SRNA Soundwaves

Krissy Dilger of SRNA moderated this "Ask the Expert" episode, “Pelvic Floor Therapy for Bladder and Bowel Management,” featuring Jessica Ekberg, a certified pelvic floor therapist. Jessica explained the various conditions treated by pelvic floor therapy, emphasizing the importance of posture and breathing [00:01:05]. She discussed how pelvic floor therapy is adapted for individuals with rare neuroimmune disorders [00:04:59]. The discussion included both physical exercises and emotional work integral to the therapy [00:07:42]. Practical tips for seeking pelvic floor therapy and insurance considerations were also covered [00:10:42]. The episode concluded with encouragement to explore this underutilized service [00:19:23].

00:00 Introduction

02:03 Understanding Pelvic Floor Therapy

04:59 Pelvic Floor Therapy for Rare Neuroimmune Disorders

07:42 The Emotional and Mental Aspects of Pelvic Floor Therapy

10:42 Practical Insights and Patient Experiences

19:23 Getting Started with Pelvic Floor Therapy

27:38 Conclusion

Jessica Ekberg, OTR/L is a business owner, avid runner, former pants peer, prolapse owner, postpartum pain sufferer, mom of two, and certified pelvic floor therapist. Jessica is extremely passionate about helping men and women be the best version of themselves they can. Her goal is to bring Pelvic Floor Health discussions to the forefront of what she does, to help dispel myths and educate about facts. The lack of information and effective treatment in the community can leave people suffering in silence. Now that she has been working in pelvic health for almost five years, she realizes just how critical pelvic health is to all of us. She started her pelvic health journey after experiencing “a lot of problems” when returning to running post baby.

Jessica’s advice is to stop ignoring or putting off taking care of yourself. The core makes up the foundation of the body and if it is not functioning properly, it can impact several systems within the body. Some of the problems that clients present with are incontinence, hernias, pelvic pain including hips/back/genital/rectal/tailbone, respiratory difficulties, heavy/painful periods, menopause, endometriosis, pre/during/postpartum care, constipation, and sexual (including erectile) dysfunction. Jessica’s approach involves assessing the whole body, putting the puzzle together in order to determine the driver of the dysfunction and then developing a treatment plan to solve the problem. Her goal is to help clients return to doing all of the things they love, as quickly and safely as possible.

The "Community Meets Clinic" podcast series introduces clinicians and healthcare personnel specializing in rare neuroimmune disorders. In this episode hosted by Krissy Dilger of SRNA, we meet Dr. Michael Levy, a clinician from Massachusetts General Hospital. Dr. Levy is the Research Director of the Division of Neuroimmunology and Neuroinfectious Disease at Mass General and an Associate Professor at Harvard Medical School. He shared his journey into the field of neuroimmunology, discussed his research on the causes of MS, NMOSD, and MOGAD, and provided insights into the multidisciplinary clinic team at Mass General [01:27]. The episode also touched on the importance of understanding and reeducating the immune system to improve patient outcomes [15:22]. You can view the medical profile of Dr. Levy here:

https://doctors.massgeneralbrigham.org/provider/michael-levy/1090088

Michael Levy, MD, PhD is a recognized neurologist with over 15 years of clinical and research expertise in rare neuroimmunological disorders. He established the Neuroimmunology Clinic and Research Laboratory at Massachusetts General Hospital and is the Research Director in the Division of Neuroimmunology and Neuroinfectious Disease. Previously, Dr. Levy was on the faculty at Johns Hopkins University and was the founding Director of their Neuromyelitis Optica Clinic.

Clinically, Dr. Levy cares for patients with MOG antibody disease (MOGAD), neuromyelitis optica spectrum disorder (NMOSD), and idiopathic transverse myelitis (TM). Dr. Levy is also the principal investigator (PI) on numerous patient studies and drug trials for new and improved treatments for these disorders. In 2022, Dr. Levy became the lead principal investigator for the two worldwide clinical trials in MOG antibody disease.

In the lab, Dr. Levy’s research focuses on the development of animal models of NMO and MOG with the goal of tolerization as a sustainable long-term treatment. Dr. Levy has more than 200 peer-reviewed research articles, reviews and editorials, and 3 patents covering NMO tolerization therapy, TM diagnostics, and stem cell regeneration approaches.

00:00 Introduction
00:54 Meet Dr. Michael Levy
01:27 Dr. Levy's Journey into Neuroimmunology
04:50 Research Focus and Discoveries
08:54 Clinic Operations at Mass General
12:12 Self-Care and Professional Fulfillment
15:22 Future of Neuroimmunology
16:52 Closing Remarks

The "Community Meets Clinic" podcast series introduces clinicians and healthcare personnel specializing in rare neuroimmune disorders. In this episode, Krissy Dilger of SRNA was joined by Dr. Cristina Sadowsky from Kennedy Krieger Institute in Baltimore, Maryland. Dr. Sadowski shared her journey to become a physician and her focus on spinal cord injury rehabilitation [00:02:26]. She discussed the Kennedy Krieger Institute International Center for Spinal Cord Injury's comprehensive care approach, which includes long-term and specialized treatments for both pediatric and adult patients [00:07:00]. Dr. Sadowski concluded with insights on what keeps her motivated and her hopes for advancements in the treatment of rare neuroimmune disorders [00:13:51]. You can view the medical profile of Dr. Sadowsky here:

https://www.kennedykrieger.org/patient-care/faculty-staff/cristina-sadowsky

Born in Romania, Cristina Sadowsky, MD attended the Institute of Medicine and Pharmacy in Bucharest. She completed an internship and residency in internal medicine at Meridia Huron Hospital/Case Western Reserve University in Cleveland, OH. From there, she began a residency in physical medicine and rehabilitation at Barnes-Jewish Hospital/Washington University School of Medicine in St. Louis, MO. Immediately following the completion of her second residency, she began a fellowship in spinal cord injury medicine at Barnes-Jewish Hospital/Washington University School of Medicine. At the same time, she became a clinical instructor in the school’s Department of Neurology and later assumed an assistant professor in neurology in the Division of Rehabilitation, Spinal Cord Injury Unit. In October 2004, she moved to Baltimore, joining the Kennedy Krieger Institute as Director of the Paralysis Restoration Clinic in the International Center for Spinal Cord Injury. In March 2005, she became an assistant professor of physical medicine and rehabilitation at Johns Hopkins School of Medicine.

She frequently serves as an invited clinical scientific peer reviewer for the American Journal of Physical Medicine and Rehabilitation, Archives of Physical Medicine and Rehabilitation, Journal of Rehabilitation Research and Development, the Journal of Spinal Cord Medicine, Translational Research. She also serves as a section editor for Physical Medicine and Rehabilitation Reports.

00:00 Introduction
00:52 Meet Dr. Christina Sadowski
01:35 Dr. Sadowski's Journey to Medicine
02:41 Focus on Chronic Spinal Cord Injury Care
05:49 Research and Innovations in Spinal Cord Injury
07:32 Overview of the Kennedy Krieger Institute
14:38 Personal Insights and Self-Care
17:09 Advice for Patients and Families
20:49 Hopes for the Future of Neuroimmune Disorders
22:49 Conclusion and Acknowledgements

In this episode of "Ask the Expert," Dr. Eoin Flanagan joined Dr. GG deFiebre of SRNA. Dr. Flanagan explained how immunosuppressive medications impact the immune system and the efficacy of vaccines [00:02:45]. He discussed the primary concerns and risks of vaccinating individuals on these therapies, including avoiding live vaccines and the need for additional booster doses [00:04:52]. Dr. Flanagan also talked about the recommended vaccines for those with conditions like NMOSD or MOGAD, and underlined the importance of getting vaccinated to prevent severe infections [00:09:40]. He addressed common misconceptions and emphasized the role of healthcare providers in educating and supporting their patients regarding vaccinations [00:15:32].

Eoin Flanagan, MB, BCh is a Professor of Neurology and Consultant in the departments of Neurology and Laboratory Medicine and Pathology at the Mayo Clinic (Rochester, MN). He completed his medical school training at University College Dublin in Ireland in 2005. He did a medical residency in Ireland and then completed neurology residency, fellowships in neuroimmunology and a masters in clinical and translational science at Mayo Clinic (Rochester, MN). He works in the Autoimmune Neurology and Multiple Sclerosis Clinics and the Neuroimmunology Laboratory at the Mayo Clinic. His clinical expertise and research are focused on inflammatory myelopathies and their imaging patterns, myelin oligodendrocyte glycoprotein (MOG) antibody associated disorder, neuromyelitis optica spectrum disorders, autoimmune encephalitis, paraneoplastic neurologic disorders, and multiple sclerosis. He is principal investigator on an NIH RO1 grant studying MOG antibody associated disorder.

00:00 Introduction

00:47 Understanding Immunosuppressants and Vaccines

01:28 Primary Concerns with Vaccinating Immunosuppressed Patients

02:30 Recommended Vaccines for Immunosuppressed Patients

07:11 Timing and Effectiveness of Vaccinations

08:21 Measuring Vaccine Response

09:24 Addressing Missed Doses and Safety Considerations

16:41 Public Health Implications and Patient Advocacy

17:56 Advice for Vaccine-Hesitant Patients

19:06 Healthcare Providers' Role in Vaccination

20:03 Conclusion and Final Thoughts

In the "ABCs of NMOSD" episode, Landy Thomas of SRNA was joined by Heather Dawn Sowalla and Dr. Meghan Beier to discuss post-diagnosis body dysmorphia in NMOSD patients [00:00:12]. Heather shared her misdiagnosis journey, the impact of steroids, and her coping mechanisms [00:06:24]. Dr. Beier highlighted the importance of finding a supportive community and suggested strategies for managing new identities and body perception [00:08:02]. Both emphasized the significance of connecting with others and seeking professional help to navigate these challenges [00:11:25].

Heather Sowalla has lived most of her life in Pennsylvania. After earning her bachelor's degree in Environmental Science and her master's degree in Environmental Studies, she returned home to her family's dairy farm where she utilized her degree focusing on sustainable agriculture. Heather also spent two summer seasons working in Alaska with the Fish and Wildlife Department focusing on sustainable fisheries. Heather first became symptomatic for NMOSD around 2004 and has since lost a good deal of her vision, but she is doing well otherwise. Heather is newly engaged to Doug, a fellow NMOSD patient, and they plan on creating a life together in Vintondale, Pennsylvania.

Meghan Beier, PhD is on faculty at Johns Hopkins and is a Health and Rehabilitation Psychologist specializing in multiple sclerosis at the Rowan Center for Behavioral Medicine. Dr. Beier completed her PhD in Clinical Psychology, Health Emphasis, from Yeshiva University then completed a postdoctoral fellowship, funded by the National MS Society, at the University of Washington where she focused on the rehabilitation, cognition, and mental health of individuals living with MS.Dr. Beier has been featured in well-known publications such as the New York Times, People Magazine, and Psychology Today. She is an internationally invited keynote speaker and also an active consultant and speaker for organizations such as National MS Society, Can Do Multiple Sclerosis, and more. Dr. Beier’s research interests include neuropsychological outcomes for individuals living with MS; cognitive rehabilitation; and behavioral approaches to wellness. She continues to remain active in research as an adjunct faculty member of Johns Hopkins University School of Medicine.Dr. Beier’s passion for improving care for people living with challenging medical conditions led her to create Find Empathy, which provides a free directory of mental health providers that specialize in working with medical populations. Find Empathy also provides continuing education for mental health professionals focused on how best to serve those living with or affected by life altering illnesses.

https://www.nationalmssociety.org/https://cando-ms.org/https://scholar.google.com/citations?user=KUPu4O4AAAAJ&hl=en

https://findempathy.com/https://findempathy.com/learn/

00:00 Introduction
01:10 Meet the Guests: Heather Sawala and Dr. Megan Beier
03:26 Heather's Diagnosis Journey
05:04 Dr. Beier's Work and Find Empathy
08:02 Discussion on Post-Diagnosis Body Dysmorphia
11:25 Coping Strategies and Personal Experiences
24:57 Advice for Newly Diagnosed Patients
33:18 Final Thoughts and Resources

In this "Ask the Expert" episode, Dr. GG deFiebre of SRNA was joined by Dr. Rebecca Martin, who detailed the mechanism and benefits of transcutaneous spinal cord stimulation (TSS). Dr. Martin explained how TSS, a non-invasive method, aims to amplify spinal cord excitability and improve neurological functions like movement and sensation [00:01:25]. She contrasted TSS with implanted spinal stimulators, noting their respective applications and advantages [00:02:34]. Dr. Martin shared the promising outcomes of TSS in clinical trials, emphasizing its potential for widespread clinical use, and she urged patients to inquire about it at their clinics [00:05:42]. You can read her group's recent paper here:

"Transcutaneous Spinal Cord Stimulation Enables Recovery of Walking in Children with Acute Flaccid Myelitis"

https://www.mdpi.com/2227-9067/11/9/1116

Rebecca Martin, OTR/L, OTD, CPAM received her Bachelor of Science in Occupational Therapy from Boston University in 2001 and her Occupational Therapy Doctorate from Rocky Mountain University of Allied Health Professions in 2008. Prior to joining the Kennedy Krieger Institute, Dr. Martin worked in brain injury rehabilitation in Boston, Massachusetts.

Dr. Martin joined Kennedy Krieger in 2005 as a Senior Occupational Therapist in the International Center for Spinal Cord Injury. Since 2010, Dr. Martin has been the Manager of Clinical Education and Training at ICSCI and is responsible for program development, staff training, and oversight of the clinical research program. Dr. Martin speaks nationally on topics related to Activity-Based Rehabilitation; she has taught many continuing education courses for rehabilitation professionals in the areas of neurological pathology, rehabilitation, and research. She has been the principal investigator and co-investigator for grants from the Paralyzed Veterans of America Education Foundation and Department of Defense to develop, promote, and disseminate an activity-based restorative therapy training program and curriculum.

In 2011, Dr. Martin was awarded the Leader in Spinal Cord Injury Care by the International Center for Spinal Cord Injury at Kennedy Krieger. From 2011-2016, Dr. Martin served as a Committee Chair for the annual Contemporary Trends in Spinal Cord Injury Management Symposium at Kennedy Krieger. As a consultant for SwissStim, she has helped create clinical use guidelines for training and documentation. In 2015, Dr. Martin was invited to serve on the NIH and NINDS Committee to establish Pediatric Spinal Cord Injury Common Data Elements.

In this "Ask the Expert" episode titled, "Women's Health within Neuroimmunology," Dr. Sonia Singh joined Krissy Dilger of SRNA to share women's health concerns within the context of neuroimmunology, focusing on issues like fertility and pregnancy for those with rare neuroimmune disorders [00:01:20]. Dr. Singh discussed how certain conditions, such as neuromyelitis optica spectrum disorder (NMOSD) and autoimmune encephalitis, and medications could impact fertility [00:03:45]. They also explored the increased risks of relapse during and after pregnancy and the importance of coordinated care between neurologists and obstetricians [00:07:10]. Dr. Singh emphasized the importance of teamwork during pregnancy to ensure optimal outcomes for both mother and child [00:21:45].

Sonia Kaur Singh, MD is a Neurologist and Assistant Professor of Neurology at Medical University of South Carolina (MUSC), Charleston who specializes in Neuroimmunology. Dr. Singh obtained her medical degree from Kasturba Medical College, Mangalore in Southern India. After graduation, she worked with dementia specialists in India studying dementia in culturally and linguistically diverse populations. She completed her neurology residency at University of Texas Health Science Center Houston (UTHealth Houston) in the Texas Medical Center. During residency, she was involved with innovative learning strategies including a structural competency curriculum and graduated with the prestigious Frank Yatsu Award for Excellence in Clinical Neurology. After residency, she completed a one-year fellowship in Multiple Sclerosis and Neuroimmunology from UTHealth Houston where she was actively involved in medical education and clinical trials. Dr. Singh has a special interest in women’s health and cognition in neuroimmune conditions.

In this "Ask the Expert" episode titled, "Self Identity and Finding Meaning Following Diagnosis," Krissy Dilger of SRNA spoke with Susan Y. Wegener, LCSW, a licensed clinical social worker, about coping with a chronic diagnosis and its emotional adjustments, referencing Kübler-Ross’ stages of grief [00:03:45]. Susan discussed the importance of self identity transformation post-diagnosis and the need for patience and self-compassion in finding new ways to move forward [00:08:34]. The value of inner strength, setting priorities, and support groups for reducing isolation and fostering compassion was emphasized [00:15:20]. The discussion concluded with a focus on post-traumatic growth, highlighting greater life appreciation and mental flexibility as key coping strategies [00:16:01].

Susan Y. Wegener, LCSW is a licensed clinical social worker who maintains a private psychotherapy practice in Austin, TX. Her clinical practice specializes in work with individuals coping with chronic medical diagnoses. She completed her undergraduate degree, in Psychology, from Skidmore College, Saratoga Springs N.Y., 1993 and her graduate degree, in Social Work from Columbia University, New York City in 1995. In addition to her private practice, she has worked in multiple medical settings throughout her career and helped to empower and support individuals from diagnosis through the adjustment process. She became a Partner in Care for the National Multiple Sclerosis Society in 2017 and is passionate about her work with individuals diagnosed with MS and various other neurological diagnoses. In her free time, she enjoys singing in a local chorus, cooking, swimming, and spending time with her family. Please see the following link to her workbook “Hold on to Hope.”

https://www.amazon.com/Hold-Hope-Overview-Strategies-Chronic/dp/1512218715

00:00 Introduction to the Podcast

00:37 Meet the Expert: Susan Wagner

01:00 Coping with a Chronic Diagnosis

01:47 The Emotional Adjustment Process

05:36 Understanding Self Identity Post-Diagnosis

08:34 Dealing with Denial

10:39 Coping Strategies for Shifting Self Identity

14:08 Finding Meaning and Purpose

14:26 Exploring the Impact of Diagnosis

15:25 Reflecting on Values and Strengths

16:06 Coping Strategies for Finding Meaning

16:29 The Role of Relationships and Support Systems

18:05 Prioritizing Self-Care and Realistic Goals

20:04 Finding Meaning in Suffering

20:15 The Concept of Post-Traumatic Growth

24:52 The Importance of Stillness and Self-Compassion

28:31 Mental Flexibility and Creative Thinking

30:02 Conclusion and Final Thoughts

The "Community Meets Clinic" podcast series introduces clinicians and healthcare personnel specializing in rare neuroimmune disorders. In this episode, Krissy Dilger of SRNA was joined by Dr. Jennifer Graves from UC San Diego Health. Dr. Graves shared her journey into neurology and neuroimmunology [00:02:14]. She discussed the multidisciplinary approach of her clinic at UC San Diego Health, emphasizing the importance of holistic care for patients with rare neuroimmune diseases [00:08:45]. Dr. Graves highlighted the significance of learning from rare disorders and her hope for future advancements in treatment and cures [00:16:32]. The conversation concluded with insights on maintaining well-being as a clinician and her faith in the collaborative efforts of the medical community [00:24:09]. You can view the medical profile of Dr. Graves here:

https://providers.ucsd.edu/details/32993/neurology

Jennifer Graves, MD, PhD, MAS is a Professor of Neurosciences and Vice Chair of Human Clinical Research at UCSD. She is Division Chief of Neuroimmunology and directs clinics at UCSD, the San Diego VA Hospital, and the Rady Children’s Hospital. She completed an MD and PhD in Biophysics at the University of Texas Southwestern. She trained in neurology at the University of Pennsylvania receiving the Arthur K. Asbury Award for Clinical Excellence. She completed two fellowships in Neuro-ophthalmology at the University of Pennsylvania and in Multiple Sclerosis and Clinical Research Methods at the University of California, San Francisco.

Her current research focuses on the role of biological age on neuroinflammatory disease expression and the development of wearable sensors to instrument the physical exam for 21st century neurological "vital signs." Her past work has included the study of genetic, environmental, and sex-related factors in neuroimmunological diseases and the application of visual outcome measures in these diseases. She is currently the North American Editor for the Multiple Sclerosis Journal.

00:00 Introduction and Welcome
00:59 Meet Dr. Jennifer Graves
01:35 Journey into Neuroimmunology
02:35 Clinic Overview and Services
03:31 Focus on Rare Neuroimmune Disorders
04:42 Multidisciplinary Clinic Team
06:27 Accepting New Patients
07:19 Self-Care as a Clinician
09:41 Commitment to Patients and Research
10:54 Hope for the Future
12:07 Conclusion

In the "ABCs of NMOSD" episode titled, "Managing the Dread of Relapse," Landy Thomas of SRNA was joined by Heather Dawn Sowalla. Heather shared her journey with neuromyelitis optica spectrum disorder (NMOSD) [00:01:54] and discussed the fear of relapse associated with the condition [00:14:04]. She described how long-term misdiagnosis and numerous flares impacted her life and mental health [00:16:02]. She shared coping strategies and emphasized the importance of a supportive community and the advancements in NMO treatment [00:25:49]. Finally, Heather encouraged those newly diagnosed to seek a doctor they connect with and lean on the community for support [00:34:12].

Heather Sowalla has lived most of her life in Pennsylvania. After earning her Bachelors degree in Environmental Science and her Masters degree in Environmental Studies, she returned home to her families dairy farm where she utilized her degree focusing on sustainable agriculture. Heather also spent two summer seasons working in Alaska with the Fish and Wildlife Department focusing on sustainable fisheries. Heather first became symptomatic for NMOSD around 2004 and has since lost a good deal of her vision, but she is doing well otherwise. Heather is newly engaged to Doug, a fellow NMOSD patient, and they plan on creating a life together in Vintondale, Pennsylvania.