At the end of this mini-series, we will host a Q&A episode where Barbara Babcock will answer questions from the community. To submit your question, please visit:

https://srna.ngo/submit

In the first part of the “Ask the Expert, Research Edition” mini-series, “Parenting is Hard,” Barbara Babcock discussed the challenges faced by parents raising a child with a rare neuroimmune disorder and the impact on non-diagnosed siblings. Barbara shared her personal journey with transverse myelitis (TM) and how it led her to conduct research on this topic [00:02:20]. She explored themes from her research, highlighting fairness in parenting, and the role of sibling support [00:13:03]. Finally, Barbara emphasized the importance of adapting parenting strategies to balance the needs of all children in the family [00:15:42].

Barbara Babcock works as a Family Therapist in a child and adolescent mental health outpatient unit in the United Kingdom's National Health Service. In her private practice, she works with individuals and couples who are navigating challenging health issues and wish to get their lives back. She obtained her Master of Science in Family Therapy from the Institute of Psychiatry, Psychology, and Neuroscience at King's College London. Barbara also has a Master of Arts in Coaching Psychology/Psychological Coaching and her dissertation research focused on the impact that a systemic approach to coaching has on the wellbeing of adults who have a rare neuroimmune disorder and their primary caregivers. Previously, she was Chair of the Transverse Myelitis Society, from 2013 to 2016, and led their Family Weekend from 2015 to 2019, an event to support families who have a child/adolescent with a rare neuroimmune disorder to discover their potential through challenging outdoor activities. She had transverse myelitis in 2008 and is originally from Pennsylvania, USA. You can contact her at barbara@returntowellness.co.uk and her website is www.returntowellness.co.uk

00:00 Introduction

01:26 Meet Barbara Babcock: A Journey into Family Therapy

02:20 Barbara's Personal Experience with TM

03:20 Creating Support Systems for Families

06:35 Research Focus: Parenting and Sibling Dynamics

13:03 Themes from the Research

15:42 The Importance of Fairness and Balance

18:38 Challenges and Guilt in Parenting

24:33 Conclusion

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.

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