NMOSD Your way - Canada

By: Alexion Astra Zeneca Rare Disease
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  • Summary

  • The NMOSD Your Way Podcast series features Neuromyelitis Optica Spectrum Disorder (NMOSD) patient ambassador, and host, Lelainia, alongside healthcare professionals, patient advocates, and caregivers. In each episode, participants share some deeply personal experiences about this rare, auto-immune condition. Their candid conversations unpack some of the mystery behind this little known condition and delve into the day-to-day realities of living with NMOSD. Participants also provide insights into living well, offering encouragement and information to others who may find themselves either newly diagnosed, or learning to live with NMOSD. Each episode features commentary from a patient and healthcare professional’s perspective and does not feature any treatment or product recommendations. 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/
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Episodes
  • NMOSD Your Way - Living Well With NMOSD

    NMOSD Your Way - Living Well With NMOSD
    Jun 3 2022
    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.
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    30 mins
  • NMOSD Your Way - NMO and Your Relationships

    NMOSD Your Way - NMO and Your Relationships
    May 20 2022
    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.
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    24 mins
  • NMOSD Your Way - How To Get The Most Out of Your Neuro Visit

    NMOSD Your Way - How To Get The Most Out of Your Neuro Visit
    May 6 2022
    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
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    23 mins

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