he’d make again."

Dave talked about his Parkinson's and how that affected his caregiving experience, sometimes in surprising ways. But his story is primarily about the choices, challenges and life lessons caregivers encounter.

Here's advance praise for Dave's memoir from Michael J. Fox: “Winter Stars is a gift — a modern classic of frontier literature documenting the uncertain journey into the country of caregiving. That Dave walked this path while himself living with neurological illness is remarkable, but his story will resonate with everyone who has grappled up close with a parent or loved one’s end of life.”

All royalties from the sale of Dave's book will be donated to Parkinson's or caregiving organizations. A special offer is available to attendees of the February 23rd webinar, or those in the Stanford caregiver support group, or those in the Brain Support Network support group. Please contact the leader of your local support group about that. (If you don't know who that is, then you probably don't qualify for this special offer.)

Stanford hosted a caregiver-focused webinar on Wednesday, September 22, 2021, 2:30-4pm, with Santa Clara University clinical psychologist Dale Larson, PhD (dalelarsonphd.com). Our lives change dramatically when illness or disability strikes those we love most and we are suddenly cast in the role of caregiver. As Dr. Larson says: "Our worlds can be turned upside down, our most cherished beliefs and expectations challenged and transformed". Drawing upon some of the latest research, this webinar explored the challenges and rewards of the Parkinson's caregiver's journey, and look at how you can care for yourself while caring for those you love.

Dr. Larson drew upon his wonderful book titled "The Helper's Journey," which focuses on caregiving, especially for professional caregivers. He posits that there's a need to re-charge and to become resilient. To prepare for his presentation, Dr. Larson looked through research on PD caregiving, and shared his findings. Additionally, he has some personal experience with Parkinson's.

Some of the questions Dr. Larson answered included:

• what can I do to not feel like a failure as a caregiver?
• is it my responsibility to ensure my husband keeps going? To ensure he thinks highly of himself?
• Incontinence
• what can I do not to feel guilty about placing my wife in a care facility?
• my mother has a great life in that she does what she wants but why do I feel trapped in an exhausting life as a caregiver?

Meeting notes

This November 2025 virtual gathering brought together caregivers from the Stanford Parkinson’s Caregiver Support Program and Brain Support Network for a creative show-and-tell. Caregivers shared poems, photographs, paintings, quilts, music, and other personal projects that help them find moments of respite while supporting a loved one with Parkinson’s or an atypical parkinsonism disorder. Several caregivers presented their work, including a photo and caption book created by a couple, a quilt made from weekly hand-print blocks, and individual paintings and photographs. Moderators Robin Riddle and Denise Dagan guided the conversation as participants reflected on how creative expression supports their well-being.

View Meeting Recording

Stanford and Brain Support Network co-hosted a virtual caregiver workshop on Sunday, October 26, 3-4:30pm. Presenters Kelly Lewis Brezoczky, Parkinson’s caregiver and advocate, and Mary Kerr, Nurse Practitioner with the VA Home Based Care Program, led an interactive discussion on practical ways caregivers can “Take Five,” finding five minutes of calm, connection, or rejuvenation when the road gets rough.

Topics included:

• Understanding caregiver stress and “secondhand stress”
• Building emotional boundaries with the FABULOUS framework 
• Five approaches to “Take Five” self-care:
• Moving
• Music
• Working with words
• Breathing
• Mindfulness
• Sharing personal experiences and self-care ideas
   

View Meeting Recording

Stanford and Brain Support Network co-hosted a virtual meeting on Sunday, December 3, 2-3:30pm. Attendees were invited to share three things they learned while caregiving for family members with Parkinson's Disease, Lewy body dementia, progressive supranuclear palsy, multiple system atrophy, and corticobasal degeneration.

Here's a sample of what was shared:

• Explore caregiving alternatives before you need them
• Plan ahead for equipment you may need 
• Try a lending closet before you buy equipment
• Care facility placement can be a good experience
• You will make mistakes and have big feelings, like guilt and anger
• Join a support group!
• Be social
• Do not compare yourself with other caregivers
• Ask for help (be specific)
• Enroll with palliative care and hospice care early

Google document we compiled in advance of the meeting

Meeting notes

Stanford and Brain Support Network co-hosted a virtual meeting on Sunday, August 27, 2-3:30pm. Attendees were invited to share "gadgets" (equipment, tools) they find useful in caregiving for family members with Parkinson's Disease, Lewy body dementia, progressive supranuclear palsy, multiple system atrophy, and corticobasal degeneration.

Items shared fell into various categories, including:

• Mealtime
• Smartphone apps and Apple devices
• Safety
  
• Pressure sore prevention
• Mobility
• Clothing/Shoes
• Incontinence and Hygiene
• Medication management
  
• Writing Tools
• Low Vision/Dementia Tools

Google Spreadsheet we compiled in advance of the meeting
Meeting notes

Stanford and Brain Support Network co-hosted a virtual meeting on Sunday, June 27, 2-3:30pm. Attendees were invited to share "gadgets" (equipment, tools) they find useful in caregiving for family members with Parkinson's Disease, Lewy body dementia, progressive supranuclear palsy, multiple system atrophy, and corticobasal degeneration. Gadgets fell into various categories, including:

• Mobility
• Safety
• Incontinence
• Meal-time
• Medication management

Google Spreadsheet we compiled in advance of the meeting
Meeting Notes