Living Well with Multiple Sclerosis

Mindfulness and Self-compassion with Melanie Lown | S5E30

Welcome to Living Well with MS, where we are pleased to welcome Melanie Lown as our guest. Melanie is a mindfulness teacher, has an M.A. in Psychology, and follows the Overcoming MS Program. She talks to Geoff about her MS diagnosis, the power of mindfulness and the importance of self-compassion. Watch this episode on YouTube here.  Topics and Timestamps: 01:30 Melanie’s introduction and MS diagnosis. 03:58 Balancing self-advocacy with compassion for healthcare professionals. 07:07 Using a diagnosis to discover your purpose. 09:48 Discovering Overcoming MS. 12:02 Our lived experience is as valid as datasets. 13:29 DMTs and COVID. 16:31 The growing popularity of mindfulness in Western medicine. 21:45 Meditation physically changes the brain. 23:33 Depression and spiritualism are opposite sides of the same neural pathway. 27:54 The awakened brain vs. the achieving brain. 29:39 Activating the parasympathetic nervous system with self-compassion. 33:39 Emotions are not ‘good’ or ‘bad’. 35:44 Mindfully choosing your healthcare team and treatment. 42:22 Tips to incorporate mindfulness into your lifestyle. 47:54 Non-judgmental awareness. More info and links: Visit Melanie’s Website or follow her on Instagram: @welcometothemat. Melanie’s Recommended Meditation teachers and guides: Vinny Ferraro Amanda Gilbert Elisha Goldstein Tara Branch Davidji Insight Timer New to Overcoming MS? Visit our introductory page  Connect with others following Overcoming MS on the Live Well Hub Visit the Overcoming MS website Melanie’s Recommended Books: The Awakened Brain by Dr. Lisa Miller Self-Compassion by Kristin Neff How to Change Your Mind by Michael Pollan Radical Acceptance by Tara Brach Cured by Jeffrey Rediger Learned Hopefulness by Dr. Dan Tomasulo Melanie's Recommended Scientific Articles: Fredrickson, B. L., & Losada, M. F. (2005). Positive affect and the complex dynamics of human flourishing. American psychologist, 60(7), 678. Miller, L., Bansal, R., Wickramaratne, P., Hao, X., Tenke, C. E., Weissman, M. M., & Peterson, B. S. (2014). Neuroanatomical correlates of religiosity and spirituality: a study in adults at high and low familial risk for depression. JAMA psychiatry, 71(2), 128-135. Miller, L., Wickramaratne, P., Gameroff, M. J., Sage, M., Tenke, C. E., & Weissman, M. M. (2012). Religiosity and major depression in adults at high risk: a ten-year prospective study. American Journal of Psychiatry, 169(1), 89-94. Portnoff, L., McClintock, C., Lau, E., Choi, S., & Miller, L. (2017). Spirituality cuts in half the relative risk for depression: Findings from the United States, China, and India. Spirituality in Clinical Practice, 4(1), 22. Follow us on social media: Facebook Instagram YouTube Pinterest Don’t miss out:  Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org. Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. Support us:  If you enjoy this podcast and want to support the ongoing work of Overcoming MS, we would really appreciate it if you could leave a donation here. Every donation, however small, helps us to share the podcast with more people on how to live well with MS.

Developing new DMTs with Professor Stephen L. Hauser | S5E29

Welcome to Living Well with MS. In this episode, we are delighted to welcome neurologist, Professor Stephen L. Hauser as our guest. Professor Hauser has been researching MS since the 1970s, and his team’s research led to the development of the disease-modifying therapy ‘Ocrevus’. He talks to Geoff about the future of DMTs for MS, what autoimmunity is, and how he and his team developed one of the most world-renowned MS DMTs.   Questions and Timestamps 01:45 Can you introduce yourself and tell us about your work? 04:23 What is autoimmunity and how does it relate to MS and inflammation? 06:37 Are some people more prone to develop autoimmune conditions? 10:11 How can a person get the most out of the time they have with their neurologist? 14:01 The benefits of participating in a clinical trial. 16:01 How is MS similar or different from other brain conditions? 20:11 Is there a role of infection in brain diseases like MS? 23:10 The role of hygiene in autoimmunity. 25:40 Book excerpt and how Ocrevus was developed. 32:53 What’s next in B-cell research and MS? 37:58 What tips do you have for lifestyle modifications for people who have MS? More info and links: Read more about Professor Hauser from the American Brain Foundation Read The Face Laughs While the Brain Cries: The Education of a Doctor Read the key episode takeaways and Professor Hauser’s bio New to Overcoming MS? Visit our introductory page Connect with others following Overcoming MS on the Live Well Hub Visit the Overcoming MS website Follow us on social media: Facebook Instagram YouTube Pinterest Don’t miss out:  Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episode here. If you like Living Well with MS, please leave a 5-star review. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org. Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation.  

Webinar Highlights: Movement and Breathing with Gillian Robinson | S5E28

In this episode, we are sharing highlights from our webinar, ‘Movement and Breathing Better whilst Living Well with Overcoming MS’ with Gillian Robinson. Gillian is a physiotherapist at the MS Therapy Centre in Lothian, Scotland. She discusses how MS affects breathing, how to breathe better and the importance of physical activity for people with MS. This webinar was recorded as part of our Finding Hope with Overcoming MS webinar series. Watch the original webinar here. Keep reading for the key episode takeaways and Gillian’s bio. Topics and Timestamps 00:57 Why and how we should breathe. 04:22 How MS can affect respiration.   09:13 Consequences of ineffective breathing. 11:00 Monitoring and slowing your breathing helps with fatigue and stress management. 14:05 Posture and nasal breathing are important. 20:19 Deep breathing exercises can be part of your meditation practice to strengthen respiratory muscles. 27:23 Benefits of exercise for people with MS. 33:00 Include both aerobic and anaerobic activities in your routine. 36:38 Vestibular retraining, physiotherapy, Tai Chi and Thera Bands can be helpful for people with MS. 38:16 Breathing exercises can strengthen your pelvic floor and abdominals. 40:06 Virtual reality and visualisation can both be used to improve wellbeing. 41:53 Noticing your breathing is the first step to improving it. Selected Key Takeaways Breathing can be affected by MS, so it’s important to keep active to strengthen muscles in the respiratory system.04:24 “It's only in recent years that it's been demonstrated that the respiratory system can be affected quite early on in MS. I think most of us are aware that it can be affected in the more advanced stages of MS. [These early effects are] logical really, as we know that muscle strength can be affected by MS in the disease process itself, as wherever your lesions are, they can cause muscle weakness in the rest of our body. So, it makes sense that it will cause muscle weakness in our respiratory system. Not only is this primary weakness a result of the MS itself, but if you're not using [your] muscles and reducing levels of activity, you can develop secondary weakness or deconditioning.” Nasal breathing is really important for optimal health.17:17 “Nasal Breathing is really important. We know that chronic mouth breathing can cause problems with your respiratory system and your lung function and certainly impair the effectiveness of your breathing. You can get dental problems by breathing through your mouth, and you're losing 40% more moisture than you do by breathing through your nose.” Visualisation whilst breathing can help strengthen muscles. 41:00 “An interesting bit of research out there shows that through visualisation activities alone, you can improve muscle strength. So, if you struggle with activity and getting your body moving, visualise activities that you might enjoy. The more detail that you can add to your mental imagery, the better and the more likelihood of success. Just try to bring your awareness of your breath. We've talked about how important breathing technique and exercising your respiratory muscles is.If your breathing is optimised, it most definitely has a knock-on effect on your wider wellbeing.” Noticing your breathing is the first step to improving it.42:39 "Notice your breathing responses during activity, so notice what your breathing patterns do. Do you start to get more shallow as you get more effortful? Do you start to breathe through your mouth? Be more mindful of how your breathing responds to activity." Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips. More info and links: Watch the original webinar and access downloadable content Find out more about the breathing techniques Gillian has mentioned Find out more about the Wim Hof method New to Overcoming MS? Visit our introductory page Connect with others following Overcoming MS on the Live Well Hub Visit the Overcoming MS website Follow us on social media: Facebook Instagram YouTube Pinterest Don’t miss out:  Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episode here. If you like Living Well with MS, please leave a 5-star review. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org. Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation. Gillian’s bio: Gillian’s qualifications and career background After graduating from Dundee University with a BSc Hons in Anatomical Sciences, Gillian went on to study physiotherapy. She graduated in 2002 and worked in Croydon University Hospital for 10 years where she cemented her passion for neurology. During her time in Croydon, she completed an MSc in Acupuncture from Coventry University, a useful tool for the treatment box. The MS Therapy Centre In 2012, Gillian moved to Edinburgh where she began working at the MS Therapy Centre Lothian as Lead Physiotherapist. Here she has developed a reputable service for those who attend the centre and has established strong links with the medical and healthcare professionals who are involved in their clients’ care. The ethos promoted by the MS Therapy Centre is one of supported self-management, encouraging and enabling the clients to understand and take control of their symptoms. Within her role Gillian is dedicated to helping people explore their capabilities and facilitate them to achieve a fitter, healthier, happier self. The Health Design Collective – designing products to support people with MS. Gillian is also a director of the social enterprise, Health Design Collective. Set up in 2019, they have a vision to create innovative products for people with long-term health conditions through co-design with the end users. Their first product currently under development is footwear for people with foot drop.

A Newfound Gratitude for Health with Mike Kennedy | S5E27

Welcome to Living Well with MS. In this episode, we are pleased to welcome Mike Kennedy as our guest. Mike was diagnosed with MS over 10 years ago and is an advocate for living a healthy life and following the Overcoming MS Program. He will be discussing with Geoff the lessons he has learnt along the way, including when he deviated from the Overcoming MS diet. Keep reading for the key episode takeaways. Questions and Timestamps: 00:33 Could you introduce yourself? 02:32 Can you tell us about your MS and Overcoming MS journey? 11:21 Unhealthy vegan food 18:25 Experience with first neurologist 21:42 Cryotherapy or cold exposure 25:26 Hyperbaric oxygen therapy 29:50 Homeopathy 33:15 The placebo effect 38:31 Family prevention   43:44 Tea and plant-based milks 45:38 Matt Embry’s influence 49:28 What advice would you give to someone newly diagnosed? Selected Key Takeaways: Change your life for life15:01 “If I was told right now, ‘Mike, you no longer have MS, you will not [get] it again', I would not go back to eating cheese. I would not go back to eating dairy. I would not go back to eating big fat burgers. Honestly, I think that it's all habitual because these are the habits that I built around my life.” Cryotherapy and hyperbaric oxygen therapy helped Mike’s inflammation. 23:13 “At the 10-year mark, my symptoms at that time were a little more pronounced. I tried hyperbaric oxygen [therapy] for an hour and then cryotherapy. I can only say it was the most incredible relief or feeling I've [ever] experienced. [When] I got out of the cryotherapy tank, I felt like I could run a marathon, and I have never run a marathon. All the inflammation in my legs [was] gone; it was just like fresh blood came into my legs and it was the most incredible feeling. I recommend anyone with problems with inflammation or MS to try cryotherapy.” There can be a silver lining to an MS diagnosis53:40 “Believe me, it's not all bad news. There's so much you can do to make this situation much better for yourself. In fact, in so many ways, I'm a lot healthier now than I would have been had I not had MS. I know that sounds pretty strange, but it's true. I got healthier; my weight’s a lot healthier. I'm not saying I wouldn't wish I didn't have it, but it certainly gives me a lot of positives as well as negatives, without doubt.” Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips. More info and links: Connect with Mike on Twitter @mrmikekennedy or Instagram @miketonykennedy Watch the BBC programme 'Ultraprocessed Foods: A recipe for ill health?' Visit Conor Devine’s MS site Watch 'The Placebo Experiment: Can My Brain Cure My Body?' by Dr Michael Mosley Listen to Trevor Wicken's podcast episode MS Workouts with Overcoming MS Listen to Dr Gretchen Hawley's podcast episodes: Season 2 episode 18 Season 3 episode 39 Listen to Dom Thorpe's podcast episode Listen to Matt Embry's podcast episode Find out more about Mike’s mum’s charity, ‘Ladies Fighting Breast Cancer’ New to Overcoming MS? Visit our introductory page  Connect with others following Overcoming MS on the Live Well Hub Visit the Overcoming MS website Follow us on social media: Facebook Instagram YouTube Pinterest Don’t miss out:  Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org. Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. Support us:  If you enjoy this podcast and want to support the ongoing work of Overcoming MS, we would really appreciate it if you could leave a donation here. Every donation, however small, helps us to share the podcast with more people on how to live well with MS.

Assistive Technology with Kristi Peak-Oliveira | S5E26

Welcome to Living Well with MS. In this episode, we are pleased to welcome Overcoming MS Ambassador Kristi Peak-Oliveira, who has been following the Overcoming MS Program since 2016 and is an Ambassador for the Boston Circle. She is also a pathologist and the assistant director for assistive technology services at ‘Easterseals Massachusetts’, whose clients include people with multiple sclerosis. Watch this episode on YouTube here. Keep reading for the key episode takeaways and Kristi's bio. Questions and Timestamps 01:00 Could you tell us a bit about yourself and your MS diagnosis? 05:08 How did you come across Overcoming MS? 07:14 Tell us about how you became the Ambassador for the Boston Circle. 11:44 Have you talked to your neurologist about Overcoming MS? 18:28 You work as a speech pathologist and as the assistant director for assistive technology services at ‘Easterseals Massachusetts’. Could you tell us what that is? 21:08 What are some examples of assistive technology that can help symptoms like cog fog and memory issues? 24:54 Do you have examples of assistive technology for fine motor control as well? 26:13 Is there anything we can do ourselves to make our devices more accessible? 26:59 Can you tell us about your upcoming trip to Peru, to take assistive technology to orphan children with disabilities? 31:39 You have always loved dancing, are you still able to dance with your MS symptoms? 35:41 What advice would you offer to someone who has been newly diagnosed with MS? Selected Key Takeaways Assistive technology helps people complete daily tasks more independently.   18:45 “Assistive technology is a broad category, but it's basically almost anything that can compensate for your disabilities to help you access different life skills, whether it's working on a computer, cleaning your house, or remembering to take your medication. Augmentative communication is what I do as a speech pathologist, [and] is a subset of assistive technology. It focuses on someone who is not able to use speech as their primary means of communication. So, we're helping them with technology.” Kristi credits the Overcoming MS Program for giving her the confidence to take a humanitarian trip to Peru. 30:32 “My yoga teacher got this idea; it's called ‘Project Give a Voice’. I'm going with her in September for two weeks to bring augmentative communication to students in Peru who are not able to speak. I'm really excited about it [and] she's excited about it [too]. It's because of Overcoming MS. If it wasn't for Overcoming MS, I might not ever have tried yoga or ended up with this teacher. [Following] Overcoming MS gives me the confidence to know that I'm going to physically be able to participate in this trip.” Finding a reason to live well helps Kristi stay motivated. 32:58 “You have to find something that's really motivating. For me, it was my dance class. I didn't want to give up my dance class, I love the women there. That was the thing that really motivated me to dig into Overcoming MS. Over time, foot drop was an issue [and] I've definitely fallen in the class. But over time, I've definitely noticed especially my right foot, (my right side is more affected) has gained in strength.” Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips. More info and links: Learn more about Project Give a Voice Easterseals Massachusetts Home Page Easterseals Massachusetts assistive technology page Read a guide for doctors and other healthcare workers when speaking with patients about assistive technology and MS. It was written by a speech-language pathologist who works at a nursing home dedicated to people with progressive neurological diseases whom Kristi knows professionally. Listen to the episodes Vickie the Ambassador from Connecticut was on: Coffee Break Building Community through Overcoming MS Circles New to Overcoming MS? Visit our introductory page  Connect with others following Overcoming MS on the Live Well Hub Visit the Overcoming MS website Follow us on social media: Facebook Instagram YouTube Pinterest Don’t miss out:  Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org. Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. Support us:  If you enjoy this podcast and want to support the ongoing work of Overcoming MS, we would really appreciate it if you could leave a donation here. Every donation, however small, helps us to share the podcast with more people on how to live well with MS. Kristi’s bio: Kristi’s MS and Overcoming MS journey Kristi was diagnosed with MS in July of 2016 and started following the Overcoming MS program later that year. She has been a part of the Boston, US Circle since it began and now serves as the Ambassador. Kristi’s personal life Kristi is married with two adult children, and thanks to Overcoming MS continues to enjoy activities such as yoga, dance class, gardening, and singing in her church choir. Kristi’s career Kristi has been a speech-language pathologist for over 30 years and currently serves as assistant director of assistive technology services at Easterseals Massachusetts, a not-for-profit organisation dedicated to serving the needs of individuals with disabilities. Clients include those with multiple sclerosis, and they are provided with assistive technology (AT) solutions to compensate for sensory, physical and cognitive challenges. Kristi has used AT solutions herself to deal with MS symptoms and exacerbations and is happy to share the information so others with MS can benefit.

HSCT with Professor Richard Burt | S5E25

Welcome to Living Well with MS, where we are pleased to welcome Professor Richard Burt as our guest! Professor Burt is a leading expert in hematopoietic stem cell transplantation (HSCT) for autoimmune diseases including MS and has been awarded a number of prestigious accolades. Watch this episode on YouTube here. Keep reading for the key episode takeaways and Professor Burt’s bio. Questions and Timestamps 02:35 Could you introduce yourself and tell us about your work with patients with autoimmune conditions and MS? 12:03 What do you think about the idea of flipping the model and offering the most aggressive treatment options to patients first? 16:27 What are the risks of HSCT? 21:18 Can you tell us about the costs associated with stem cell transplantation? 24:13 What type of patients respond best to HSCT? 31:16 Do you see a future where doctors are trained in multiple fields and understand the whole picture of autoimmunity? 38:10 If someone’s interested in exploring HSCT, what should they look for in a clinic or physician? 41:47 HSCT has a high upfront cost but how does that compare to being on an MS drug for years or perhaps a lifetime? 53:50 The Dalai Lama wrote the introduction to your book 'Everyday Miracles'. How did that come about? Selected Key Takeaways Randomised controlled trial results for HSCT have been very positive 05:12 “In a randomised trial, [HSCT] was just hands down much better than any [other] drug. All the drugs you use for MS are based on approval for slowing disease activity. That is slowing the number of relapses or slowing the rate of progression of disability but not stopping it or not reversing it. Often you stay on these drugs indefinitely. A transplant, on the other hand, is a one-time treatment and afterwards, you get better, your neurologic disability reverses, nothing else had done that.” It’s important to consider the disease trajectory, risks, and benefits of stem cell transplants. 14:02 “MS causes accelerated loss of brain volume, that is brain atrophy. Unfortunately, as we age, we get brain atrophy and a normal, very low, but normal decline. But once you get MS, that decline takes a much sharper drop, and you're losing neural function a lot faster than normal ageing. For some reason, that's not viewed as a sub-acute or semi-emergency situation that you want to reverse. Traditional drugs have mostly just slowed that rate of decline, but it's still faster than what happens with normal ageing. I would think a more aggressive approach up front would be wise, but you always have to remember [the] risk–benefit. If we could do a stem cell transplant with zero risk of mortality, I would say absolutely for everybody. But you can't do that right now.” A medical speciality and institute for autoimmunology could help push the field forward34:20 “There are 80 different autoimmune diseases that I can think of offhand. They're all “homeless” in different departments like Crohn's disease [which is] in gastroenterology, Scleroderma [which] is in rheumatology, and multiple sclerosis [which] is in neurology. They're all separated [into] different areas. If there was a better organisation, beginning at a federal level with a national institute of autoimmune diseases that supports centres of excellence around the country, that would really help this go forward.” Want to learn more about living a full and happy life with multiple sclerosis?  Sign up to our newsletter to hear our latest tips. More info and links: Visit Professor Burt’s website Read Professor Burt’s new book on HSCT for autoimmune diseases ‘Everyday Miracles’ Check out Professor Burt’s medical textbook ‘Hematopoietic Stem Cell Transplantation and Cellular Therapies for Autoimmune Diseases’ Find out more about the StarMS trial in the UK New to Overcoming MS? Visit our introductory page  Connect with others following Overcoming MS on the Live Well Hub Visit the Overcoming MS website Follow us on social media: Facebook Instagram YouTube Pinterest Don’t miss out:  Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org. Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. Support us:  If you enjoy this podcast and want to support the ongoing work of Overcoming MS, we would really appreciate it if you could leave a donation here. Every donation, however small, helps us to share the podcast with more people on how to live well with MS. Professor Richard Burt’s bio: Professor Richard Burt is a Fulbright Scholar, Professor of Medicine at Scripps Health Care, tenured retired Professor of Medicine at Northwestern University, and CEO of Genani Biotechnology. He endeavored for 35 years, first with animal models and then with some of the world’s first clinical trials, to bring the field of stem cell and cellular therapy to the patients’ bedsides. Publishing Professor Burt has published more than 145 first-author articles and is the editor of four medical textbooks. He was the first Autoimmune Committee Chairperson for the International Bone Marrow Transplant Registry (IBMTR) and was the principal investigator of a National Institutes of Health (NIH) $10 million multicenter contract to develop stem cell clinical trials for autoimmune diseases. Hematopoietic stem cell transplants Professor Burt performed America’s first hematopoietic stem cell transplant (HSCT) for multiple sclerosis (MS), systemic lupus erythematosus (SLE), Crohn’s disease (CD), stiff person syndrome (SPS), and chronic inflammatory demyelinating polyneuropathy (CIDP) and published the world’s first randomised clinical stem cell transplantation trials for systemic sclerosis and multiple sclerosis. Awards and achievements He has been awarded the Leukemia Scholar of America, the Lupus Foundation of America Fidelitas Award, the van Bekkum Award by the European Society for Blood and Marrow Transplantation, the Distinguished Clinical Achievement Award by the Clinical Research Forum, and the European Group for Blood and Marrow Transplantation Clinical Achievement Award. Professor Burt was presented in Vatican City, Rome, with the “Keys to the Vatican,” was a speaker at the Festival of Thinkers in Leadership in Healthcare in the United Arab Emirates and chaired the biotechnology session at the Baku Azerbaijan International Humanitarian Forum. Professor Burt was recognised by Science Illustrated for accomplishing one of the top 10 medical breakthroughs for the next 10 years and by Scientific American as one of the top 50 individuals for improving humanity and outstanding leadership.

Menopause and MS Roundtable | S5E24

In this episode of Living Well with MS, Overcoming MS Medical Advisor Dr Jonathan White, who is an Obstetrician and Gynaecologist, welcomes Neurologist, Dr Kate Petheram, and Gynaecologist and Menopause specialist, Dr Siobhan Kirk for a round-table discussion on multiple sclerosis and menopause. Watch this episode on YouTube here. Keep reading for the key episode takeaways. Questions and Timestamps: 00:34 The importance of talking about menopause and MS. 01:33 What is menopause? 04:48 What do we know about the effect of menopause on MS? 07:12 What are the symptoms somebody may experience with menopause, that a gynaecologist can help with? 08:47 What is hormone replacement therapy (HRT)? 10:17 Is HRT safe to take with disease-modifying therapies for MS? 12:31 Can blood tests diagnose menopause? 15:02 Is HRT safe for someone who has a family history of breast cancer? 16:33 Does HRT cause people to put on weight? 19:01 Should someone start HRT because they have MS? 21:58 Will supplements or dietary changes help menopause symptoms? 23:14 What about this concept of bioidentical HRT? 24:19 Do you think somebody with MS would benefit from testosterone patches? 26:40 What's the latest research we know about the impact on hormones and menopause treatment, and the outcomes? 28:15 Are hot flushes and heat sensitivity a concern for people with MS? 29:49 What is the Mirena coil and how that may be a part of HRT? 32:23 What are the side effects of progestogen? 32:55 Does early menopause (before 40) affect the rate of progression of someone's MS, either for the better or for worse? 39:26 Topical oestrogen and bladder symptoms Selected Key Takeaways: There is a lot of overlap between MS symptoms and menopause symptoms.6:42 Dr Kate Petheram: “Because of the overlap in symptoms. There are perhaps elements which are so relevant to menopause, which we can perhaps talk about as well in terms of symptoms such as hot flushes and heat intolerance, which again may exacerbate symptoms of MS. So, there may not be a biological difference, but the symptoms of menopause and perimenopause may influence and make worse MS symptoms, which is why I believe it's so important to recognise and point women in the right direction to get the right help." There is no evidence that Hormone Replacement Therapy (HRT) causes cancer.15:19 Dr Siobhan Kirk: “There is no evidence that HRT causes breast cancer. But if you're taking extra hormones, and you've got abnormal cells, then the extra hormones can promote the growth of the abnormal cells. There's no increased risk of breast cancer with use of HRT under the age of 50, for earlier menopause, because you're just replacing what the uterus should be producing.” There is a lot of research taking place around the world on different aspects of living with MS including menopause. 34:12 Dr Jonathan White: “It is reassuring [for] someone living with MS to know that there is just a colossal amount of research going on around the world on all sorts of aspects of living with MS. I feel like reproductive health and women's health is getting to that place slowly. There's a really big push, I can see that in the research community and I'm glad to hear that menopause and post-reproductive health is getting it too.” Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips. More info and links: Watch the YouTube video Find out more about Women’s Health Concern Visit The British Menopause Society Read more about menopause and MS here New to Overcoming MS? Visit our introductory page  Connect with others following Overcoming MS on the Live Well Hub Visit the Overcoming MS website Follow us on social media: Facebook Instagram YouTube Pinterest Don’t miss out:  Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS here. If you like Living Well with MS, please leave a 5-star review. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org. Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here. Bios: Dr Siobhan Kirk’s Bio:Dr Siobhan Kirk is an Associate Specialist in Gynaecology and Clinical Lead for Sexual & Reproductive Health in Belfast HSC Trust.Siobhan’s careerShe is a Fellow of both the Royal College of Obstetricians & Gynaecologists and the Faculty of Sexual & Reproductive Healthcare. She is a British Menopause Society accredited menopause specialist and trainer, based in the menopause clinic in the Mater Hospital, Belfast. She is passionate about all aspects of women’s health, is on NI RCOG and FSRH committees, and is involved in undergraduate and postgraduate teaching. Dr Kate Petheram’s Bio: Dr Kate Petheram is a Consultant Neurologist in Sunderland where she is currently MS lead. Kate’s career backgroundKate studied medicine in Bristol and stayed in the southwest to do her medical training in Bristol and Exeter moving to London to do Neurology jobs at St Georges and The Royal Free. She made the move to the North East to undertake Neurology specialist training. She is a local PI for a number of observational studies. She is a member of the ABN quality committee and one of the medical advisors for the MS Society. She has recently been appointed as training programme director for the North East. Dr Jonathan White’s Bio: Jonathan’s Career: Dr Jonathan White went to the University of Glasgow Medical School, graduating in 2008 (MBChB). He completed a further five years of training in Obstetrics and Gynecology and is a member of the Royal College of Obstetricians & Gynecologists (MRCOG). He works at the Causeway Hospital, Coleraine and has a special interest in early pregnancy and recurrent pregnancy loss. In April 2022, Jonathan was awarded “Doctor of the Year” at the inaugural Northern Ireland Health and Social Care Awards. He contributed to the ‘Overcoming Multiple Sclerosis Handbook: Roadmap to Good Health’ by writing the chapter about medication. Overcoming MS and personal life: Jonathan was diagnosed with RRMS in October 2015 and has been following the Overcoming MS Program ever since. Dr White assists Overcoming MS as a medical advisor and event facilitator. He lives on the North Coast of Northern Ireland, is married to Jenny and father to Angus and Struan. His interests include the great outdoors, cycling and running (reluctantly), reading, rugby, film, and spending time with his family.

The Mind-Body connection with filmmaker Shannon Harvey | S5E23

Welcome to Living Well with MS, where we are pleased to welcome Shannon Harvey as our guest! Shannon is an Australian journalist and filmmaker specialising in wellness, mental health, and optimising wellbeing for those with chronic conditions. Watch this episode on YouTube here. Keep reading for the key episode takeaways and Shannon’s bio. Questions and Timestamps: 03:17 Can you tell us about your film ‘The Connection: Mind Your Body’? 05:22 In your film ‘The Connection’ you interview some of the top scholars on mindfulness and the mind-body connection including Jon Kabat-Zinn and Dr. Herbert Benson. Can you tell us a bit about their work and what you learned from them? 08:05 You mentioned that for your project ‘My Year of Living Mindfully’ (both a film and book) you tried out the science on yourself. How did that go? 10:01 Is there a big difference between doing mindfulness rigorously every day and doing it three or four times a week? 11:21 You've also written a book, ‘The Whole Health Life’, and have interviewed dozens of scientists and patients about living a healthy life with an autoimmune disease. So, what are the takeaways from writing that? 12:55 You count Professor George Jelinek as a personal hero of yours. Could you tell us about what it was like to meet George? 15:44 Could you tell us about your latest project called ‘What if mental illness was preventable’? 18:38 How can listeners find out more about your work and watch your films? Key Takeaways: Making lifelong changes is hard but worth it. 12:19 “‘The Whole Health Life’ is broken up into very practical things that the Overcoming MS community is already [doing]. Things like making sure I regularly exercise, get enough sleep, have meaningful connections with the people that I love, and [how to] nurture those relationships. Then, [it] talks about the fact that making these lifelong changes is really, really hard. The book is also about how we can apply the science of behaviour change to actually make [these] changes [so] that we can actually stick to [them].” Professor George Jelinek shows that people can live well with chronic conditions. 13:04 “I met George (Jelinek) when I was first shooting ‘The Connection’. It was very much the beginning of my understanding of the many things that we can do for ourselves in order to live well with a chronic illness. He blew me away the first time I met him, because he was really well, despite everything. Despite his family history, despite his prognosis, he was just so well, and meeting him was quite inspirational because I thought to myself, ‘well, if, if he can do it, then he's like a living case study for me to show that I can do it, too.’” Shannon’s next project asks, “What if mental illness was preventable?”   16:53 “While I was making ‘My Year of Living Mindfully’, I learned that so much of mental illness actually begins before the age of 20 or 22, I think it is. If you develop a mental illness at a young age, you are significantly more likely to develop it again later in life. If you've developed it a second time, it greatly increases your chances of developing it a third time. So, I'm really personally interested in this idea of prevention.” Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips. More info and links: Find out more about Shannon’s work Find out more about ‘The Connection’ Find out more about ‘My Year of Living Mindfully’ Jon Kabat-Zinn and Mindfulness-Based Stress Reduction Find out more about Dr. Herbert Benson Read about George Jelinek’s personal story Listen to S5E13 Meditation tips with Professor Craig Hassed Visit the Overcoming MS Mental Health Hub New to Overcoming MS? Visit our introductory page  Connect with others following Overcoming MS on the Live Well Hub Visit the Overcoming MS website Follow us on social media: Facebook Instagram YouTube Pinterest Don’t miss out:  Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org. Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. Support us:  If you enjoy this podcast and want to support the ongoing work of Overcoming MS, we would really appreciate it if you could leave a donation here. Every donation, however small, helps us to share the podcast with more people on how to live well with MS. Shannon’s bio: Shannon Harvey is the multi-award-winning director of two internationally acclaimed documentaries, The Connection: Mind Your Body and My Year of Living Mindfully. She’s currently working on a new film project while balancing her life as the mother of two adventurous boys. Shannon’s career background Shannon was the recipient of the National Press Club of Australia’s “Health Journalist of The Year” award for her first book, The Whole Health Life, which is about finding good health after being diagnosed with an autoimmune disease. Shannon has worked as a news and current affairs journalist for leading news organisations such as ABC, Nine Network and Fairfax and her latest book, My Year of Living Mindfully is published by Hachette.

Webinar highlights: Women’s Heath with Dr. Jonathan White and Professor Helen Rees Leahy | S5E22

In this episode, we are sharing the highlights from our webinar 'Women’s Health' with Dr. Jonathan White and Professor Helen Reese Leahy. Dr. Jonathan White is an Obstetrician and Gynecologist, and the Overcoming MS Medical Advisor. Helen lives with primary progressive MS and follows the Overcoming MS Program. They discuss how MS impacts women’s health and how the Overcoming MS Program can best support women’s health. This webinar was recorded as part of our Finding Hope with Overcoming MS webinar series. You can watch the whole webinar here or the podcast highlights on YouTube here. Keep reading for the key episode takeaways and bio information. Topics and Timestamps 00:56 The history of MS research with women (Helen) 08:15 Reproductive health and MS (Jonathan) 26:14 The Overcoming MS Program supports every aspect of women’s health (Helen) 34:51 Hormone replacement therapy (HRT) (Jonathan) 47:41 Bladder issues with MS and menopause (Jonathan and Helen) Selected Key Takeaways More research is needed to understand menopause’s effect on MS "The age group with the highest number of people with MS, both men and women, is now 55-64. So, if you think about [that] within the general MS population, that's obviously a very large number of women who are either menopausal or postmenopausal. But very, very few women over 50 are recruited for MS research trials. So, the effects of menopause on the lives and health of women with MS, in general, but also our response to DMTs, are very under-researched.” Inflammation can worsen as we age "‘Inflammageing’ is a fascinating term, which essentially [means] the inflamed pro-inflammatory state that people exhibit as they get older. A lot of the conditions we develop at an older age are actually due to increases in inflammation. Cardiovascular disease would be a prime example of that. We think that ‘Inflammageing’ certainly has a role in this mixed bag of MS and menopause, and of course, the obvious one to look at will be oestrogen deficiency. Is HRT beneficial if you have MS? There is some evidence to say that it is. But again, none of those studies are prospective or randomised control studies. Generally speaking, it's not recommended to take HRT just by virtue of having MS to protect yourself. But there's certainly no reason not to [take it] because you have MS [and menopause] and in fact, it may be beneficial. So, if you are struggling with the hot flushes, the night sweats or your urinary symptoms have suddenly got much worse, you're suffering from vaginal dryness, then this is definitely a conversation that you should be having." Bladder issues are common with MS and menopause "With MS in both males and females, we think up to between 50% and 70% of people will have bladder dysfunction due to MS. That usually affects the nerves supplying the muscle, the detrusor muscle in the bladder wall, and makes it very irritable, so it tends to be an overactive or urge problem with MS. That's also very common post-menopause, and the mechanism isn't entirely the same, but it does share a bit, and part of it is certainly to do with oestrogen deficiency." More Info and Links: Watch the original webinar Listen to Dr. Jonathan White’s podcast episodes on Season 1 Episode 2, Season 2 Episode 19, Season 3 Episode 32, the 100th Episode, and Season 4 Episode 64 Read the paper‘Effects of Menopause in Women with Multiple Sclerosis: An Evidence-Based Review’ Read ‘Does menopause influence the course of MS?’ Visit the Royal College of Obstetricians, Gynecologists’ women's health hub The British Menopause Society The Women’s Health Concern Listen to Dr. Rachael Hunter discuss the 3Ps on S4E67 Listen to Helen’s podcast episode about Primary Progressive MS New to Overcoming MS? Visit our introductory page Connect with others following Overcoming MS on the Live Well Hub Visit the Overcoming MS website Follow us on social media: Facebook https://www.facebook.com/OvercomingMS/ Instagram https://www.instagram.com/overcomingms/ YouTube https://www.youtube.com/overcomingms Pinterest https://www.pinterest.com/overcomingms/ Website https://overcomingms.org/ Don’t miss out:  Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org. Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. Support us:  If you enjoy this podcast and want to support the ongoing work of Overcoming MS, we would really appreciate it if you could leave a donation here. Every donation, however small, helps us to share the podcast with more people on how to live well with MS. Dr. Jonathan White’s Bio Career: Jonathan went to the University of Glasgow Medical School, graduating in 2008 (MBChB). He completed a further five years of training in Obstetrics and Gynecology and is a member of the Royal College of Obstetricians & Gynecologists (MRCOG). He works at the Causeway Hospital, Coleraine and has a special interest in early pregnancy and recurrent pregnancy loss. In April 2022, Jonathan was awarded “Doctor of the Year” at the inaugural Northern Ireland Health and Social Care Awards. He contributed to the ‘Overcoming Multiple Sclerosis Handbook: Roadmap to Good Health’, by writing the chapter about medication. Overcoming MS and personal life: Jonathan was diagnosed with RRMS in October 2015 and has been following the Overcoming MS Program ever since.  Dr. White assists Overcoming MS as a medical advisor and event facilitator. He lives on the North Coast of Northern Ireland, is married to Jenny and father to Angus and Struan. His interests include the great outdoors, cycling and running (reluctantly), reading, rugby, film and spending time with his family. Professor Helen Rees Leahy’s bio: MS and Overcoming MS Helen was diagnosed with Primary Progressive MS in 1997 when she was 37 years old. Being ineligible for any Disease Modifying Treatment (DMT) within the UK National Health Service, she began to explore holistic approaches to managing her condition. She discovered Overcoming MS in 2008 and has followed the Program ever since. She was previously a Trustee for Overcoming MS. Personal life and career Helen lives in Conwy, a small, medieval town in North Wales. In 2017, she took medical retirement from the University of Manchester where she was a Professor in the Department of Art History and Cultural Practice. As an Emerita Professor, Helen continues to research and teach doctoral students. She also spends time hand-weaving and learning Welsh, the language of her ancestors.

Phil King: An MS nurse with Multiple Sclerosis | S5E21

Welcome to Living Well with MS, where we are delighted to welcome MS Nurse, Phil King, as our guest! Phil offers a great perspective: as a Multiple Sclerosis nurse who also has MS himself, he has been following the Overcoming MS Program for more than a decade.  Watch this episode on YouTube here. Keep reading for the key episode takeaways and Phil’s bio.  Questions and Timestamps 00:54 Can you tell us about your personal MS journey and professional MS journey? 05:35 Did you become an MS nurse before or after your diagnosis? 11:36 Do you recommend Overcoming MS to your patients? 17:09 Would you say that your patients are typically keen to add in lifestyle modifications? 20:41 How does smoking affect MS?  25:06 Medication is a pillar in the Overcoming MS Program. 26:07 How does having MS yourself help you in your role as an MS nurse? 29:43 What are your tips for us as patients for interacting with nurses and neurologists? 38:48 Meditation can take on many different forms.  40:15 If you could give some advice to someone recently diagnosed or just starting the Overcoming MS program, what would it be? Selected Key Takeaways Be honest with your nurse about your symptoms, even if you think they are embarrassing. 32:19 “I'll be honest, I've had bladder issues before. If I'm talking to a patient and they say, ‘I'm having to get up two or three times a night, and it's embarrassing. Sometimes I don’t make it to the toilet in time. I don't really want to speak to a nurse about it, and I don't want to go into the bladder and bowel clinic about it,’ I say, ‘Well, why not? I've been [to the clinic].’” Work with your healthcare team to manage your condition for life. 37:25 “[MS is] not a condition that is going to end your life very quickly. This is a condition for life. We're now seeing that people with MS have a near-to-normal lifespan, [just like] any other person. So, it's about managing your condition, [and] it's about being honest with your nurse. If your nurse or neurologist asks you to keep a diary [of] how often these symptoms occur, it's really helpful to us because we want you to live the best life that you possibly can.” You can live a very good life with MS. 43:17 "MS is frightening when you're newly diagnosed, but it does settle down, and there is hope. There is a life to be lived with MS. You can live a very good life. I would say that I look at MS as a gift, which I never thought I'd say. It’s shown me so many different things, different ways of living, [and] different friend groups. If I was told tomorrow, 'Phil, we've made a big mistake. You haven't got MS,' I wouldn't change my lifestyle at all." Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips. More info and links: Read The Overcoming Multiple Sclerosis Handbook Are you a Healthcare Professional? Visit our Healthcare Professionals webpage New to Overcoming MS? Visit our introductory page Connect with others following Overcoming MS on the Live Well Hub Visit the Overcoming MS website Follow us on social media: Facebook Instagram Twitter YouTube Pinterest Don’t miss out:  Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org. Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. Support us:  If you enjoy this podcast and want to support the ongoing work of Overcoming MS, we would really appreciate it if you could leave a donation here. Every donation, however small, helps us to share the podcast with more people on how to live well with MS. Phil’s bio:Phil’s journey with Overcoming MS and fitness Phil King has been following the Overcoming MS program for 11 years. He discovered Overcoming MS through Rebecca Hoover’s site An Intelligent Person’s Guide to Beating MS while he was scouring the internet for help just before diagnosis.  Phil still runs, cycles and lift weights (he admits, “I’ll never be Mr. Muscle but I’m working on it!”)  Phil’s MS and career as an MS Nurse Phil has only had 1 relapse since diagnosis and follows the Overcoming MS program strictly. He works as a multiple sclerosis nurse for England’s National Health Service and contributed his story to the Overcoming Multiple Sclerosis Handbook.