In our 8th episode, Living Well With NMOSD, the Importance of managing pain and its impact on mental health; Lelainia sits down with Dr Reebye, a Physical Medicine and Rehabilitation specialist at the University of British Columbia Multiple Sclerosis and Neuromyelitis Optica Clinic and an attending physician at GF Strong Rehabilitation Center in Vancouver. Dr. Reebye explains the nuances of pain in NMO, the ways that it can affect our mental health & wellbeing and how patients and their care teams can work together to manage pain and reduce its impact on our lives. He helps us understand what a physiatrist is and why is it important to have a physiatrist on our care team. And he describes who else can work with to help patients with NMOSD. He explains what types of complementary therapies he uses with his patients and why. Dr. Reebye shares what types of pain issues NMO patients typically experience (spasticity, neuropathy, etc.) He illustrates how and why the pain in NMO patients experience is different from the kind of pain a healthy person might experience. And he reveals the most challenging aspects of helping NMO patients who live with chronic pain. Dr. Reebye also describes how pain impact our mental health. He explains how NMO patients struggle with being able to get a good night’s rest because of the pain they experience. And how lack of sleep affects pain levels and he provides tips of what can we do to improve our sleep. And Dr. Reebye shares what’s one thing he wishes all NMO patients knew about living with pain. Our Guests: Dr. Rajiv Reebye is a Physical Medicine and Rehabilitation (PMR) specialist and Clinical Associate Professor in the department of Medicine at the University of British Columbia (UBC), Vancouver, Canada. Dr. Reebye is a Fellow of the Royal College of Physicians of Canada (FRCPC) and holds a specialist certificate in Physical Medicine and Rehabilitation from the Royal College of Physicians and Surgeons of Canada. He is the chair of the competency committee for the UBC pain fellowship program at UBC. He is an attending physician on the inpatient neuro-musculoskeletal program (NMS) and on the outpatient acquired brain injury and NMS programs at GF Strong Rehabilitation Center, Vancouver, Canada. He is a consulting physician at the UBC Multiple Sclerosis (MS) and Neuromyelitis Optica (NMO) Clinic since 2007. He works closely with his neurology colleagues in helping maximize the abilities of patients with MS and NMO in his clinics at UBC, GF Strong Rehabilitation Centre and his community New Westminster rehabilitation clinic. His special clinical interests include treatment of neuropathic pain and spasticity, as well as neuro-rehabilitation. Dr. Reebye is the director of the New Westminster Rehabilitation Medicine spasticity clinic - a community-based spasticity clinic focusing on the treatment of patients with adult spasticity including patients with MS and NMO. His research and teaching interests include neuropathic pain management, neuro-rehabilitation, adjunctive therapy post botulinum toxin injections for spasticity and use of ultrasound to assess muscle changes post spasticity and for injection of botulinum toxin for the treatment of spasticity. Dr. Reebye enjoys clinical teaching and was awarded the Patricia Clugston Award for Excellence in teaching and the Duncan Murray excellence in teaching award from the UBC division of PMR. He was also recently awarded the 2021 UBC Faculty of Medicine Continuing Professional Development award. Recommended resources available: Pain BC https://painbc.ca/ People in Pain Network https://www.pipain.com/ Solutions for Kids in Pain (SKIP) https://kidsinpain.ca/ Please visit https://nmosd.ca/ for more information on what NMOSD is, how it affects the body, tips for daily life and how to discuss it with your doctor.

In our 7th episode, NMO and your Relationships, Lelainia sits down with Cat Anderson, a Partner and Spiritual Director at REACH Trauma Response consulting. Cat has trained in Critical Incident Stress Management and as an End-of-Life Doula, working with people of all faiths or no faith, through loss, grief and bereavement using trauma informed, trauma sensitive, and culturally safe approaches. In this episode, Cat helps us understand how honesty and connection can enhance our relationships, how we can build and strengthen our self-esteem as people living with chronic illness and disability and reminds us of the importance of having compassion for ourselves. She explains what kind of impact a diagnosis of a rare disease such as NMO can have on a relationship. And Cat discusses the stigma of being chronically ill or disabled and how it can affect self-esteem, and what can we do to counteract those negative messages. She also provides tips on approaches and considerations about the disclosure of information about our health conditions when entering into new relationships. Cat describes some of the positive attributes and gifts that we bring to our relationships as we navigate living with a rare disease. She explains how to make space in our lives and relationships to just be a partner rather than a patient. Cat explains how being a caregiver for someone with NMO can be really challenging, how caregivers can look after their own health and well-being to avoid burnout. And she also shares with us additional resources that she recommends. Our Guests: Cat Anderson, REACH Partner and Spiritual Director. Cat is highly experienced in inclusive, non-judgmental Spiritual Care, accompanying those looking for meaning in life, processing difficult experiences, and accepting what cannot be changed. She is trained in Critical Incident Stress Management and as an End-of-Life Doula, working with people of all faiths/no faith, through loss, grief, and bereavement. Cat has spent most of her life facilitating individuals and community groups in connecting relationally to love and purpose by using trauma informed, trauma sensitive and culturally safe approaches. Informed by the practise of mindfulness, her accompaniment is always aimed at creating spaces where people can feel safe and nurtured as they transition towards leading healthier, more awake, and empowered lives. She employs a contemplative, and non-pathologizing approach to relational interconnection, which supports the human experience and encourages expansive living within all domains of life; physical, mental, emotional, and spiritual. Recommended resources available: NMO/MOG Support Groups & Pages https://www.sumairafoundation.org/wp-content/uploads/2022/01/NMOSD-MOG-AD-Groups-and-PagesPresentation1-1.pdf Canadian MS Society peer support https://mssociety.ca/support-services/ms-peer-support-program SRNA online Peer Support https://wearesrna.org/online-support-meetings/ Rare Disease Foundation: Mental Health & Wellness Program https://rarediseasefoundation.org/pages/mental-health-wellness-program REACH Trauma Response Consulting services www.reachtrauma.com Please visit www.NMOSD.ca for more information on what NMOSD is, how it affects the body, tips for daily life and how to discuss it with your doctor. The podcast is intended exclusively for the residents of Canada and is subject to all applicable laws and regulations therein. The podcast is intended for informational, personal and non-commercial purposes only. Persons having any specific questions, regarding diagnosis or treatment, are advised to contact their healthcare provider. This podcast was made possible with support from Alexion, AstraZeneca Rare Disease. For further information about your medical condition, please talk to your healthcare professional. All rights reserved. Alexion Pharma Canada Corp.

In our 6th episode: How to get the most out of your Neuro visit, Lelainia talks with Neurologist and Researcher, Dr. Galina Vorobeychik, who is the Founder and Director of the Fraser Health Multiple Sclerosis Clinic at Burnaby Hospital, and a Clinical Assistant Professor of Neurology for the Department of Medicine at the University of British Columbia. Dr. Vorobeychik was also the recipient of the MS Society’s National Award of Merit in 2016. In this episode, Dr. Vorobeychik shares the importance of a team-based approach to treating NMO patients, and explains the ways in which members of that team can contribute to optimal care, and how we as patients can partner with our neurologists to ensure we get the best care possible. Dr. Vorobeychik describes how we can elevate and give voice to our concerns and make room for priority topics during visits and she explains the benefits of having a companion or caregiver present. She also explains what kind of testing NMO patients routinely have in Canada, how often and why. She also provides insights on how to approach and discuss depression and NMO with your healthcare practitioner. As part of a team-based approach she explains the role of a neuro-psychologist and differences between practitioners including: occupational therapists, neurology nurses and nurses in general. Dr. Vorobeychik also shares practical examples of a high performing team-basedmodel in her clinic and how that set up is helpful to her patients, and she spells out essential tips and considerations in preparing for telephone visits developed in collaboration with nurses. Our Guests:Dr. Galina Vorobeychik, MD, FRCPC, FAAN. Director, Fraser Health Multiple Sclerosis Clinic, Burnaby Hospital. Clinical Assistant Professor, Neurology; Dept. of Medicine, UBC Dr. Galina Vorobeychik completed a B. Nursing, Medical school in Moscow, and neurology residency training with a fellowship in Multiple Sclerosis at UBC. The late Dr. Donald Paty (Pay-Tee), who was her inspiring mentor as the Head of Neurology at UBC, advanced her passion and commitment to understanding and helping patients. In addition to her busy general neurology practice, in 2004 she founded the Fraser Health Multiple Sclerosis Clinic and has been the director of it since that time. There are more than 4000 patients with multiple sclerosis in this unique community-based clinic. The multidisciplinary team emphasizes the five C’s of clinical care: Comprehensive, Coordinated, Community based Close to home Care of MS patients. She has been active in Multiple Sclerosis Research since 1994 and has been Principal Investigator for more than 65 research projects, including collaborative projects in mobility, immunology and genetics with SFU and UBC. She published 27 paper and trained multiple clinical fellows, residents (from UBC and out-of-province), IMGs, medical and undergraduate students, and MS nurses. Five of her medical students are recipients of Medical Student Research Scholarships from Consortium of Multiple Sclerosis Centers of North America, Canadian EndMS program, and MS Society of Canada. She takes pride in that more than 15 of her research assistants were accepted to the different medical schools. She received a MS Society's National Award of Merit in 2016. As the lead neurologist at Burnaby Hospital, her proactive and enthusiastic approach to recruitment led to Burnaby Hospital growing from two neurologists in 2004 to ten today. She is a Fellow of American Academy of Neurology and serves on Care Delivery Subcommittee, a long-standing Treasurer of Neurology division, BC Medical Association, and member of MSDBAAC (BC Parmacare). For more information about NMO: MS Society of Canada: www.mssociety.ca Preparing for your Virtual Visit with your HCP: hwww.msology.ca/wp-content/uploads/2021/11/Preparing-for-your-telephone-visit.pdf

In our fifth episode, In Sickness & In Health: When Loved Ones Become Caregivers, Andrea, a MOG-AD patient advocate and James, her husband and caregiver speak candidly about the ups and downs of adjusting to life after Andrea’s diagnosis and subsequent vision loss. They share how they've worked together to restore Andrea’s independence, the life changing impact of working with a guide dog and how adjusting to their new normal has strengthened their relationship. Andrea describes how her life was before getting sick and in which ways their lives change with a diagnosis. And James explains how was it for him to go through the diagnosis and changes with Andrea. James also discusses how they've sought out support for him as a partner and caregiver. Andrea and James reveal when there have been times where the tables turned and Andrea was caring for James. Andrea and James explain how life has been having a guide dog as part of their daily lives. Andrea and James provide insights and advice for those faced with a diagnosis such as MOG or NMOSD. Recommended resources available: The Sumaira Foundation: https://www.sumairafoundation.org/tsf-canada-welcome-jennifer/ The MOG project: https://mogproject.org/ The Guthy-Jackson Foundation: https://guthyjacksonfoundation.org/ The MS Society of Canada: https://mssociety.ca/ Fighting Blindness Canada:https://www.fightingblindness.ca/ About our Guests: Andrea Mitchell has had a relapsing form of MOG-AD since October 2011. It took 2 years for her to find the right diagnosis and due to a lack of aggressive treatment, she lost sight in both of her eyes. MOG-AD has also affected her hearing and she often suffers from daily pain all over her body and continually fights off fatigue. She has a very loving and supportive husband named James whois passionate about advocacy in the caregiver role. They have a loving retired guide dog (Newcastle) and a beautiful yellow lab (Indy) who has served as Andrea’s new guide dog since October 2021. Her passion is to educate, empower, promote advocacy and support others dealing with this rare condition. She enjoys helping those who are newly blind find resources for gaining their independence. As an Executive Board Member for The MOG Project, she assists in providing educational materials, conducts support groups and connects with others through social media and email inquiries. Please visit https://www.NMOSD.ca/ for more information on what NMOSD is, how it affects the body, tips for daily life and how to discuss it with your doctor. The podcast is intended exclusively for the residents of Canada and is subject to all applicable laws and regulations therein. The podcast is intended for informational, personal and non-commercial purposes only. Persons having any specific questions, regarding diagnosis or treatment, are advised to contact their healthcare provider. This podcast was made possible with support from Alexion, AstraZeneca Rare Disease. For further information about your medical condition, please talk to your healthcare professional. All rights reserved. Alexion Pharma Canada Corp. For more NMOSD information and resources, please visit https://nmosd.ca/

In this episode, we interview patient ambassador and host of the “NMOSD Your Way” podcast series, LelainiaLloyd. We get to know more about our host and her advocacy work in NMO. We discuss how Lelainia became involved in advocacy, the opportunities and challenges she has faced, and resources and tips for others thinking of becoming an advocate in the area of rare diseases. Lelainia explains what drives her decision in what advocacy projects she takes on and maintains a balance and ensures self-care. She describes when along this journey of becoming an advocate she actually realized that's what she is, an advocate. And what she finds the most fulfilling about advocacy. Lelainia spells out what she would have liked to have known at the beginning of her advocacy work and what is the one thing she looks forward to accomplishing still. Our Guest: Lelainia Lloyd have been living with Neuromyelitis Optica (NMO) since she was 12 years old. With an epic 30-year journey with this disease, from misdiagnosis to diagnosis to continuing to navigate a course through the obstacles of ignorance, ableism and a medical culture that sometimes misses the mark for patient-centred care. She believes knowledge is power and she is passionate about health literacy and knowledge translation. The purpose of this podcast is to make information accessible to NMO patients so that we are better equipped to make informed choices about our health. Each episode has been inspired by questions fellow patients have asked. Our community deserves answers and she is here to help us get them. Lelainia feeds her spirit by making art, writing, travelling, wheelchair curling, volunteering and spending time with her three grandsons who are the lights of her life. Lelainia was selected as a Rick Hansen Difference Maker in 2011, was awarded the Queen Elizabeth II Diamond Jubilee Medal for her lifetime of service to Canada in 2014 and was recently awarded the R. Paul KerstonCommunity Educator Award from the University of British Columbia. To learn more about NMOSD, visit: The Sumaira Foundation: https://www.sumairafoundation.org/tsf-canada-welcome-jennifer/ The Multiple Sclerosis Society of Canada at: https://www.mssociety.ca/ Please visit https://www.NMOSD.ca/ for more information on what NMOSD is, how it affects the body, tips for daily life and how to discuss it with your doctor. The podcast is intended exclusively for the residents of Canada and is subject to all applicable laws and regulations therein. The podcast is intended for informational, personal and non-commercial purposes only. Persons having any specific questions, regarding diagnosis or treatment, are advised to contact their healthcare provider. This podcast was made possible with support from Alexion, AstraZeneca Rare Disease. For further information about your medical condition, please talk to your healthcare professional. All rights reserved. Alexion Pharma Canada Corp. For more NMOSD information and resources, please visit https://nmosd.ca/

In our third episode of NMOSD Your Way, Recognizing An Attack, our special guest is Dr. Dalia Rotstein, Assistant Professor of Medicine at the University of Toronto and Neurologist specializing in Multiple Sclerosisand other demyelinating diseases. She is also the Principal Investigator for CANOPTICS, the first Canadian national prospective study to investigate adults with NMOSD, MOG Antibody Disease, and other atypical demyelinating conditions. In this episode, Dr. Rotstein helps us understand how to recognize the early warning signs of an NMO attack, how we canadvocate for ourselves when seeking care during a relapseand what to expect during the recovery process. She breaks down symptoms of an attack and explains when it’s time to call our Neurologist. Dr Rotstein explains the difference between a pseudo attackand a relapse. She sheds light on resources available to support both patient’s physical and mental health well-being and recovery. Dr Rotstein delves into the healing process and determining after an attackat what point the damage may be considered permanent. Finally, she describes a national observational study monitoring people with NMOSD at all stages of the disease to see how they do over time. Aiming to learn more about the disease and how can NMOSD be diagnosed at an earlier stage. Our Host: Lelainia Lloyd has been living with Neuromyelitis Optica Spectrum Disorder (NMOSD) since she was 12 years old. She has experienced an epic 30-year journey living with NMOSD, from misdiagnosis to diagnosis and continues to navigate the obstacles of ignorance, ableism, and a medical culture that sometimes misses the mark for patient-centred care. The purpose of this podcast is to make information accessible to NMOSD patients and the community. Each episode has been inspired by questions from fellow patients and will include: signs, attacks, symptoms, self-care, relapses, managing mental health and pain to name a few. Our Guest: Dr. Dalia Rotstein is an Assistant Professor of Medicine at the University of Toronto and Neurologist specialized in Multiple Sclerosis (MS) and other demyelinating diseases. Her research is focused on the epidemiology of multiple sclerosis and Neuromyelitis Optica spectrum disorder (NMOSD). She has a particular interest in the roles of gender, ethnicity, migration, and vitamin D in these conditions. She is the Principal Investigator for CANOPTICS, the first Canadian national prospective study to investigate adults with NMOSD, MOG Antibody Disease, and other atypical demyelinating conditions. http://www.mssociety.ca/ Please visit http://www.NMOSD.ca/ for more information on what NMOSD is, how it affects the body, tips for daily life and how to discuss it with your doctor. The podcast is intended exclusively for the residents of Canada and is subject to all applicable laws and regulations therein. The podcast is intended for informational, personal and non-commercial purposes only. Persons having any specific questions, regarding diagnosis or treatment, are advised to contact their healthcare provider. This podcast was made possible with support from Alexion, AstraZeneca Rare Disease. For further information about your medical condition, please talk to your healthcare professional. All rights reserved. Alexion Pharma Canada Corp. For more NMOSD information and resources, please visit https://nmosd.ca/

In our second episode, Neuromyelitis Optica & Multiple Sclerosis: What’s The Difference? we talk with Dr. David Selchen, a neurologist and Senior Consultant at the MS clinic at St. Michael’s Hospital in Toronto, Ontario. In this episode, Dr. Selchen explains the main differences between Multiple sclerosis and Neuromyelitis Optica diseases. He explains the importance of receiving a correct diagnosis and sheds light on recent advancements in care and treatment for NMO patients. He describes the accuracy in diagnostic testing for NMO and how rare is NMO compare to MS. Dr. Selchen also clarifies whether a patient can have both NMO and MS. Selchen provides a neurologist’s perspective on how NMO impacts a patient's quality of life and in a world with COVID-19 what precautions should be taken when we’re immunosuppressed. Finally, he explains how important collaborative care is and what inspires him to continue doing the important work he does. Our Host: Lelainia Lloyd has been living with Neuromyelitis Optica Spectrum Disorder (NMOSD) since she was 12 years old. She has experienced an epic 30-year journey living with NMOSD, from misdiagnosis to diagnosis and continues to navigate the obstacles of ignorance, ableism, and a medical culture that sometimes misses the mark for patient-centred care. The purpose of this podcast is to make information accessible to NMOSD patients and the community. Each episode has been inspired by questions from fellow patients and will include: signs, attacks, symptoms, self-care, relapses, managing mental health and pain to name a few. Our Guest: DANIEL H. SELCHEN, M.D., F.R.C.P. (C)DIVISION OF NEUROLOGY, St. Michael’s Hospital (Toronto, Ontario, Canada) Dr. Daniel Selchen was Head of the Division of Neurology at St. Michael’s Hospital, University of Toronto 2008-2018, Director of the Multiple Sclerosis Clinic at St. Michael’s 2014-2017, and Medical Director of the Regional Stroke Program for Southeast Toronto 2008-2020. Dr. Selchen is currently Senior Consultant in the MS clinic at St. Michael’s. Prior to joining St. Michael’s, Dr. Selchen was the Medical Director for the Neurology, Neurosurgery, and Musculoskeletal Programs at Trillium Health Centre, Director of the Multiple Sclerosis Clinic, and Medical Director of the West GTA Regional Stroke Network. Dr. Selchen’s academic and research interests include risk/benefit assessment and therapeutic decision making, treatment of aggressive multiple sclerosis, and hyperacute stroke management. Dr. Selchen was a Rhodes scholar and taught political philosophy prior to his medical career. https://www.mssociety.ca/ Please visit https://www.NMOSD.ca/ for more information on what NMOSD is, how it affects the body, tips for daily life and how to discuss it with your doctor. The podcast is intended exclusively for the residents of Canada and is subject to all applicable laws and regulations therein. The podcast is intended for informational, personal and non-commercial purposes only. Persons having any specific questions, regarding diagnosis or treatment, are advised to contact their healthcare provider. This podcast was made possible with support from Alexion, AstraZeneca Rare Disease. For further information about your medical condition, please talk to your healthcare professional. All rights reserved. Alexion Pharma Canada Corp. For more NMOSD information and resources, please visit https://nmosd.ca/

In our premiere episode, “Newly Diagnosed”, we talk with Sumaira Ahmed, patient advocate and founder of The Sumaira Foundation who is living with Neuromyelitis Optica (NMO). Sumaira shares what it was like to be newly diagnosed, the ways in which her life changed, and how that inspired her to create a foundation to help others facing this life altering disease. Our Host: Lelainia Lloyd has been living with Neuromyelitis Optica Spectrum Disorder (NMOSD) since she was 12 years old. She has experienced an epic 30-year journey living with NMOSD, from misdiagnosis to diagnosis and continues to navigate the obstacles of ignorance, ableism, and a medical culture that sometimes misses the mark for patient-centred care. The purpose of this podcast is to make information accessible to NMOSD patients and the community. Each episode has been inspired by questions from fellow patients and will include: signs, attacks, symptoms, self-care, relapses, managing mental health and pain to name a few. Our Guest: Prior to working in healthcare marketing and business development, Sumaira was an actress/model in Bangladesh and India and has starred in music videos and a health-related documentary. She is also a classically-trained Kathak dancer and has performed in notable venues. In the summer of 2014, Sumaira was diagnosed with sero-negative Neuromyelitis Optica. Within two months of her diagnosis, she founded The Sumaira Foundation dedicated to generating global awareness, finding a cure, patient advocacy, and creating communities of support for NMOSD and MOG-AD. In September 2021, Sumaira was honored with WEGO Health's "Best Kept Secret" Award recognizing her advocacy work in rare disease. www.sumairafoundation.org www.mssociety.ca Please visit www.NMOSD.ca for more information on what NMOSD is, how it affects the body, tips for daily life and how to discuss it with your doctor. The podcast is intended exclusively for the residents of Canada and is subject to all applicable laws and regulations therein. The podcast is intended for informational, personal and non-commercial purposes only. Persons having any specific questions, regarding diagnosis or treatment, are advised to contact their healthcare provider. This podcast was made possible with support from Alexion, AstraZeneca Rare Disease. For further information about your medical condition, please talk to your healthcare professional. All rights reserved. Alexion Pharma Canada Corp. For more NMOSD information and resources, please visit https://nmosd.ca/