The art of listening is central to every medical encounter.
When physicians invite patients to share their stories, they open the door to invaluable insights that can guide and inform care. Patients often know their bodies best, and by truly hearing their experiences, we learn not only what is troubling them but what truly matters to them. The result is a stronger patient-physician relationship — and ultimately, better outcomes for patients.
People with Dementia Can Still Live Purposefully
Laurie’s Dementia Journey Is One of Adaptation
Laurie Scherrer was diagnosed with Alzheimer’s disease (AD) in her early fifties. In sharing her journey, she emphasizes that dementia is not solely a condition affecting older people. She likens having AD to living on a roller coaster because she is faced with sudden changes in mood and memory, often daily. She offers personal anecdotes about her struggles with memory and confusion, and how she and her spouse (her primary caregiver) have learned to adapt. They have devised strategies to lessen episodes of confusion and to find joy in her daily life. She said peer support has helped her live a more fulfilling, active life, and she expressed a wish that doctors would provide more encouragement and resources from the very beginning of this diagnosis, so people with AD can approach their days positively and with purpose. She channels her positivity to inspire others in a blog, DementiaDaze.
She urges physicians to remember this affirmation:I don’t want just to survive – I want to thrive.
People with Dementia Deserve Compassion and Hope
Lori La Bey is a caregiver turned advocate for people with dementia Health
For more than 30 years, Lori La Bey became a sandwiched generation Alzheimer’s caregiver to her Mom, and then her ex-husband’s wife, learning how to navigate their care with little insight, professional guidance, or resources. She has channeled decades of caregiving experience into a dementia information platform, Alzheimer’s Speaks, applying lessons she learned into supportive resources. She also provides insights on agitation, a common symptom that is more easily managed when better understood. Lori is committed to changing how caregiving is perceived, received, and delivered by shifting the culture of dementia care from crisis to comfort. She strives to raise awareness of Alzheimer’s disease among physicians and health practitioners, advocates, and those interested in learning how to live a positive life with dementia.
Lori is a children’s book author, speaker, podcast host, and advocate for new delivery systems and attitudes toward those living and dealing with dementia. Podcasts on Alzheimer’s Speaks
Younger Women Can Have Osteoporosis Too
Susan Faschino Is a Retired Teacher and Proponent for Bone Health
Susan Faschino is a former elementary school teacher who struggled for years with undiagnosed osteoporosis that forced her to retire at age 47. She had debilitating back pain that sent her to the emergency room, where she learned that she had 7 compression fractures in her spine. Tests indicated an elevated serum calcium level, requiring parathyroid surgery; these two conditions led to a diagnosis of and treatment for osteoporosis.
Susan still requires ongoing physical therapy and treatment to manage her osteoporosis. She shares valuable insights with physicians about her journey, urging consideration of osteoporosis evaluation in women who experience early menopause and/or show signs suggestive of a secondary cause of osteoporosis.
A Trailblazer in Menopause Care
Karen Giblin — a trailblazer in women’s health — is President and Founder of Red Hot Mamas
Karen Giblin shares the challenges she faced with surgical menopause, and how she has found a way to help others. She also offers invaluable insights for practitioners so they may be better prepared to initiate conversations with their patients while providing empathy and effective care. It all started for Karen during her third term as Selectman; she needed a hysterectomy/oophorectomy. She didn’t know the questions to ask or what to expect as she struggled to work through the challenging side effects of premature menopause. As she learned the dramatic impact that menopause can have on individuals, she founded Red Hot Mamas North America, Inc., a leading provider of menopause education and support. She is dedicated to providing the needed information and resources so individuals can manage their symptoms and get care for increased risks of conditions such as heart disease and osteoporosis. Karen has authored two books on menopause and was co-author of a study on patient-reported outcomes.
In Search of Care for Obesity
Liz Paul, Patient Advocate and Board Member for the Obesity Action Coalition
Liz Paul has lived in a larger body her whole life. Despite being an active child, and eating the same things as the rest of her family, she was the one who struggled with her weight. Early on she was ridiculed and told that her size was her problem to fix. She went to Weight Watchers for the first time in 6th grade, at the urging of her mother. This began a lifelong pattern of dieting, losing weight, regaining weight, negative self-image and internalized weight bias.
As an adult she’s lost over 100 lbs more than once, after the birth of each of her children, but despite her hard work, she has struggled to maintain her weight loss and has regained her weight and then some. In 2017, at age 37, she was introduced to the Obesity Action Coalition and her mindset and advocacy work began.a
Facing Endometriosis So Young
Stephanie Moss, MD, is a first-year resident in psychiatry at Rosalind Franklin University.
As a Latina, non-traditional, first-generation physician, Dr. Stephanie Moss has overcome many academic challenges, taking a leave of absence from medical school and living with invisible chronic health conditions and disabilities. She shares her story of having to manage pain and face other challenges that arose from what was finally diagnosed as endometriosis. Through her lifelong dedication to diversity, health equity, and inclusion, she strives to be a voice for marginalized communities.
Seeking Sleep: Don’t Give Up
Kathy Page advocated for herself and then got connected to a sleep apnea group that evolved into the Alliance of Sleep Apnea Partners to help others who are seeking information and affirmation about how to get taken seriously to have her sleep issues addressed.
Kathy Page struggled to get the attention she needed from her healthcare practitioners—a challenge made even greater by her rural location and limited access to sleep specialists. She had to persistently advocate for herself before her doctors truly listened. Looking back, she wonders if some of her medical issues might have been less severe had her sleep disorder been diagnosed earlier. Now, using a CPAP machine, she and her husband both rest more easily, as it’s far less disruptive than the frequent awakenings and snoring. Kathy has learned the importance of speaking up about her sleep concerns so that she can achieve better rest and, ultimately, better health. She encourages others to remember that they are not alone—many share similar experiences—and that finding a support group can make a meaningful difference.
Personal Journey of a Family Caregiver
Susie Singer Carter advocated for her mother’s care as she declined into dementia and spent her final years in a nursing home. Susie shares her compelling experience and insights regarding the role and challenges facing a family caregiver of someone with Alzheimer’s disease.
Susie Singer Carter is a multi-award-winning filmmaker, writer, director, producer, actor, podcast producer, host, and Alzheimer’s caregiver advocate. best known for her 2018 Oscar qualified short film, My Mom and The Girl with Valerie Harper starring in her final performance. She is a sought-after speaker and has appeared in several awareness campaigns for Alzheimer’s Los Angeles. Susie proudly emceed the 2022 San Fernando Valley Alzheimer’s Walk holding up a purple flower for her mother who passed away in July. She is currently producing an important documentary, No Country For Old People, to pull the curtain back on nursing home neglect and abuse and who is responsible for it. The film’s fiscal sponsor is The National Consumer of Voice Quality Long-Term Care. Watch the trailer.
Seeking a Physician Willing to Help Her Sleep Again
Monica Le Baron, MBA. Monica suffered from depression, insomnia, and anxiety from a young age. She has sought medical guidance to address her sleep challenges at several key points during her life.
Monica Le Baron shared her journey in search of a physician willing to listen and help her to sleep again. She wants physicians to appreciate the perspective of someone who has struggled to achieve consistent sound sleep. She is a certified yoga therapist who specializes in helping women with sleep disorders get a good night’s rest based on her years of personal experience. Her passion and practice are informed by her own journey from corporate burnout to developing effective restorative practices in conjunction with effective medical care.
Believing Me When I Say I Struggle with Fibroids
African American women are three times more likely to develop symptomatic fibroids than women of other ethnic groups, and typically do so at an earlier age. Tanika Gray Valbrun, an award-winning journalist, patient advocate, and founder of The White Dress Project, shares her personal struggles with uterine fibroids.
Tanika Gray Valbrun is the founder and chief patient advocate of The White Dress Project for uterine fibroid awareness. She is also a woman who has managed life with symptomatic fibroids since the age of 15.
Tanika advocates for the importance of funding and research for women’s reproductive health concerns and speaking out about medical bias, health disparities, social bias, and racial inequities. Everyone has implicit biases, and for physicians, these biases can influence clinical decisions and patient care. She believes that when patients are encouraged to share their stories — and when they are believed — they can become a valuable source of information, helping in the diagnosis, treatment, and full understanding of the condition.
“May each patient story you hear serve as an opportunity to think introspectively and offer a new glimpse into the diverse patient perspective.”
A Patient Journey of Persistence with Thyroid Eye Disease
LaQuilla Harris developed Graves Disease, and thyroid eye disease, leaving Mrs. Harris blind for more than 7 years, and then she became hypothyroid and developed multiple other autoimmune disorders including type 1 diabetes and myasthenia gravis. By her own strength and perseverance, she is here to tell her story.
LaQuilla Harris suffers from long misdiagnosed and complicated thyroid eye disease that has left her struggling with double-vision to this day. Physicians may have knowledge of thyroid disease but too few know what it is to struggle with an endless list of disease symptoms and complications beyond textbook descriptions.
In 2006, I was diagnosed with Grave’s disease and Myasthenia Gravis. By the time I was finally diagnosed, I had developed significant exophthalmos (proptosis in both eyes) and a thickening of my eyelids that made it nearly impossible for me to even open my eyes. I couldn’t accept living like this so I persevered until I found my way to a doctor who said he could help me manage my symptoms…
Dealing with a Lifetime of Chronic Pain
Katie M. Golden is a chronic patient advocate, writer, and community moderator for Migraine.com. She shares a lifelong struggle with multiple pain conditions, and presents her personal case study to challenge you to be a good listener.
Katie Golden believes that patients suffering from chronic pain often know as much as or even more about their condition than their physician. “I, for one, researched extensively into my symptoms to learn what to expect, what my options for care were, what would give me the best chance for pain relief.”
I suffer from chronic intractable migraine, also known as status migrainous, as well as occipital neuralgia. My headache pain grew so constant that I had to leave a job I loved. I couldn’t function, and I couldn’t predict how I would feel from one day to the next. When I sought help from a headache specialist who was unable to find an adequate treatment plan for me, I was referred to another headache clinic. There, I was placed on a five-day inpatient IV ketamine infusion that is done annually, as well as receiving routine headache medications and a nasal spray to take as needed. I have benefitted significantly from this treatment plan, experiencing an overall reduction in the severity and frequency of my headache attacks.
Educating Latinas About Preventing and Managing Osteoporosis
Alejandra Arriaran is a peer educator for American Bone Health, working with women to inform them about osteoporosis and how they can manage this condition. She has a special interest in providing resources, support, and education to Hispanic women and Latinas who are often the heart of their households and their communities.
Alejandra Arriaran is a Columbian-born Californian who works as a translator and patient educator for Latinas on behalf of American Bone Health. She shares the struggles faced by this complex and diverse population who experiences a high prevalence of lactose intolerance, lower intake of dietary calcium, higher rates of bone fractures, and greater risk of developing diabetes, all of which may increase the risk for osteoporosis.
I was fascinated when meeting Hispanic women from different parts of the world because the culture, language, and health considerations differed even from my own. I learned so much from these women. I see them as survivors; they come to this country and take on strenuous manual labor. They are passionate about what they do and want the best for their families. Yet access to basic healthcare is challenging and with little preventative care, they often present to the emergency room. Thus they rarely receive the resources and information needed to make better choices for themselves and their families
Acknowledgment: This program is supported by sponsorships from Amgen, Eisai, Novo Nordisk, and Pfizer. Content independently developed by AMWA.