Podcasts about primary progressive ms

Physician Assistant and prior C&P examiner Leah Bucholz discusses What to Expect in a TMJ Veterans Disability C&P Exam.Leah discusses Multiple Sclerosis (MS) with Veterans Affairs (VA) disability. She explains that MS, an autoimmune disease affecting the central nervous system, can be linked to service-related factors, including exposure or symptoms that began during active duty. MS has various types, including Clinically Isolated Syndrome, Relapsing-Remitting MS, Primary Progressive MS, and Secondary Progressive MS, each with distinct characteristics and progression patterns. For VA disability, a current MS diagnosis, an in-service event, and a nexus linking the event to MS are essential. Leah highlights the VA's presumptive criteria, which considers MS diagnosed within seven years of service exit as service-connected if it's compensable to a 10% degree. She suggests that medical records can help establish a connection even if diagnosed later.

At 40 I thought I might be too old. I had spent my youth raising kids and surviving a toxic marriage. But one of my Aunties had been telling me for years, “Life starts at 40”.  I took her at her word and midlife became the start of the great life I have today.   Today's guest is on a mission to make sure that all women in Midlife live their best life.    Alison Jacobson is known as the Midlife Maverick. She's a testament to resilience, having triumphed over grief and obstacles including the death of her baby to SIDS, financial devastation after a divorce and managing the role of caregiver for her son with Intellectual Disabilities and her husband with Primary Progressive MS.   Her journey includes successfully selling her first business at 28 and going on to building two more successful businesses. Last year, she ran the NYC Marathon at 57, proving it's never too late for transformation. She also launched her book Daily Inspiration for Midlife Women: A Guide to Peace, Joy, Confidence, and Abundance. As a serial entrepreneur, successful coach, and speaker, she empowers women in midlife to release self-doubt, shift their mindset and authentically build successful businesses. Alison and I dish on:    - What women experience in midlife and why they feel that  - How to define happiness, for you  - 4 Broad steps to get started with creating your happy life  - Why women find so many obstacles on their way to success   - What causes women to stay stuck despite having it all   Purchase your copy of Love Based Feminine Marketing: The Art of Growing a 6-Figure Business Without Hustle, Grind, or Force, (https://tinyurl.com/ydmzb6qz) TODAY!!! Subscribe now so you'll never miss an episode and leave us a review. It really helps us know which content is most important to you. Join our Feminine Business Magic Facebook Group (https://tinyurl.com/ygdkw7ce)  with your host, Julie Foucht. This is a community of women dedicated to connecting, supporting, and celebrating each other in growing businesses that honor their Divine Feminine while filling their bank accounts abundantly.   Resources mentioned: Purchase Love-Based Feminine Marketing (https://tinyurl.com/ydmzb6qz)  Alison Jacobson's Free Gift:  Get access to Alison Jacobson's Free resources at https://alison-jacobson.com/art/    Career Transition Audit - https://alison-jacobson.com/free-resources/strengths-and-talents-questionnaire-sign-up/    Instagram: https://www.instagram.com/_alisonjacobson/    Midlife Mavericks - Living Life Happy, Healthy, Sexy & Strong: https://podcasts.apple.com/us/podcast/midlife-mavericks-living-life-happy-healthy-sexy-strong/id1562524104  **Contact Alison Jacobson via Facebook or https://alison-jacobson.com/**     **Connect with Julie Foucht via Facebook (https://tinyurl.com/yeb82uuj) or email at https://juliefoucht.com/**  

Ep 93 How to Decide to Persevere and Overcome with Alison Jacobson Have you met someone who is taking on All.The.Things and you think, “Oh, I could never do that? Well, Alison Jacobsbon, author or Shut the Fear Up and  Daily Inspirations for Midlife Women: Peace Joy, Confidence and Abndance… In this episode: Overcome life-changing situations include loss of a son to SIDS, bankruptcy after a divorce, and being a full time caregiver for her 2nd husband with Multiple Sclerosis, 2nd child with Intellectual disabilities and her mother - all in the same house. How you can personally and professionally successfully navigate your next steps. Hear 3 Lessons Learned while training for the NYC Marathon at 57 that can help women in Midlife.  Identify the 3 barriers that hold women back from pursuing the dream How Boundaries can Be Loving and who and who NOT to share your big dreams Develop the ‘Quiet Confidence' that knows “You are Awesome” and releases the people pleaser About Alison Jacobson is known as the Midlife Maverick. She's a testament to resilience, having triumphed over grief and obstacles including the death of her baby to SIDS, financial devastation after a divorce and managing the role of caregiver for her son with Intellectual Disabilities and her husband with Primary Progressive MS. Her journey includes successfully starting and selling a business at 28, conquering the NYC Marathon at 57, proving it's never too late for transformation. As a serial entrepreneur, successful coach, and speaker, she empowers women in midlife to rediscover their goals, rebuild confidence, amplify joy, and unlock the abundance they deserve. IG @_alisonjacobson https://www.instagram.com/_alisonjacobson/ LinkedIn - ihttps://www.linkedin.com/in/alison-jacobson-midlifemaverick/  IG - @AlisonJacobson Website https://alison-jacobson.com/ SIDS Alliance https://www.Firstcandle.org  

Here's what to expect on the podcast:What are the four C's that can help you overcome self-doubt and impostor syndrome to foster the growth of your business?How can embracing vulnerability be a strength for women in various aspects of their lives?What advice or guidance can be offered to midlife women searching for their true purpose?How can societal expectations and roles impact a woman's sense of identity?And much more! About Alison:Alison Jacobson is known as the Midlife Maverick. She's a testament to resilience, having triumphed over grief and obstacles, including the death of her baby to SIDS, financial devastation after a divorce, and managing the role of caregiver for her son with Intellectual Disabilities and her husband with Primary Progressive MS. Her journey includes successfully starting and selling a business at 28, conquering the NYC Marathon at 57, proving it's never too late for transformation. As a serial entrepreneur, successful coach, and speaker, she empowers women in midlife to rediscover their goals, rebuild confidence, amplify joy, and unlock the abundance they deserve. Connect with Alison Jacobson!Website: https://alison-jacobson.com/Facebook: https://www.facebook.com/AlisonJacobsonMidlifeMaven/Instagram: https://www.instagram.com/_alisonjacobson/First Candle: https://firstcandle.org/bereavement-support-for-a-sids-loss-is-critical/Mini-Course: Seven Days to Unshakable Self-Confidence! https://alisonjacobson.samcart.com/products/seven-days-unshakable-self-confidence-beliefsFreebie: Five Steps to Release Fear and Live Boldly. https://alison-jacobson.com/free-resources/five-steps-to-release-fear-and-live-boldly/Check out Alison Jacobson's book, Daily Inspirations for Midlife Women: A Guide to Peace, Joy, Confidence, and Abundance, on Amazon! https://tinyurl.com/59474rb4 Connect with Kamie Lehmann!Website: https://www.kamielehmann.com/Facebook: https://www.facebook.com/kamie.lehmann.1Instagram: https://www.instagram.com/shesinvinciblepodcast/LinkedIn: https://www.linkedin.com/in/kamie-lehmann-04683473National Domestic Violence Hotline: https://www.thehotline.org/Get your Podcast on IMDB: https://imdb.failureguy.com/submitpodcastkamieLearn more about how to minimize the emotional side effects of cancer: https://adventurefound.org/

On todays episode, Dr. Bob talks to us about his research (their newest findings discovered a potential treatment for primary-progressive MS)., what it means for people with Primary progressive MS, and things you can do NOW to set yourself up for even more benefit when future therapies arrive. Bob Axtell is an Associate Member of the Arthritis & Clinical Immunology Research Program at the Oklahoma Medical Research Foundation My bachelor's and master's degrees are from Idaho State University, and my Ph.D. is from the University of Alabama-Birmingham. I conducted postdoctoral research at Stanford University for six years before opening my own lab at OMRF in 2013. In my lab, we use animal models and patient samples from OMRF's MS Center of Excellence to understand why MS behaves differently from other autoimmune diseases and why some MS patients do not respond well to standard therapy. By studying human disease specimens and animal models, we have great potential to identify new therapeutic targets and develop prognostic tests that will bring clinical care of multiple sclerosis into the forefront of personalized medicine. Connect with Dr. Bob & the Oklahoma Medical Research Foundation: Website: https://omrf.org/ Twitter: https://twitter.com/OMRF Additional Resources: https://www.doctorgretchenhawley.com/insider Reach out to Me: hello@doctorgretchenhawley.com Website: www.MSingLink.com Social: ★ Facebook: https://www.facebook.com/groups/mswellness ★ Instagram: https://www.instagram.com/doctor.gretchen ★ YouTube: https://www.youtube.com/c/doctorgretchenhawley?sub_confirmation=1 → Game Changers Course: https://www.doctorgretchenhawley.com/GameChangersCourse → Total Core Program: https://www.doctorgretchenhawley.com/TotalCoreProgram → The MSing Link: https://www.doctorgretchenhawley.com/TheMSingLink

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.

In this episode, we are sharing the highlights from our webinar ‘Living Well with Progressive MS' with Dr Phil Startin and Professor Helen Reese Leahy. Both Phil and Helen have progressive MS and follow the Overcoming MS Program. They discuss what progressive MS is and how the Overcoming MS Program can benefit people with progressive MS. This webinar was recorded in July 2021 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. Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. And if you're new to Overcoming MS, visit our introductory page to find out more about how we support people with MS. Selected Key Takeaways Overcoming MS is for every type of MS Helen Rees Leahy: “Overcoming MS is really determined to be an inclusive space in which everybody's experience of MS is acknowledged and honoured. So, though we [people with progressive MS] may be small in number, our voice is growing, and we're very much being heard within the Overcoming MS conversation.” Exercise is still important with progressive MS but be gentle and kind with yourself Phil Startin: “Be kind to yourself, try not to judge [and] compare what you can do now to what you used to be able to do. I've certainly spoken to people who refuse to exercise saying exercising reminds them of what they now can't do and that's really upsetting. We still need goals but hold them more lightly [and] more gently.” Think of the Overcoming MS Program as a toolkit rather than a set of rules Helen Reese Leahy: “I started following the Overcoming MS Program in the 2000s. It's become a framework for my daily life. I've never been eligible for any disease-modifying therapy, so in a sense, Overcoming MS is my health care programme. I feel very empowered by following the Program. I am taking responsibility and managing my own health to the best of my ability. I always regard Overcoming MS not as a book of rules, but as a kind of toolkit and to be honest, I really enjoy following the Program.” More info and helpful links: Watch the original webinar here Try yoga with Overcoming MS facilitator Veronique Gauthier-Simmons here Read more about Progressive MS Join the Progressive MS Circle New to Overcoming MS? Visit our introductory page 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 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 here. Dr. Phil Startin's bio: Career and Overcoming MS: After a DPhil in Quantum Physics, Phil left his academic roots for a more peripatetic career in management consulting, initially with Price Waterhouse. After years of travelling around the world for both work and pleasure, including a two-year assignment in Geneva, he was diagnosed with Primary Progressive MS (PPMS) in 2007.   Phil discovered Overcoming MS in 2011, and coupled with his earlier discovery of mindfulness meditation, it awakened a whole new area in his life. With training and supervision from Bangor University, he now teaches an eight-week mindfulness-based stress reduction (MBSR) course to people with MS and to the general community on a pro-bono basis. He is also a trustee for MS-UK.   Personal life: Phil lives in Arrochar, Scotland with his American wife, Cristina, whom he met over a weekend at the Jazz Fest in New Orleans. Phil's completely convinced that the Overcoming MS Program and mindfulness have positively affected the trajectory of his condition 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.

Listen to this conversation with Alison Jacobson, an inspirational coach and motivational speaker for midlife women. She has overcome some of life's greatest challenges including the death of her infant son, a contentious divorce that left her broke, her second son's intellectual disabilities, and the rapid physical decline of her second husband due to Primary Progressive MS. Despite all of this, Alison has found the courage to pursue her dream of helping other women in midlife reclaim their dreams and live a great life. She practices what she preaches, too.  She recently completed the New York City Marathon for the first time, even though she wasn't a runner before taking on the challenge. Hear her incredible story of resilience and determination and find out how you too can live a life of passion and purpose.

Content warning: this episode includes a discussion about Lydia's personal experiences of Primary Progressive MS and her plans with regards to Death with Dignity, aka Suicide.Lydia Emily Archibald is an artist to her core. She was born in Chicago to globe-trotting activist parents, and this laid the foundation for her socially-conscious and politically-motivated artworks, including the creation of large-scale murals. Lydia Emily's work has been featured at gallery shows in Milan, Berlin, Los Angeles, New York, Miami, Washington DC, and San Francisco. After battling cancer, Lydia was diagnosed with Multiple Sclerosis in 2012. She later became a spokesperson for the MS Society, sharing the story of her diagnosis and life with MS and her message of hope for others with the disease.Lydia Emily is the subject of the recent documentary The Art of Rebellion, a feature-length film from Bluprint Films directed by Libby Spears. I think she is an amazing person, living an amazing life, and I'm sure you'll agree.Topics covered in this episode include:How Lydia received her MS diagnosis only TWO YEARS after battling cancer!How she started painting and the different materials she has used instead of canvasesThe political and socially conscious art that Lydia makes, the adaptations that she has made, and the team that supports her in the creation of her large-scale muralsThe symptoms that Lydia and Kathy share, and why Lydia thinks the US Healthcare system is trying to wipe out or "cleanse" the chronically illThe plans that Lydia has in place for her death with dignity, aka suicideInformation about the full-length feature documentary about Lydia, The Art of RebellionFull show notes and resources at https://fumsnow.com/fums114/ See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Dr. Folake Taylor is an internal medicine physician by training and practiced in the outpatient landscape in this capacity for 15 years, and in her last 7 years in post, she began to increasingly infuse holistic wellness into her practice. Now she is moving into the holistic wellness space as the MS Educator, based on her experience and success in living with Primary Progressive MS.That's right - she's an MD who has Primary Progressive MS.We have a lot to talk about, including her diagnostic journey and exploration of holistic wellness (which actually predates her diagnosis), the cognitive issues which led her to stop working, biological dentistry, her belief that conventional western medicine is sick-care not healthcare, and so much more! Links and resources:Visit Folake Taylor, MD Connect with Dr. Taylor on Twitter, Facebook, or Instagram Visit The International Academy of Oral Medicine and Toxicology (IAOMT) You can find Kathy Chester atdisruptfitnessgym@gmail.com moveitorloseit109@gmail.com Instagram - @msmoveitorloseit @disruptfitnessgymHere are some additional products that help Kathy deal with beating the Heat and Migraines.  Take advantage of the coupon code.Koldtec - Cool Head WrapKOLD10To save $10 off every item in-store2 items = $20 savings3 items = $30 savingshttps://www.koldtec.com/ Cold bean bag Releafpack. 15% discount use code Disrupt15https://www.releafpack.com 

Fatigue is one of the most common symptoms of MS. It just gets in the way of fully engaging in life, making fatigue one of the most bothersome symptoms of MS. And because MS fatigue is one of the main causes of early withdrawal from the workforce, fatigue is an MS symptom that can impose a hefty financial penalty on a household. Joining me to talk about managing and even reducing MS fatigue is Dr. Elizabeth Gromisch, a neuropsychologist at the Mandell Center for Multiple Sclerosis in Hartford, Connecticut. We'll also share the results of a UCSF study that show how artificial intelligence may be able to predict MS in an individual years before they experience any typical MS symptoms. We'll tell you about two different experimental treatments for progressive MS that are showing some early promise. We'll give you the details of how you can join a virtual support group with a focus on using positive psychology for people living with MS. And we'll give you a reminder that MS Got Talent is being live-streamed this Saturday....and Jon's performing magic!  We have a lot to talk about! Are you ready for RealTalk MS??! Did you catch last week's episode about EBV & MS?  :22 Wait....Jon does magic???!   2:08 Study shows AI may predict MS years before it can be diagnosed  3:43 Study shows Hydroxychloroquine slows disability progression in primary progressive MS  7:28 Second patient receives Foralumab as treatment for secondary progressive MS  9:13 How you can join a virtual support group that focuses on using positive psychology for people living with MS   11:08 Dr. Elizabeth Gromisch discusses strategies for managing and even reducing MS fatigue  13:04 Share this episode  27:42 MS Got Talent is live streaming this Saturday   28:03 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email:  https://realtalkms.com/230 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance National MS Society Third COVID-19 Vaccine Dose Guidance for People Living with MS https://www.nationalmssociety.org/About-the-Society/News/Additional-COVID-19-Vaccine-Dose-(Booster)-and-MS STUDY: Embedding Electronic Health Records Onto a Knowledge Network Recognizes Prodromal Features of Multiple Sclerosis and Predicts Diagnosis https://academic.oup.com/jamia/advance-article/doi/10.1093/jamia/ocab270/6463510#323650259 STUDY: Hydroxychloroquine for Primary Progressive MS https://onlinelibrary.wiley.com/doi/10.1002/ana.26239 Positive Psychology Virtual MS Support Group Study Contact Info Email: tanya.barcinas@duke.edu Phone: (919) 638-0889 MS Got Talent LIVE on Jan. 29th at 7PM Eastern/4PM Pacifichttps://mssociety.donordrive.com/participant/msgottalent or https://twitch.tv/mssociety Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 230 Guests: Dr. Elizabeth Gromisch Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy

Kyle's Bio: Kyle Kranich is 31 years old, a full-time student at CSU-Global, and a Primary Progressive MS fighter since 2011. Kyle is always searching for solutions to these health issues, hoping to be a resource to others navigating similar health circumstances Behind the scenes link: https://www.doctorgretchenhawley.com/BehindTheScenes Free 5 Day MS Strength Challenge Link: https://www.doctorgretchenhawley.com/FreeMSStrengthChallenge2 Kyle's IG: @gottakeepgoing_ MS Confidential: unfixedmedia.com/ms-confidential Additional Resources: https://www.doctorgretchenhawley.com/insider Reach out to Me: Gretchen@DoctorGretchenHawley.com Website: www.MSingLink.com Social: ★ Facebook: https://www.facebook.com/groups/mswellness ★ Instagram: https://www.instagram.com/doctor.gretchen ★ YouTube: https://www.youtube.com/c/doctorgretchenhawley?sub_confirmation=1 → Game Changers Course: https://www.doctorgretchenhawley.com/GameChangersCourse → Total Core Program: https://www.doctorgretchenhawley.com/TotalCoreProgram → The MSing Link: https://www.doctorgretchenhawley.com/TheMSingLink

Adam Powell was a self-proclaimed beast until 2019 when he was diagnosed with the most aggressive case of Primary Progressive MS his doctor had ever seen. Over the course of 5 weeks, he lost the ability to walk and drive, which, combined with the onset of the COVID-19 pandemic, led to an intense grieving process.However, with his own unstoppable nature, combined with a healthy dose of FUMS attitude, he has found ways to cope. Through the use of physiotherapy, exercise, yoga, and light therapy, he even carried out a cross-country solo road trip! I think his story and his attitude to living his best life with Multiple Sclerosis are inspiring. Full show notes and resources at https://fumsnow.com/fums097/See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Empowerment is one of the strategic pillars of the Overcoming MS charity, and advocacy is a practical way in which we realize this goal. Living Well with MS is honored to welcome two of Overcoming MS's newest trustees – Prof. Helen Rees Leahy and Alison Marwick – for a special roundtable discussion on how advocacy is put in practice. This episode dives into the mission of advocacy and how we put it in play by developing tools and resources to enable OMSers to have confidence in talking about OMS to family, friends, health care professionals, and others.   Helen's Bio:   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 OMS in 2008 and has followed the program ever since. In 2021, Helen joined the OMS Board of Trustees.   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. Helen has never taken medication for her MS and is committed to living well through active self-care.   Alison's Bio:   Allie is originally from Edinburgh but now lives in Surrey. While living in London in 2004 she had her first MS episode, but it was not until 2011 that she was formally diagnosed. Living in limbo for seven years, she buried her head in the sand and hoped nothing more would happen, but optic neuritis led to a formal diagnosis and the necessity to accept that MS was to be part of her life. Not willing to sit and wait for the next episode, she found Overcoming MS a few months later and has never looked back.   Since finding OMS Allie has supported the organization in many ways, and in 2018 became an ambassador for the OMS Circle in Surrey. Supporting the organization that has given her so much after diagnosis and enables her to live a full life is important to Allie, and why she applied to become an ambassador.   Allie lives with her partner, Neil, and is lucky to be able to work full time as a Salesperson for an IT consultancy. She enjoys spending time in her garden, running (slowly), and is looking forward to returning to Covent Garden Royal Opera House to enjoy the opera in the autumn.   Themes:   What is advocacy? What does it mean for the OMS community? How do we do out it in practice? What is the OMS Advocacy Group? Where can you begin? How do we measure success?   Empowerment begins with OMS listening to and learning from the diverse experiences of our community: we'd love you to help us shape this work. See below for more info on the advocacy section of the OMS website.   Recommended Links:   Check out Overcoming MS's new advocacy page on our website.   Coming up on our next episode:   Only three episodes left in Season 3! Next up: just in time for Giving Tuesday 2021 and starting November 29, meet Nicole Zobrist, the ambassador of the OMS Circle in Portland, Oregon, on Living Well with MS Coffee Break #25, part of our popular ongoing series introducing you to members of OMS's dynamic community from around the globe.   Don't miss out:   Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. Don't be shy – if you like the program, leave a review on Apple Podcasts or wherever you tune into the show.   S3E44 Transcript Empowering Advocacy   Geoff Allix (1s): Welcome to Living Well with MS, the podcast from Overcoming MS for people with multiple sclerosis interested in making healthy lifestyle choices. I'm your host Geoff Allix. Thank you for joining us for this new episode. I hope it makes you feel more informed and inspired about living a full life with MS. Don't forget to check out our show notes for more information and useful links. You can find these on our website at www.overcomingms.org/podcast. If you enjoy the show, please spread the word about us on your social media channels. That's the kind of viral effect we can all smile about. Finally, don't forget to subscribe to the show on your favorite podcast platform so you never miss an episode.   Geoff Allix (44s): Now without further ado on with the show. Today's podcast is different to every other one that we've had so far in that we have two guests, and we're going to discuss advocacy. And joining me today are Alison Marwick and Helen Rees Leahy. And I'm going to get Alison and Helen to introduce themselves. You may be familiar with Helen; she's already been a podcast guest. I believe it's season two, episode 30 off the top of my head. But there's a podcast about PPMS with Helen, but to start off with, would you like to, well, firstly, welcome and could you introduce yourself, Alison or Allie?   Alison Marwick (1m 31s): Thanks, Geoff. Yeah, delighted to be here on this podcast today and talking a bit about advocacy. So, my name's Alison or Allie Marwick, I have relapsing remitting multiple sclerosis, and although I was formally diagnosed 10 years ago in September 2011, I had my first episode in 2004. So, I've been living with the disease for the past 17 years. I'm fortunate in that I found OMS within about a month of diagnosis, which was great because during that period, I was probably depressed having gone going through that grief cycle of being diagnosed and not really knowing what to do, but I was physically well, I was mentally well, but I had this, what I felt was, you know, a hideous disease and that my life was over.   Alison Marwick (2m 36s): So, finding Overcoming MS within a month was hugely empowering and gave me so much hope. And it enabled me to really take steps in my life that I had been afraid to before. I had been told in 2004 that I probably had MS, or it was highly likely, I think they phrased it, but I pretended that it wasn't there. And I just was living in denial and in fear. And what OMS gave me was that ability to not be fearful anymore, to have hope that I was able to manage my life and that it wasn't over. And I could do all the things that I wanted to do by following the program and have great health outcomes.   Alison Marwick (3m 19s): So that's, you know, that's kind of my story in terms of OMS and how I found it. And I, ever since then, I've been passionate in wanting to support the organization, support other people who are following the program or looking at or interested in following the program. So, I've been an ambassador for Surrey, which is where I lived for the last three years, which has been hugely rewarding. And, you know, we've got an active circle here, which has been great fun and, you know, helping and working with others who are following the program.   Geoff Allix (3m 52s): Excellent. So also joining is Helen Rees Leahy as mentioned. So, Helen, could we have a quick intro from you?   Helen Rees Leahy (3m 59s): Hi, Geoff. Hi, Allie. Hi, everybody. Thank you very much, Geoff, for asking both of us to come on to talk about advocacy today. I'm Helen, Helen Rees Leahy. I was diagnosed with primary progressive MS in 1997. So, I've been living with MS now for nearly 25 years. And as I had a diagnosis of primary progressive from the outset, I have had that course of increasing progression of my illness. I discovered OMS a long time ago, actually. I mean, I think it was something like 2008 when Professor George Jelinek published one of his very early books outlining the backbone of the OMS program.   Helen Rees Leahy (4m 46s): And I seized upon that. I have never been eligible for a disease modifying therapy under the UK NHS system. So, I've always been managing my MS through my own actions and agency, and like Allie discovering the Overcoming MS Program was a tremendous support for me and indeed it supported me throughout my time, my life with MS and continues to do so. So, I think I'm very touched by what Allie says about, you know, overcoming fear and anxiety. And that's something I'd like to come back to. I think in the course of this conversation, the importance of the program, not only in enabling us to lead very healthy lives, as healthy as we possibly can with this condition, but also the emotional, the mental, the psychological support that it gives us in terms of becoming less fearful, becoming less anxious about our conditions.   Helen Rees Leahy (5m 51s): And that's very much, I think, at the core of the advocacy initiative, the ways in which we can really realize the goal of empowerment, empowerment for ourselves and for each other as a community of people living with MS, following the OMS program.   Geoff Allix (6m 13s): Can we start out just as a basic, what is advocacy? To start off with. I think a lot of people won't have heard the term too much. So, could we just define advocacy and the types of advocacy as well? Who wants to take this one out?   Helen Rees Leahy (6m 29s): I'll kickoff, but Allie, I know will come in there as well. I mean, that's right. It's perhaps a rather abstract word. We relate it as I was suggesting a second ago, very much to our strategic goal of empowerment within OMS and really what it is, is making the case for the OMS program. So, if you think about it this way, I think as an organization, we're very good with information to go into the website. There's a massive amount of information about the program, how to implement it. You know, your questions are answered there, but we know that living with MS is challenging and convincing other people of the benefits of following a program like Overcoming MS.   Helen Rees Leahy (7m 16s): It can also be quite challenging. Maybe those, it could be family, friends, it could be your healthcare professional. They don't always understand the program, they don't always see the benefits that we ourselves perceive from it. So, it's making a persuasive argument and it's finding the words and the confidence to make the case for following the program. Sometimes in perhaps what might be quite difficult or challenging situations, you know, where you need to be persuasive. It's beyond information. It's a process of a persuasion. And I say, we can do it for ourselves. We can also do it for each other as well.   Geoff Allix (7m 58s): And Allie, do you have anything to add to that?   Alison Marwick (7m 60s): Yeah, I would agree with that. I think, you know, there are two keywords there that Helen references: empower and confidence. You know, giving people the tools and the techniques and the confidence to be able to talk about their own diagnosis, talk about their own choice to follow the program and the benefits that that's shown. We know from the community engagement survey data that was, you know, we're currently trawling through as an organization, that a lot of people struggle with talking to healthcare providers, talking to their friends and family, but having your friends and family on side is a huge support network.   Alison Marwick (8m 43s): It's really important. And we knew that you, having the confidence and the ability to be able to articulate what it is that you're doing and why, and not have to be defensive and constantly, you know, people going, oh, go on just to have a wee bit cheese or whatever. And so, it's about, we want to enable people to have that confidence, to have that ability, to have those conversations in any environment, whether it's friends, families, healthcare professionals, work, those sorts of areas that we'd recognize, but we maybe need to provide a bit, a few more tools, techniques, and support in order to be able to do that.   Geoff Allix (9m 20s): Absolutely. I think I bet anyone who's got MS and following OMS, I think will be familiar with this. I think, I consider myself very lucky in that my neurologist is very supportive, but I've certainly had many stories of-- probably isn't fair to say, old school neurologists, maybe more traditional, if you like, who really are very much of the opinion, you take the medication and you live life. Literally, I think the phrase did come up like, you know, you've got MS, you don't want to make things any worse and just enjoy life while you can.   Geoff Allix (10m 1s): And it was some really cutting remark like this I've heard, but actually when you look at some of the top neurologists, you know, some really leading neurologists, they are almost entirely of the opinion that lifestyle is a factor and living a healthy life will have an effect on your MS prognosis. So there is definitely, if you've got an up-to-date, if you like, neurologist, they seem to be very pro the OMS approach, but yeah, there are still some more traditionalist and equally person to person as well, because I think all of us will have come across someone who I think you said, why not just have a little bit of cheese, and that is absolutely the case with some people.   Geoff Allix (10m 49s): Again, I feel very fortunate. My family and friends are generally very supportive, but it still happened, you know, a little bit won't hurt sort of argument. So how is advocacy particularly important to the OMS community then? And to the broader MS Community?   Helen Rees Leahy (11m 14s): For me, that's all about individual and collective agency. So, when any of us has a diagnosis of a condition like MS, as Allie was saying, you know, there can be very devastating concerns. And, you know, people of course react in very different ways, but it's, you know, it's a profound change in anybody's life. And in fact, it can be a very traumatic period for people, but what the OMS program does not only, you know, is provide a toolkit to enable us to lead a healthy life.   Helen Rees Leahy (11m 56s): It's also a means of covering our own personal agency of taking control, of feeding that something that we can do and in time, you know, perceiving the tangible benefits of following the program. So, for me, it's that process of taking control, which I think is so incredibly powerful. That is why we believe, of course, the Overcoming MS Program is so valuable in all of our lives and combined elements of it is a kind of more than the sum of the parts. So, I think we know this as individuals, but perhaps as a community, we haven't been quite as clear in articulating that within the MS space more generally.   Helen Rees Leahy (12m 46s): So, I think it's about within the OMS community, becoming more empowered, connecting with each other. And as I say, becoming a stronger voice for the program within the MS space. So, as you say, Geoff, with a healthcare professional, who's a little bit skeptical, with a family member who, you know, is perhaps questioning why somebody with OMS needs to have time and space for meditation or stress reduction, why family food might need to change. So, I think it's about increasing confidence, increasing empowerment, and doing this collectively. We're not expecting, you know, sort of magic wand that any one individual can do this by themselves.   Helen Rees Leahy (13m 30s): So, it's one of the ways in which we want to become more connected as a community as well.   Geoff Allix (13m 40s): And how can you advocate by using your own experiences? What approaches have you had for that? Could ask that to Allie if--.   Alison Marwick (13m 53s): Yeah. Yeah. So, I think a lot of OMSers are naturally advocates because, and you've had many of them here doing podcasts and talking passionately about how following the program has transformed their lives. And as Helen said, not just from a physical perspective, but from a mental perspective, and how they feel about themselves and their own empowerment. So, we can all be advocates just by, you know, talking about our own experiences. And Helen, I'm sure you experienced this as well, but when I meet new people and you're having food in a restaurant or something, and everyone was like, "Oh, what can you eat?"   Alison Marwick (14m 37s): Why do you do that? Like, well, this is why, and this is, I've lived with this disease for, well, had a diagnosis for 10 years. I've followed this program for 10 years and I am in remission and everyone's like, wow. And they get it, you know, some people want to know more. Some people are like, oh, difficult subject, don't want to talk anymore. But I think everybody can be an advocate. We're not, what we're not saying here is everyone has to be. But I think by default, just by having conversations with your family and with your friends and by living your life, people will see that there's something there that you can, that you've got the confidence, you've got the ability and the, you know, you're managing your disease.   Alison Marwick (15m 22s): Helen, I don't know if you want to add to that.   Helen Rees Leahy (15m 26s): Yeah. I think you're absolutely right, Allie and I think the only thing I would add to that is for me, it's, as you say, our own kind of personal stories can be very powerful. And there's an idea which is becoming increasingly accepted and talked about within healthcare systems here in the UK, but also in other parts of the world as well. And this is the idea of experts by experience. It's the idea of the so-called patients being a kind of co-creator of their own kind of treatment plan and parts and acknowledging that alongside the medical model of medical knowledge and research, there are other forms of insight, knowledge, and understanding, which come from the lived experience of an individual and a group of individuals.   Helen Rees Leahy (16m 21s): And it's particularly true with kind of chronic conditions, such as MS. For me, it's more than just our own individual stories. It's actually reflecting on what we've learned, what we learned from those experiences and actually looking for what we have in common, because we know as we've said in this conversation already so far, each of us has a very distinctive experience of MS. And sometimes, you know, your experience is nothing like my experience. Let's put those differences to one side and focus more on what we have in common, what we learn, what we can learn jointly.   Helen Rees Leahy (17m 9s): And I should say, acknowledging both our vulnerability, but also our agency, our vulnerability I think, is what we get from MS. And I think our agency is what we get from OMS, from Overcoming MS.   Geoff Allix (17m 20s): And just as an aside, I mean, I find a lot of people who follow OMS and certainly myself, people always say, you look really healthy, and you look really well. And I've heard that from a lot of OMSers that people are always commenting. How well we look, and I said, I always say, well, yeah, apart from the obvious then yeah, I do actually feel, I think it does actually my sort of ex-- lived experiences that I am definitely healthier apart from the fact of MS. And that my healthcare providers are on board with that, and they said, yeah, I noticed that you're living a really healthy life.   Geoff Allix (18m 0s): You're doing exercise, you're eating a whole food diet, which is good, stress reduction, good. All those things are good things. It's not a, we're not doing some sort of really weird, out there, sort of unusual remedy. These are well founded, healthy things to do.   Helen Rees Leahy (18m 21s): Well. I think that's exactly right, Geoff. And if you had diabetes or a particular heart condition, much of the kind of advice that we follow in OMS would be recommended to you by your healthcare professionals, without any question at all. It's orthodox, it's standard practice. As you said, a few minutes ago, unfortunately, lifestyle management, let alone Overcoming MS isn't yet a kind of standard prescription for people with MS. But you're absolutely right, with-- and you also said something interesting a moment ago about, well, you've got MS so why not enjoy life, which kind of implies that somehow following the OMS program, you know, robs you of enjoyment, well far from it.   Helen Rees Leahy (19m 7s): You know, I think instead of thinking of it as a sort of rule space, sort of diktat, which, you know, is somehow a constraint. In fact, of course, it's a fa-- as you say, it's a foundation to be free and to lead a good life, a healthy life. And of course, to lead the best lives we can with MS.   Geoff Allix (19m 35s): And Allie, have you got a point as well? On that?   Alison Marwick (19m 37s): Yeah. I would add to that, just go back to your comment, Geoff, about people tending to comment that OMSers look well, I think the key thing though is that OMSers know that there are so many hidden aspects of MS. And so, you may look brilliant, you may-- you know, your skin, your hair, everything might be great, but you could be in a lot of pain or, you know, suffering from one of the many things that we know that are hidden to the wider world. So that, I guess, you know, one of the things that we do bring to bear in these kinds of conversations is that yes, we know that the health, the lifestyle and the-- is great.   Alison Marwick (20m 21s): And people comment that physically, we look like what they can see, we look well. But actually, those of us who live with the disease know that there's lots of hidden things there as well. So, we're not, we're not dismissing that, but acknowledging it, and you're working on, you know, helping people in, you know, who are struggling with some of those areas as well. So, there's, it's not, we're not all running marathons and all that kind of stuff. It's about empowering people wherever they are with their disease, and you know, where they are physically and mentally, even if everybody thinks we're all fine.   Geoff Allix (21m 5s): Yeah. We're like swans. We look great on the surface, but an awful lot of work underneath.   Alison Marwick (21m 8s): Absolutely. Absolutely. But, and to Helen's point, you know, I don't, I agree. I don't think that following OMS is a burden. I don't know if somebody told me I could eat meat tomorrow, I'm not sure that I would. I'm, you know, I have-- my life is much more enriched. I've had more confidence, I think, as a person to be able to do things, but I never thought prior to diagnosis that I would do, I guess I've taken life by the horns a little bit more than I would have done before. And certainly, living those years between 2004/5 and 2011. I lived in fear just waiting for the next relapse to happen and made some lifestyle or life decisions that I've completely reversed since following OMS, because I'm not afraid anymore.   Alison Marwick (22m 2s): And I think that's, I think, you know, giving people their hope back is such an important thing with OMS.   Geoff Allix (22m 13s): And so, we talked about advocacy a lot, now on to the OMS advocacy group. So, what is the advocacy group and why is it important to have this group?   Helen Rees Leahy (22m 26s): So, we created the advocacy group at the start of this year, starting 2021. And the importance of it is precisely that it's the goal of empowerment needs to start at home, i.e., within the OMS community. So, with all this discussion about advocacy, we're very clear about this guiding principle, that it must be a kind of community-led initiative. So, from the outset, we wanted to have the voices of OMS as around the table, helping us to start the conversation. And I would certainly want to emphasize that we're still very much at the beginning of this work, which is why it's so great to have this conversation today because we hope it might be a spur for more people to join in the conversation.   Helen Rees Leahy (23m 13s): So, so far, the advocacy group has met, I think, four or five times. It's a small group of OMSers. And we've really been just trying to kind of unpack this, just what we'll be doing today. Really just what this word advocacy means and what might it mean in practice with OMS. So there, the advocacy group is important because it's an initiative which is being led by OMSers. And as I say, we're certainly not complete as a group with small gathering so far. So, if anybody's listening to this podcast today and would like to become more involved, either by suggesting they might want to join the group, we meet every couple of months on Zoom and, or contributing to our advocacy thinking in any other way.   Helen Rees Leahy (24m 1s): If I may just say, Geoff, as soon as this podcast goes live, also going live will be a new advocacy page on the Overcoming MS website. So, if you're on the website and you type in advocacy, or if you're in Google and you type in Overcoming MS advocacy, you'll land on that page. It will give a bit more information about where we are so far, and they'll also be a kind of contact info there. So, you'll be able to get in touch with us if you'd like to be more involved in it, to find out more about what we're doing. And we'd really, really welcome that. As I say, we think sort of empowerment has to start within OMS and we're really determined that we sort of put that principle into practice.   Alison Marwick (24m 48s): Yeah. And just to add to that, Helen, I think is key for anyone that's listening, that we would love people to join the group because we do need more members, but also if you feel that joining the group is too much of a commitment and you don't, you know, you're not comfortable with that, but you want to share something, share an experience. You know, for OMS, the advocacy model we're seeing as being in three parts of self-advocacy being able to talk about it yourself, to your friends and family, and peers. So, talk to other OMSers or OMS or collectively as an organization, you know, to healthcare providers, if you have stories, or if you've got something that you want to share with us, you don't have to join the group.   Alison Marwick (25m 36s): But we're keen to hear, we're, as we mentioned earlier, we're looking at the community engagement survey that so many people responded to over the summer, which is great. And there's a huge amount of data in that, around how people feel empowered or not, some of the challenges that they have. And, you know, so there's some decent information that we can use that, but if, you know, if you haven't shared with us some of your experiences and you feel that, you know, it's something that the organization needs to be aware of because it could help other people, then, you know, the call to action is for those as well as, you know, other individuals, to join the group.   Geoff Allix (26m 20s): And if someone's not comfortable with joining a group, whether they don't have time or they're just, they're not comfortable with sharing, are there resources for people to help them with their advocacy journey?   Helen Rees Leahy (26m 38s): Definitely. Well, as Allie said, definitely there will be. What we did want to do is sort of go off and design those resources by ourselves without talking with our fellow OMSers. So that's exactly what we're planning to do. And as Allie says, people can contribute to that process in all sorts of ways. So, what we're aiming to do, and it will be something which I think you'll be able to see sometime in 2022, we want to take it carefully. We're developing resources, which will specifically be there to support people in as with talking, making the case, perhaps giving them some tools and tips for perhaps quite tricky conversations.   Helen Rees Leahy (27m 25s): When, you know, you're talking to somebody who's a little bit skeptical or resistant to your own kind of commitment to Overcoming MS. So, for example, some of the resources we might have might be frequently asked questions, we might play out some different scenarios, you know, how to cope with challenging or tricky conversations. We're having conversation starters, how do you kind of begin to talk to different people, family, friends, colleagues, healthcare professionals, about this? If you're going to see a healthcare professional, be it your family doctor, or hospital neurologist, or MS Nurse, for example, how might you prepare for that encounter?   Helen Rees Leahy (28m 11s): How might you prepare for that meeting? How might you begin to talk about Overcoming MS with a healthcare professional? And I think that can be quite a challenging meeting in some respects because we know that our expertise is the expertise of lived experience. And as you were saying a few minutes ago, that's neither better nor worse, but it's very different from sort of the medical model for medical expertise. So, we need to be clear about the insight and understanding that we bring to the conversation based on our lived experience and how that can communicate and become a conversation with a healthcare professional.   Helen Rees Leahy (28m 55s): So, we're thinking about these kinds of resources and that's sort of really a first step. So yeah, that's where we're thinking at the moment. But as Allie says, where we're really beginning is also a process of information gathering. So, looking really closely at the community engagement survey data, which is fascinating. And we might just take this moment to thank anybody and everybody who's listening, who participated in the survey because really, you know, your responses are providing really for the first time, I think for Overcoming MS, you know, statistically robust sample of data and findings, which are telling us so much already, and we've really want to root this initiative in that lived experience of the OMS community.   Geoff Allix (29m 55s): And could I ask, what do you think success would look like? How do you measure success, or what do you expect to be a successful outcome of the advocacy group in OMS?   Helen Rees Leahy (30m 14s): Do you want to have a go with that Allie?   Alison Marwick (30m 15s): Yeah. So, success, so we're going to measure success in a number of different ways. And I think we're going to, you know, we need to look to see if there's the global success in OMS being everywhere, but that's going to be quite a way off. So, let's look at it. The community engagement survey is going to be done on an annual basis. And so, we will be using the empowerment questions that are part of that to see whether or not we've shifted the dial on how empowered people feel and having control, how confident they are about talking to their healthcare providers, how supportive family and friends are. So, we're going to use that as a mechanism to be able to measure, but that's going to be another year before we do that.   Alison Marwick (30m 59s): So obviously we're not going to just sit back and wait to see what the results are, I think other success factors are going to be about how many people engage with this process that want to get involved. And we're going to look at success with, you know, some of the material that's going to be created in terms of, as Helen said, talking to healthcare providers, you're preparing for those kinds of conversations. How many of those items get downloaded from the website? What the kind of conversations are across the forum and the website, and looking at it, generally you know, how many more people are finding it, you know, finding the confidence and the empowerment.   Alison Marwick (31m 48s): So, we've not put together specific, eh, KPIs, success factors at the moment, not wanting to be too corporate about it, but, you know, because we are right at the very beginning. But we are, you know, we're looking at well, what do we want, what is success going to be in the next six, 12 months before we move into, you know, really accelerating us further down the line?   Geoff Allix (32m 12s): Helen, do you have anything to add to that?   Helen Rees Leahy (32m 16s): No, I think Allie outlined that very well. Again, if you're listening to this and you think, okay, I know something that will be a good measure of success. Let us know. You know, as I say, we really want this to be very much informed by anybody and everybody within the OMS community. So as Allie says, I'm reluctant to pin things down too hard and fast too quickly.   Geoff Allix (32m 42s): So, with that, I'd like to thank you very much for joining us on the podcast and encourage everyone to have a look at the OMS advocacy page and wish you every success for the OMS advocacy group. So, thank you very much for joining us, Helen and Allie.   Helen Rees Leahy (33m 1s): Thanks a lot, Geoff.   Alison Marwick (33m 3s): Thanks, Geoff.   Geoff Allix (33m 4s): And thank you for giving us this chance to wave the advocacy flag. Thank you.   Alison Marwick (33m 13s): Yes, thanks very much.   Geoff Allix (33m 14s): Thank you for listening to this episode of Living Well with MS. Please check out this episode's show notes at www.overcomingms.org/podcast. You'll find all sorts of useful links and bonus information there. Do you have questions about this episode or ideas about future ones? Email us at podcast@overcomingms.org and we'd love to hear from you. You can also subscribe to the show on your favorite podcast platform, so you never miss an episode. Living Well with MS is kindly supported by a grant from the Happy Charitable Trust. If you'd like to support the Overcoming MS Charity and help keep our podcast advertising free, you can donate online at www.overcomingms.org/donate.   Geoff Allix (34m 1s): Thank you for your support. Living Well with MS is produced by Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity. We are here to help inform, support, and empower everyone affected by MS. To find out more and subscribe to our email newsletter, please visit our website at www.overcomingms.org. Thanks again for tuning in and see you next time.

Living Well with MS is proud to welcome back Dr. Aaron Boster, an Ohio-based neurologist specializing in MS, who has featured on episodes that tackled exploring how to make the right medication choices and the impacts of lifestyle choices on MS. Now we tap his expertise to help us grapple with an important topic that isn't discussed as often as it should be – sex. Sex and sexuality are vital dimensions of a healthy life, but how are they impacted by MS? Our discussion with Dr. Boster digs into the science and practical implications behind this topic, so let's talk about sex and MS!   Dr. Aaron Boster's Bio:   Dr. Aaron Boster is an award-winning, widely published, and board-certified neurologist specializing in multiple sclerosis and related CNS inflammatory disorders. He currently serves as the Director of the Neuroscience Infusion Center at OhioHealth. Witnessing his uncle's diagnosis with MS when he was 12, he and his family came to see a lack of coherence in the way MS was treated at the time. That experienced informed Dr. Boster's drive to do things differently. At OhioHealth, he spearheads a revolutionary model in MS treatment and patient care drawing on interdisciplinary resources and putting patients and families first. Dr. Boster is also an Adjunct Assistant Professor of Neurology at Ohio University Heritage College of Osteopathic Medicine, and a former Assistant Professor of Neurology at The Ohio State University, where he also formerly headed the Neuroimmunology division. OMS has recently been pleased to welcome Dr. Boster as one of the newest additions to its Board of Trustees.   Dr Boster has been intimately involved in the care of people impacted by multiple sclerosis; he has been a principal investigator in numerous clinical trials, trained multiple MS doctors and nurse practitioners, and been published extensively in medical journals. He lectures to both patients and providers worldwide with a mission to educate, energize and empower people impacted by MS.    Dr Boster grew up in Columbus, Ohio and attended undergraduate at Oberlin College. He earned his MD at the University of Cincinnati College of medicine and completed an internship in Internal Medicine and Residency in Neurology at the University of Michigan, followed by a two-year fellowship in Clinical Neuroimmunology at Wayne State University.    He lives in Columbus, Ohio with his wife, Krissy, son Maxwell, and daughter Betty Mae.   Questions:   Aaron Boster, welcome back to Living Well with MS, and thanks for joining us again. Before we dig into this episode's main topic – sex and MS – there's a recent bit of news to mention. You've joined the Overcoming MS board of trustees. There is no doubt OMS is happy to have someone of your medical and clinical expertise on its board. How has the experience been so far and what compelled you to join in this capacity? Let's shift gear into our main topic – sex and MS. This is quite important and perhaps not discussed as often as it should be. First off, how would you define sexuality in the context of MS? Is it common for people with MS to experience sexual dysfunction or other challenges with having a normal sexual life? Do the types of sexual dysfunction differ depending on the types of MS you have? If a man is experiencing sexual dysfunction connected to his MS, what are his options for overcoming or managing it? What if you're a woman experiencing sexual dysfunction connected to your MS. What are your options for managing it? Some people with MS encounter some sort of physical impediments or disabilities. How might that affect your sexual life and what can you do about it? Is there any specific research currently going on that studies MS and its influence on a person's healthy sexual life? If there was one critical takeaway you could share with anyone in our audience experiencing sexual issues related to their MS, what would it be? Before we wrap up, and on a totally different note, I couldn't let someone of your expertise leave the guest chair without asking you a question of personal interest to me as well as many other members of our community – about supplements. There are many out there to choose from, from Co-enzyme Q10 and probiotics to things like Ginkgo Biloba, Echinacea, St. John's Wort, Valerian, Ginseng, and many more. Is there a general framework for deciding whether to try a supplement and are there any whose positive effects are supported by an evidence base?   Links:   Check out Dr. Boster's popular YouTube channel covering all aspects of MS. Boster is now a trustee of Overcoming MS.   Coming up on our next episode:   In just a few days, you can get another dose of our podcast with the premiere of the 24th installment of our Coffee Break series, as we travel (in the eco-friendly virtual sense) to Christchurch, New Zealand to meet another fascinating member of the OMS community, Lieza Vanden Broeke. Lieza has a remarkable personal backstory, and her experience with MS will provide insights and inspiration to our global community. Plus, she's also the ambassador of the OMS Circle in Christchurch. Thanks to Lieza for her candid interview, and to our listeners for being part of the OMS podcast family!   Don't miss out:   Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. Don't be shy – if you like the program, leave a review on Apple Podcasts or wherever you tune into the show.   S3E43 Transcript Let's Talk About Sex (and MS)   Geoff Allix (Intro) (2s): Welcome to Living Well with MS, the podcast for Overcoming MS for people with multiple sclerosis interested in making healthy lifestyle choices. I'm your host Geoff Allix. Thank you for joining us for this new episode. I hope it makes you feel more informed and inspired about living a full life with MS. Don't forget to check out our show notes for more information and useful links. You can find these on our website at www.overcomingms.org/podcast. If you enjoy the show, please spread the word about us on your social media channels. That's the kind of viral effect we can all smile about. Finally, don't forget to subscribe to the show on your favorite podcast platform so you never miss an episode.   Geoff Allix (Intro) (44s): Now without further ado, on with the show.   Geoff Allix (48s): Living Well with MS is proud to welcome back Dr. Aaron Boster, an Ohio-based award-winning, widely published, and board-certified neurologist, and the founder of the Boster Center for Multiple Sclerosis, who was featured on past episodes that tackled exploring how to make the right medication choices and the impacts of lifestyle choices on MS. Now we tap his expertise to help us grapple with an important topic that isn't discussed as often as it should be – sex. Sex and sexuality are vital dimensions of a healthy life, but how are they impacted by MS? Our discussion with Dr. Boster digs into the science and practical implications behind this topic. So, Dr. Aaron Boster, welcome back to Living Well with MS.   Geoff Allix (1m 28s): And let's talk about sex and MS.   Dr. Aaron Boster (1m 30s): Thank you so much for having me. I'm delighted to be back. And you're right, this is an underappreciated topic which needs to be discussed much more frequently. So, I'm glad that we're doing this today.   Geoff Allix (1m 41s): Before we dig into the main topic of sex and MS, there's two things I'd like to mention. Firstly, I just want to call out that your YouTube channel, which is very easy to find, if you just search for Aaron Boster on YouTube, you'll find it. In fact, if you search for MS on YouTube, I think it would come pretty high. It is personally, I think the single best resource for a person with MS.   Dr. Aaron Boster (2m 7s): Wow.   Geoff Allix (2m 8s): Hugely it is... I don't know how many videos you probably are much more aware than me, but I'd say hundreds. There are huge numbers.   Dr. Aaron Boster (2m 15s): Yes, 450 some.   Geoff Allix (2m 18s): Right. So, whatever topic there is an episode there, and I've found it incredibly useful, incredibly informative. So, I would –   Dr. Aaron Boster (2m 25s): So, nice of you to say thank you.   Geoff Allix (2m 27s): Well, yeah, I mean, I just think it's, I encourage everyone just going to have a look. It's just, you don't have to look at every topic. Recently, there's one on cannabis and MS. At which in the UK, the police would have different opinions. So, bits aren't going to be, you know, I mean appropriate for everyone. But yeah, there's such a wealth of resources there. So, the second thing, you've joined the Overcoming MS Board of Trustees.   Dr. Aaron Boster (2m 56s): Yes.   Geoff Allix (2m 56s): Yeah, I think everyone at OMS is happy to have you on board, and your medical and clinical expertise. So, what compelled you to join? And how has it been so far?   Dr. Aaron Boster (3m 9s): Thank you. Let me answer those in reverse order. Today, it's been awesome. There's a significant onboarding process, and I've had a great time meeting the other Board of Trustees members, getting to know the Chair, the CEO, and really starting to get to understand the organization. So far, I've participated in one formal board meeting. It's been pretty great so far. I am really excited for what's coming with Overcoming MS over the next couple years. So, the fact that I get to participate is really, really special to me. Now, what compelled me to do it? Really two things if I may. The first thing is, if you look at my style of MS, my brand of delivering MS care, and the tenets that I have developed and talk about and teach.   Dr. Aaron Boster (3m 58s): And you look at the tenets of Overcoming MS, they are remarkably convergent, like remarkably so. When I list out being five for five, when I talk about the importance of family, I mean, we just listed six of the seven. I mean, we're very, very converged. That was one thing that as I started to learn more about Overcoming MS, I said, “Wow, these folks are really thinking along the same lines as me.” The second thing is, getting an MS diagnosis is scary. And it's a moment in time when people aren't sure what to do. And in certain locations there's awesome resources to shepherd someone through an early diagnosis.   Dr. Aaron Boster (4m 41s): But in many locations, that's probably lacking, and access is a major issue. And so, if you're in a spot where you're recently diagnosed or you don't know what to do, reaching for something that is ready made and awesome is a beautiful thing. And I'll be transparent. In my religion, there are a set criteria of things that you're supposed to do when someone dies. Okay. So, if you don't know what to do when you're grieving the loss of a loved one, there's some set things you're supposed to do: You're supposed to grieve for a certain amount of time. The community helps you in a certain fashion. And really, in the absence of knowing how to cope in grief with a loss, that is an awesome structure to have.   Dr. Aaron Boster (5m 24s): And in many ways, I think for someone newly diagnosed with MS, this is a beautiful thing to say, “Sure do this.” So, for both of those reasons, I'm really, really excited to participate. It's been a great experience so far. So more to come.   Geoff Allix (5m 39s): And one thing I would say that you have that Overcoming MS doesn't, but should do, I think as an extra pillar would be drink more water. And that's not an Overcoming MS thing. So, we're on a podcast. You can't see me. I'm just picking up my glass this very moment.   Dr. Aaron Boster (5m 56s): Sure. And I've got water in my mug, yeah, yeah. So, I'm   Geoff Allix (5m 59s): And I think that's, I know we're going off-topic here, but I think that it should be. It's such a simple thing. And because a lot of us have bladder issues and things, and then you sort of say, “Okay, maybe drink less because that's a bladder buster.” I even know it. I know, if I didn't drink enough, then I feel worse. It's one of those instant things. So, some of the things with MS, slow burn as a summary instant. Stress is instant, dehydration is instant.   Dr. Aaron Boster (6m 27s): Absolutely spot on. And, you know, I like to challenge people sometimes because I'll say, you know, drink more water, and they'll say something to the effect of, "You sound like my mom." You know, or like, that's silly advice. I'll say, “Okay, but try it.”   Geoff Allix (6m 39s): Yeah.   Dr. Aaron Boster (6m 39s): Try drinking an adequate amount of water for like three days and see what happens. You know because people are shocked. They're like, “Oh, my gosh, I really do feel better.”   Geoff Allix (6m 45s): Yeah. And you've made it really simple as well. So, I just drink a pint or half liter with each meal, and then drink a pint or half liter between each meal.   Dr. Aaron Boster (6m 56s): Yeah, then you're done. You just did.   Geoff Allix (6m 59s): Yeah.   Dr. Aaron Boster (6m 59s): Spot on. Yeah. Then you're good for the day. And unfortunately, so many people, and you give a great example as to why they may shy away from water intake, and inadvertently make their situation so much worse.   Geoff Allix (7m 10s): Yeah, so I'd like to. Yeah, so on your next board meeting. So, can we add an extra? Drink more water.   Dr. Aaron Boster (7m 19s): Okay. I'll bring it up. As we talk about sex, this, we will come back to this whole bladder thing. It is very, very related.   Geoff Allix (7m 27s): I was going to think, yeah. I was thinking you can't say, drink water during sex, that wouldn't work. But anyway. So, let's get on to our main topic, sex and MS. So, it's a very important one. I mean, it's obviously very important for the survival of the species as much as anything, but it's an important topic. And probably not discussed often enough, often embarrassing. So, how would you define sexuality in the context of MS?   Dr. Aaron Boster (8m 2s): So, you know, sexuality arguably would be defined as humans' ability to experience sexual feelings. It's a really broad blanket term for a lot of things related to sex. So, my first comment is I don't think of sexuality in someone impacted by MS any different than I do in any other human. And I think that's actually a very, very important distinction because there's nothing unique about the sexuality of human being if they happen to have a chronic illness or not. Now, playing out sexual behaviors, intimacy, all these wonderful things, MS can risk interfering.   Dr. Aaron Boster (8m 46s): And that's where we get into a really important discussion. And that's where sometimes we really need to try to help educate and intervene.   Geoff Allix (9m 1s): So, is sexual dysfunction more common for people with MS? Does it increase the chances?   Dr. Aaron Boster (9m 7s): It certainly is. Now, you know, MS is a situation where the immune system can affect any part of the supercomputer that runs your body - the brain, and the superhighway - the spinal cord. And unfortunately, there's plenty of specific areas in the brain and spinal cord where if there's damage, it could interfere with sexual functioning. And so, the spinal cord is a really good example. Very commonly, when someone has a transverse myelitis, inflammation in their spinal cord, then they may find that their limbs are numb or kind of weak. But they also will very likely notice problems with the down theres – bowel, bladder, and sexual function. And this is, unfortunately, all too common in the setting of MS.   Dr. Aaron Boster (9m 48s): I would also say that it's oftentimes overlooked by the MS clinic, something that's kind of glossed over and not discussed. And given that it's somewhat of a taboo topic in casual conversation, I think patients are sometimes a little bit nervous to bring it up.   Geoff Allix (10m 8s): And does the type of MS you have whether it's relapsing or progressive, does that affect the types of sexual dysfunction you might have?   Dr. Aaron Boster (10m 16s): I would say no. I would rather think about the kinds of sexual dysfunction a little bit differently. Not so much related to the phenotype of MS. So, someone with relapsing MS, or Primary Progressive MS, Secondary Progressive MS, what have you, I don't see different kinds of sexual problems. I would run about it as follows: primary sexual dysfunction, secondary sexual dysfunction, and tertiary sexual dysfunction. So, just to share a couple quick definitions that helped me when I'm thinking about this. Primary sexual dysfunction is a problem with the circuitry and hormones of sex. So, when the down theres are stimulated, there's a lot of circuitry that goes on to assist in intercourse.   Dr. Aaron Boster (10m 58s): That message in the down there has to go all the way up to the brain, through the spinal cord, where the brain interprets the activities and says, “Ah, okay.” And then it sends messages from the brain back down to the down theres to do certain things. We're talking about arousal, orgasm… excuse me, arousal, either erection or lubrication depending on the gender, and then eventually orgasm. And so primary sexual dysfunction can result from MS damage in the brain and spinal cord. And what can happen is you can end up with problems in the circuitry. And so, you can have difficulties with any of those things - arousal, erection, maintaining an erection, ejaculating or arousal, lubrication orgasm.   Dr. Aaron Boster (11m 43s): The other piece to this when I think about primary sexual dysfunction is imbalances in hormones. And I have, for several years now started to routinely screen gentlemen, for example, looking at testosterone levels. Not just to help with sexual function, but there's also ramifications through other aspects of MS, believe it or not. So that's kind of primary sexual dysfunction. And we'll talk maybe a little bit later about how we overcome those things. Secondary sexual dysfunction is important and very often overlooked. And it's a situation where there's problems with sex, not because of the circuitry of sex, not because of hormones, but because of MS symptoms that make things not sexy.   Dr. Aaron Boster (12m 24s): For example, if you're having intercourse, and you lose your bladder, it may stop the activity. I mean, you know, that's like scary to a lot of people. They would think, “Oh my goodness, gracious.” And if you're having intercourse and your leg goes into an extensor spasm, it's extremely painful, you're not having sex anymore. Yet even things like motor fatigue can make it so that, you know the activity of intercourse can become challenging, and these are all secondary sexual dysfunction issues. This is where, to be honest, we can really gain a lot of ground. Now, tertiary sexual dysfunction, I would define as not so much the circuitry of sex or symptoms that interfere with sex, but it's more of a psychological phenomenon where the human being doesn't feel sexual.   Dr. Aaron Boster (13m 11s): They don't feel like a sexual being. They feel maybe like an they feel ill. They don't feel that they can be sexy. And so, when I think about sexual dysfunction, I find it most helpful to kind of try to bucket things into those categories. And oftentimes, we're dealing with all three.   Geoff Allix (13m 35s): And so, if we break it down into men and women, what options would a man have if he's experiencing sexual dysfunction connected with MS? Or how could that be managed or helped?   Dr. Aaron Boster (13m 50s): Absolutely. And so, if we first think about arousal, and this is actually true for both men and women. I'll make sure to give distinctions. When we think about arousal, the first thing I want to do is I want to look at their medicines. And I want to look and see if I have them on medicines that can impair arousal. And you'd be shocked at how many can. So, unfortunately, many of the SSRI and SNRI antidepressants, which are used very commonly in humans can impair libido. And so, you may have significant sexual dysfunction because of a high dose of Zoloft, for example. And so, we need to look at that. And there's a host of other medicines that could interfere with arousal.   Dr. Aaron Boster (14m 31s): Also in the setting of arousal, for gentlemen, we'll look at testosterone levels, and look and see if his testosterone, which I would like to be above 400 is down like in the 100s. And maybe that's a component as to why that's a problem. Another very, very, very common because of loss of arousal or interest in both men and women is depression. Now depression is twice as likely to be experienced by a person impacted by MS compared to the general population. And one of the hallmarks of depression is something called anhedonia. Where just stuff that you enjoy just isn't really that much fun anymore. Like if you do really like book club or watching TV, doesn't do it for you.   Dr. Aaron Boster (15m 10s): And so that can happen with sex, which is a major thing. And because depression is so common in MS, we would be foolish not to screen for that, or ask the question, could that be related to arousal? And so other things that we think about in both men and women, recent psychosocial stressors. You'll hear about a guy lose his job, and then he's not interested in intercourse, because he's really dealing with, he's kind of stressed out. So, I really require not just some laboratories, but also a careful history and some open honest communication when dealing with the gentleman's issues as it relates to arousal.   Dr. Aaron Boster (15m 56s): The women, I guess, if it's okay with you, let me answer the same question for women just really quick.   Geoff Allix (16m 2s): Yeah, it's okay.   Dr. Aaron Boster (16m 3s): So, with women, we will look at all the same things I just said. Right? Hormone levels included. And then in depression included in the like. With women, there's actually interestingly two FDA approved therapies to help women with low libido, which is really cool. And interestingly, not known by many, many people. So, there's a medicine which is approved in the United States of the trade name Addyi, A-D-D-Y-I. And I'm spelling it for you because I'm blanking as I talk to you about the generic name. So, I'm sorry. And that is a pill taken once a day, which in about half of our patients results in improving female libido quite substantially.   Dr. Aaron Boster (16m 46s): There's also an injection that's administered by urologist. And I don't, I've never prescribed it. It's called PT141. And this is also a therapy that can be very, very helpful in helping with female libido. So, there's actually more options to help with female libido than male. And so that's the first area. And I want to stress that you can't really skip over it. It is so terribly important. When we then talk about the second phase of things that would be erection for gentlemen. I like to divide my thoughts about erections into half. There is obtaining an erection and then maintaining an erection adequate for a penetration of vagina, anus, mouth, whatever it is that you're trying to accomplish that evening or day.   Dr. Aaron Boster (17m 28s): And so, with erections, we want to find out, are you able to -- do you have erections when you wake up ever? Like it is the physiology, the circuitry of erections, is that intact? Are you able to maintain an erection on your own, like through masturbation, for example? And during intercourse, what's going on? And this conversation is important because, again, we have to think about primary, secondary, tertiary options. Primary sexual dysfunction, most commonly occurs because of spinal cord involvement in MS. And what essentially happens is the down there are stimulated and as the message is going up the spinal cord it dies.   Dr. Aaron Boster (18m 9s): So, the message is never delivered to the brain. So, the brain is not informed of the dealio. So, in this situation, something that can be extremely helpful is a plug in the wall vibrator, right? So, I sometimes on podcasts and whatnot have talked about the vibrator trick, which I'll share now. In the vibrator trick is where you spend 60 bucks American and you purchase a plug in the wall vibrator. And my favorite brand is Hitachi Magic Wand. I don't have a contract. Though I would do a branding deal with them in a heartbeat until –   Geoff Allix (18m 43s): I believe, they're mentioned on the Sex in the City way back.   Dr. Aaron Boster (18m 47s): Yeah, certainly. Certainly. So, this is marketed as a back massager. And it's a plug in vibrator. And the reason it's so important is we need kind of like overdrive stimulation, right? A double D battery vibrator is not going to cut it for this purpose. And then what you do is you apply a water-based lubricant to the genitalia because that increases skin sensitivity. And then you apply the plug in the wall vibrator, you know, the hardcore power from the wall, and you apply it on the glands, penis, you apply to the head of the penis, you applied it under the testicles, you apply it somewhere where it feels good. And this is providing overdraft stimulation. Just to make the point clear, I'll use an example of us talking right now.   Dr. Aaron Boster (19m 29s): So, I'm talking using my indoor voice because there's no interference between essentially my mouth and your ear, even though we're across the continent, and there's microphones, and speakers and stuff involved. Now, let's say that we were having this exact same conversation during business hours. I'm in my lobby of my office. Today is Sunday. But if this was a busy business day, it would be super loud in here. And you wouldn't be able to hear me when I used my indoor voice. So, I would have to use overdrive stimulation. I would have to scream, and really project really loudly so that you could hear me. And that's what we're doing with a plug in the wall vibrator as it relates to intercourse. We're providing overdrive stimulation so down there can get the message to the brain and let the brain know what's up.   Dr. Aaron Boster (20m 13s): Now the advantage of a plug in the vibrator is there's no side effects. It's relatively inexpensive. And you can do it by yourself during masturbation. You can do it before intercourse as a form of foreplay. You can literally hold the device between you and your partner with continuous stimulation during intercourse. And it works well for both men and women. So, everything that I just said with regards to obtaining erection can be applied to maintaining an erection by using the vibrator. And we have taught some gentlemen, if they have difficulties they'll withdraw, and then they can apply the vibrator to the shaft of the penis, it will become adequately erect again, and they can continue having fun.   Dr. Aaron Boster (20m 55s): And so, this is a very helpful tool. Now, probably the most widely utilized tool is a little blue pill, right? So, Viagra, Cialis, and the like are very, very helpful medicines, in helping gentlemen obtain and maintain erection, pharmacologically, they're superb. And so, if there isn't a cardiovascular risk, why you can't handle the Viagra or Cialis, what have you, that's a very useful tool. Taken about an hour before intercourse works best on an empty stomach. You do have to worry about light-headedness, and there's some blood pressure concerns. And that can make a really big difference in a guy's life. You know, it's of note that if you want to make an adult miserable, mess up their ability to eat good food or have sex, and then we'll be miserable.   Dr. Aaron Boster (21m 41s): And MS risks interfering with sex for sure. And so, a little blue after dinner mint can really change a guy's outlook on life. Now, again, on the topic of obtaining and maintaining erection, testosterone level is very, very relevant. Now, there's a bunch of other things you can do. For example, intracavernous penile injections. So, before the era of pills, we had the shots on the side of the penis, and everyone listened going, “Ooh!” But in exchange for that route of administration, you have a fantastic erection. And sometimes when pills don't work, we still go back to those tried-and-true methods.   Dr. Aaron Boster (22m 24s): Other things that you can do if you're a gentleman, using a device, you can trap the erection. So, you can use a vacuum device, which can be very, very effective. And if you're really serious about an erection, and those things aren't working, urologists can actually do penile implants. I have some patients who have been very, very happy with penile implants because nothing else was really working for them. So, you know, you might say, how dedicated are you to your erection? Because if you're dedicated enough, we can guarantee that you'll be able to be erect.   Dr. Aaron Boster (23m 6s): Getting into the same questions with women, we're really dealing with lubrication, alright? And engagement of the tissue to allow adequate arousal. And so, that's kind of the equivalent for women as erections are to men. And there's several ways of addressing difficulties that a woman may have with lubrication. So, one thing you can do is apply a water-based lubricant. Very straightforward, very, very effective. Another option is to apply an estrogen cream to the vulva. If you're not taking systemic hormones, and there are reasons why some women may not be appropriate for taking systemic hormones, because of cancer risks. Applying a hormone cream topically is really great because it's just absorbed locally.   Dr. Aaron Boster (23m 51s): So, there's no systemic risks. But applying an estrogen cream can really help with engagement and with lubrication. We very commonly prescribe a compounded cream which is called scream cream. And it is what it sounds like. It's a compounded mix, which includes Viagra and theophylline and several other agents which help in increase blood flow and encouragement and help with lubrication. And so, someone may have a can of scream cream that they use in preparation for intercourse. And so those things can be very, very helpful. Obviously, adequate clitoral stimulation, or vaginal stimulation through the same plug in the wall vibrator is a really smart tool.   Dr. Aaron Boster (24m 32s): And that can help with lubrication. Now, the tips for orgasm, for achieving orgasm are all along the same lines. Really we have to bring, for both men and women - primary, secondary, and tertiary measures to the table to achieve orgasm. And sometimes we have to take extra measures depending on the specifics of the individual. But the point that I hope I'm conveying is, is that: number one, there are a lot of options to make this better if you're a boy or girl. And number two, it's worth it. Right? It's worth it to have an excellent sexual experience. Sorry, that was a little bit of a long-winded answer.   Dr. Aaron Boster (25m 14s): I got a little carried away there but talk about that.   Geoff Allix (25m 15s): No, no its good. And so, what you've talked to us about was very medical. But you mentioned especially the tertiary side of it.   Dr. Aaron Boster (25m 25s): Yes.   Geoff Allix (25m 25s): I love the thinking as well.   Dr. Aaron Boster (25m 26s): Yes.   Geoff Allix (25m 26s): So, is it worth getting counseling, maybe couples counseling? Because still, it's difficult to -- and this happens, whether you have MS or not. It's to convince the other person it's useful.   Dr. Aaron Boster (25m 34s): Super, super important. In fact, if you said, “Aaron, what's the number one tip?” The number one tip is none of the stuff I just mentioned. The number one tip is talking to your partner. So, let's discuss that. Very commonly, independent from having a chronic condition like MS. Very commonly, we have hang-ups about sex, and we have areas of concern or embarrassment, or topics that we're shy about. For example, many people are reluctant to flatulate in front of their spouse. Right? So, that's the thing. Like, you know, we don't want to do that. And so, talking about sex is not something that most of us are just completely at ease doing.   Dr. Aaron Boster (26m 20s): Even with our spouse, even with a monogamous partner of 30 years. And when you have a chronic condition, like multiple sclerosis, which can, as we've talked about interfere with the circuitry and the success of intercourse, it adds complexity. It doesn't make it easier, it makes it harder. What I have found in talking to families for over a decade and a half now. And I'm very, very open about this topic in that oftentimes, the two members of the couple would love to talk to the other person. They are dying to talk the other person about this, and they are nervous.   Dr. Aaron Boster (27m 4s): And when they broach a conversation, it's almost cathartic because together, they can game out an earth shattering, toe-curling, blood-curdling orgasm that would set land speed records and make the neighbors call to make sure everyone's still safe. And it's accomplished because of communication with the partner. Say, and let me be a little bit granular. One partner may really enjoy a particular position in sex because it's really fun for them, which might cause the other partner with MS to go into spasms. Or it may make the other partner develop truncal ataxia, or maybe it overheats that partner. And the person with MS might not be sharing that.   Dr. Aaron Boster (27m 46s): They may not be telling the spouse or the partner, “Hey, listen, when you lay on top of me like that, you're a heavy dude, my body gets heated up and I can't feel anything. Get off me!” You know, simply talking about changing something as simple as a sexual position might be the answer to really meaningful intercourse. So, you are very spot on in bringing this up. And if you are uncomfortable talking about the topic, let's game out several things that you can do to broach the situation. Okay. So you could, for example, do couples counseling. Couples counselors are very wonderful because they can help be sounding boards.   Dr. Aaron Boster (28m 27s): “Did you hear what he just said? Let me repeat it for you.” I mean, you know, they're fantastic kind of notes. I really like couples counseling myself. There are sex counsellors, alright? I mean, maybe another thing to do is just to have the person listen to our podcast that we're doing right now and say, “Hey, the little balding, hyper neurologist in Columbus, Ohio was saying we should talk about sex. I mean, what do you think?” And maybe that broaches a conversation. But if you can sit down and talk about sex, and really what I would want you to bring to the table is the following: What are your goals? Seriously. Is your goal to help your partner achieve orgasm? If that's a goal, state it. State that's a goal.   Dr. Aaron Boster (29m 6s): Is your goal to simply be intimate and touch one another? I mean, these are things that you should talk about. Are you going to orgasm? State the goals. If there are certain things that you really like, and really don't like sexually, particularly the don't like part. “You know, I know that you're really like doing blankety blank to me, and that's very sweet. Except I can't feel it. I can't feel it.” So, you doing that is awesome. I just want to let you know that like I don't even notice that you're doing. So, FYI. I mean that kind of communication is really valuable. Because then the partner will say “Well, geez, Louise, let me not do that. Let me do something different.” And I think what you'd find is if you have this conversation, it will improve your sex life.   Dr. Aaron Boster (29m 55s): The conversation will lead to a better experience. It really will.   Geoff Allix (30m 1s): And so, we've talked a lot about that there could be nerve damage between brain and sexual organs and that's affecting your ability to have an erection, lubrication, orgasms. But what if a person with MS has physical impediments or a disability? You know, apart from their sexual organs don't work properly.   Dr. Aaron Boster (30m 22s): Yes.   Geoff Allix (30m 22s): How could that affect their sexual life? What could they do about that side of things?   Dr. Aaron Boster (30m 30s): So that involves playing smarter, not harder. Let me give you an example. If we think about a traditional Western missionary position of sex, the guy on top in this like, misogynist example, I apologize. It's kind of doing push-ups, right? Which is a tremendous amount of physical activity, keeping the core body strong and the arms, it's a lot. So that might not be feasible for someone. Right? Now, instead, install in your bedroom an eye hook in the ceiling beam, and install a sex sling. The whole world changes now. You place a partner on a sex sling, you can move them around, spin them, pivot them, push them, thrust, move, up, down, left, right, and it takes almost no effort, right.   Dr. Aaron Boster (31m 20s): And so, by changing from good old-fashioned force of will to using something like leveraging a sex sling, or using a wedge, they make these awesome wedges, which is kind of like bringing a gymnastics room into your bedroom. Where you can position a partner on a wedge. If you have problems in certain positions, again, this goes back to the talking about planning, don't do those things. And if other positions are more successful, do those things. Let's use another example of bowel and bladder issues. Very common. Someone has such fear of incontinence of urine or stool, they will not have sex, which is a travesty.   Dr. Aaron Boster (32m 3s): So, what can you do instead? You can, if necessary, do an inner in self cath, and empty your bladder completely, 100% guaranteed prior to intercourse. If you are prone to urinary tract infections, have your neurologist give you antibiotics that you take before or after sex, alright? If you are having trouble with constipation, you can spend a day or two pre-sex emptying out and getting completely evacuated. Even if that involves an or you know, digital rectal stimuli, or whatever is necessary, you can prepare for that. Do you see what I mean? There's a bunch of things that we can do. You have dyspareunia, which is a terrible word.   Dr. Aaron Boster (32m 47s): It means pain with sexual sensation. So, the act of sex hurts. We have to look into, why you have dyspareunia? If it's because of spasms of the vaginal canal, we might use a rectal suppository of valium before intercourse. If it's because of neuropathic pain and burning sensation, we might use a numbing cream. Right? My point here, is if we can identify -- because in my mind what you're saying those are all secondary sexual dysfunctions. If we identify what the problem is, we can game out how to make it better. Then if you remember nothing from my answer, I simply want you to remember sex swing.   Dr. Aaron Boster (33m 28s): Sex swing. Okay.   Geoff Allix (33m 29s): And in the last few years, the amount of research in MS medication has just leapt forward. I mean, it's gone from -- so my father had MS. There are no real treatments. When I first was diagnosed. Not really, like what? Five years ago? There were treatments then but there must be 4, 5, 6, 10 times that many now. That seems to be it's really escalating. So, are there any treatments going on or studies going on for people with MS, and their ability to have a healthy sexual life?   Dr. Aaron Boster (34m 5s): So, in preparation for our discussion, I actually looked this up because I wanted to be able to answer this question if asked. So, yay. And I went, the way I look up information like that is at the clinicaltrials.gov, which is a site for any clinical trial that's registered by the United States government. And there were 125 hits for when I searched for multiple sclerosis sexuality. And I looked through the first 10 or 20. All over the world, France, Turkey, Louisiana, Cleveland. So, there were trials throughout. Now, almost all of these are investigator-initiated trials. You know, so a clinic running a small study.   Dr. Aaron Boster (34m 46s): But my point here is yes, there's a lot going on. Looking at testosterone levels, looking at various pharmacotherapies, looking at behavioral therapies, a lot of stuff. And so, I hope if you're listening to this, it's reassuring to know that clinic doctors and researchers alike recognize this is such a critically important aspect to life that we're investing resources to try to help you make it better.   Geoff Allix (35m 9s): And you mentioned about testosterone. So, getting testosterone checked is that part of blood test?   Dr. Aaron Boster (35m 13s): Yes. So, the way that I do it in clinic is I draw a morning level of testosterone. And the reason it needs to be morning, a gentleman's testosterone is highest in the morning, and it goes down throughout the day. So, if you tested in the evening and have a low value, you don't really know if it's just because of the diurnal, you know, the fact that it drops down. So, you want to get the best most accurate reading. You do that in the morning. You know testosterone level in the morning. I get it on two separate occasions. And if it's low, the total testosterone is low, that's a blood test, then that opens up the opportunity to treat with testosterone. Which in MS helps gentlemen not just with intercourse, not just with erectile function and ejaculation in the bedroom, but it also helps improve cognition, and slow disability progression, and improve fatigue with gentlemen with MS.   Geoff Allix (36m 9s): And is there an equivalent for women with estrogen?   Dr. Aaron Boster (36m 12s): It's not the same rules, interestingly. It's not the same set of variables. And now looking at hormone levels in women is important. And particularly surrounding times of menopause, when we can see an uptick of MS symptoms, and specifically related to intercourse, as I was mentioning with lubrication. So that is relevant, but for a different set of reasons.   Geoff Allix (36m 38s): So, men definitely worth getting checked out on testosterone, but women…?   Dr. Aaron Boster (36m 43s): Not as much. No, I don't routinely check women's testosterone levels in my clinic.   Geoff Allix (36m 49s): Okay, and if, so, if there's one takeaway you could share with the audience, if people are having sexual issues related to MS, what would that be?   Dr. Aaron Boster (36m 57s): That the one takeaway would be to have open communication with your partners and with your clinicians, because there are ways to make it better. We don't have to just accept this is now the new state of affairs. On the contrary, there are plenty of things that we can do. And you're worth it. It's worth exploring and improving because it is such an important aspect of life, that it's not okay, you just to say, "Well, too bad."   Geoff Allix (37m 27s): And there's no reason, I mean, the two of us, I think, are probably beyond wanting to have more children at our age.   Dr. Aaron Boster (37m 35s): Correct.   Geoff Allix (37m 36s): There's no reason that a person can't be fertile as well as…   Dr. Aaron Boster (37m 43s): Oh, absolutely. So, there's a whole separate conversation. But I actually love to come back and talk to you about this. But there's a whole separate conversation about fertility, and pregnancy, and gestation and delivery related to MS. The quick skinny is MS has no bearing on fertility whatsoever. None. And as it relates to our conversation, if you're having intercourse, we need to be thinking about the appropriate use of contraception to avoid unplanned events such as unplanned pregnancies and things like that.   Geoff Allix (38m 17s): And before we wrap up, there's something I wanted to ask you on a completely different tack.   Dr. Aaron Boster (38m 26s): Absolutely.   Geoff Allix (38m 27s): So, just as someone who's got a lot of expertise in this area, and something that is of personal interest. Because of the podcast, I get asked lots about different supplements. So, people say, “Have you tried Coenzyme Q10? Have you tried lion's mane mushroom, St. John's Wort, ginseng, ginkgo biloba?” There's countless things. And some of them, I'm fairly sure, yeah, if your magnesium is low that's, you know, if anything's not off the normal levels, then yeah, absolutely.   Geoff Allix (39m 7s): But there's always someone championing a supplement or other. So firstly, is there a framework that you would use to decide whether to try a supplement?   Dr. Aaron Boster (39m 18s): That's an awesome question. Thank you for asking me that question. And it's a multi layered answer. So, I have two criteria, if you will. So, the first criteria, there are three things that must be met, if I'm going to greenlight a supplement. The first one is it can't be too expensive. So, each individual family has to decide if the cost of something is too expensive or not for them. And I bring that up because sometimes you may find supplements where it's actually a big chunk of their weekly check, and that's not okay with me. Particularly, if I don't have hardcore science suggesting that I can guarantee it works. So, it can't be too expensive. The second thing is it can't be dangerous.   Dr. Aaron Boster (39m 59s): And sometimes supplements are dangerous. Now, oftentimes, they're not. But let me give you an example. If an immune booster actually boosted your immune system, it would be dangerous to take when you have MS. And, you know, just because it's natural doesn't mean it's safe. I mean, cyanide is natural. So, the second criterion is it can't be dangerous. And sometimes I have to do some investigations, digging through various ingredients to try to answer that question. The third is that it can't be instead of something I know works. So, if you tell me that you want to take CoQ10. CoQ10 is not dangerous. CoQ10 is not generally expensive.   Dr. Aaron Boster (40m 41s): And if you're going to take CoQ10, along with your disease modifying therapy, I have no issues with that. But if you have to take your CoQ10 instead of your disease modifying therapy, where I have good solid scientific evidence that it helps you, now I have an issue. So that's my first criterion. The second criterion is more rigorous in that scientific evidence, you know, properly studied science to prove or disprove that something's helpful. And that second one, you know, we don't have a lot of info. There is some info for some supplements, and I'm going to go over a couple with you right now. But that would be the second one. And you know, it's worthwhile sharing, at least here in United States where I practice.   Dr. Aaron Boster (41m 24s): The supplements and vitamins are not monitored by the American FDA. So, if there's a bottle of a prescription medicine, and it says it does something, they can prove that. It's been proven, it does something or they can't say it. You know, if there's a side effect on the bottle, or a dosage on the bottle, it has to be proven. Like that's not a suggestion, it's a proof. If you bottle a supplement that you get at a health food store, let's say. What they say on it isn't proven. It doesn't have to be proven. So, they could say, for example, it will make you grow 10 feet tall. And they're allowed to say that even if it's not true.   Dr. Aaron Boster (42m 6s): And as a result, it calls into question, and it creates challenges and knowing whether something's okay, but which is kind of I think your point. So, when you look at the evidence, to me, this is a conversation about nutrition, right? And I start with, as we talked about, maybe a little bit earlier, I start with increasing water intake, believe it or not. I think if you're going to change one thing, increasing water is actually more relevant than any other vitamin or mineral or something that we're going to talk about. But that's my first one, honestly. After that, I really would rather spend time talking about healthy eating than I would about supplements. And I would like to engage in a conversation about eating real food, whole food, and avoiding heavy processed foods and the like.   Dr. Aaron Boster (42m 54s): But let's move into some recommendations about vitamins. The first vitamin that I think is actually the most studied with the most evidence for benefit of MS is vitamin D3. And so low levels of vitamin D correlate with increased risk of developing MS. And if you have MS, low levels of vitamin D are correlated with worse outcomes. And so, I routinely check a blood level for vitamin D, and if it's below 50, I supplement. And I use D3, because I feel like it's better absorbed in the human body. And I want to push that level above 40 below 100, or excuse me, above 50 and below 100.   Geoff Allix (43m 32s): So, can I just interject that. Because we measured it in a different way in the UK, and I think Europe. So, it's actually four times the number you're talking about. So, when you say 50, we say 200.   Dr. Aaron Boster (43m 40s): Oh, okay.   Geoff Allix (43m 40s): I don't know why that is just, it's not even an imperial metric thing. It's just because it is exactly –   Dr. Aaron Boster (43m 46s): Thank you for bringing that up. That's a really, really important point. And you know, another important point is you and I, even though we don't live in the same continent, both live in areas where there's not a lot of sun for a good portion of the year. And so, taking a vitamin D supplement is important because we can't get it, you know, the good old-fashioned way. Now, I have through my involvement with Overcoming MS become turned on to the idea that it doesn't take a lot of sun to soak up vitamin D. So, if you go out and let's say shirtless, or, you know, wearing a halter top, or what have you with some exposed skin, for 15 minutes, you'll absorb 5,000 international units of D3.   Dr. Aaron Boster (44m 30s): And now in the winter, Ohio with a foot of snow on the ground very few Ohioans are going to do that. But it is good to know that. Yeah. You know, and during the summer months you certainly do consider that. So, vitamin D3, I think, is very relevant. Past vitamin D3, my next recommendation. And I have to tell you, it's becoming increasingly something that I recommend. I'm on the cusp of recommending it for all people with MS. That's probiotics. So, taking a probiotic is really interesting. And there's an entire fascinating discussion surrounding dysbiosis and the impact of abnormal gut bacteria on the immune system.   Dr. Aaron Boster (45m 16s): Although that's not why I'm recommending it. That's a discussion which is ongoing and still a work in progress. But the reason I'm recommending it is for gut health. People impacted by MS very commonly have significant constipation. And sometimes people with MS have significant diarrhea or incontinence. And so, probiotics pull someone who has constipation more towards the center. And probiotics pull similar diarrhea more towards the center. And so, I really think probiotics are a very, very helpful tool. The next supplement that I would recommend beyond that is added fiber. Because particularly where I practice in the United States, the very low fiber diets, which is a major problem for multiple things, and actually has an impact on MS, in my opinion. And so supplementing fiber, I think is important.   Dr. Aaron Boster (45m 57s): Now, I would like you to do that with pears, plums, apples, and green vegetables but if you can't or aren't able, or don't want to do it that way, you can purchase a supplement like a FiberCon or Metamucil, or what have you, and then you can do it that way. Now, after that, it really depends on the situation. I think it's very reasonable for humans to take a multivitamin because, you know, we're not eating enough salads and vegetables with different colors. But the American diet is normally not devoid of things. It's not typically a problem with excess.   Dr. Aaron Boster (46m 39s): And so, if you just add a multivitamin that kind of covers your bases. Now, I don't recommend mega doses of say, vitamin B12 routinely, or vitamin C routinely, unless there's deficiencies that I'm discovering. So, I'm not a physician that recommends as a priority that you take a B12 complex. Many people do, because it helps with energy in some cases. But I really find that if I'm not, if I can get you to eat a healthy diet, I'm going to take care of that through eggs and other things. Now, there's specifics that are recurrent low dose naltrexone.   Dr. Aaron Boster (47m 21s): You mentioned L-carnitine, things like that. And there's varying levels of evidence for them. Some of maybe the best evidence would be some of, I think L-carnitine has some good evidence for energy. I believe that. I think that helps a lot. I think that's one that I look at. Then when you get into some of the other things, you can find small trials. Turmeric, for example. Low dose naltrexone, for example. And really, I deal those in a one-off fashion where someone's coming to me saying, “Aaron, what about this?” And then together, we kind of look through it. We look at the data if it's in existence, or if it's not, we discuss that. We go through my three criteria and then someone may try it. And here's the important part. If they try it, I want them to tell me what they found.   Dr. Aaron Boster (48m 7s): You know, did it seem to help? Do they notice a difference? When they stopped it, did it get changed in any fashion? And that's anecdotally one of the ways that we have to kind of assess things.   Geoff Allix (48m 20s): Because on the turmeric there are basically no risks, cost is very low, and there's anecdotal evidence, because it's been taken --   Dr. Aaron Boster (48m 36s): Yeah.   Geoff Allix (48m 36s): And it's been used on the Indian subcontinent for centuries or millennia.   Dr. Aaron Boster (48m 39s): And it's delicious.   Geoff Allix (48m 43s): Yeah, that's right.   Dr. Aaron Boster (48m 43s): You know, if someone wants to take turmeric, how about it? That doesn't violate any of the discussions we've had, and it may help.   Geoff Allix (48m 56s): Yeah. And if it doesn't help, you still like the food and carry on.   Dr. Aaron Boster (49m 4s): You know, its still and its still delicious.   Geoff Allix (49m 4s): Yeah. I'll just add, just on a personal level. Because I'm fairly similar to what you're saying. So, I take vitamin D3 every day. I take a probiotic every day. And the other thing I take is - so probiotic gut health. But also, to reduce UTI, so there's something I came across that in Germany, they're routinely prescribed called D-mannose?   Dr. Aaron Boster (49m 25s): Yes.   Geoff Allix (49m 26s): And I found that I, and this may be -- because I think some of these things work in some people and some don't. And it's not expensive. It doesn't have a lot of risks. And so, I thought I'll give it a try. And literally within a week, I didn't have a UTI problem at all. Literally, I don't have UTI problems at all from having D-mannose.   Dr. Aaron Boster (49m 50s): That's fantastic. I think that's a really, really great tip to share with people. And it's what I'm going to think about when I start my clinic tomorrow - about whether or not I'm not recommending D-mannose enough to folks with recurrent urinary tract infections. That's a pro tip. Thank you for sharing that one today.   Geoff Allix (50m 12s): Well, yeah, I mean, but it may just be that worked for me. So, yeah. But then that's the same.   Dr. Aaron Boster (50m 16s): Well, again, it's nice to have a toolbox where we can consider different things. And that's a very good supplement to keep in mind.   Geoff Allix (50m 30s): So, with that, I'd like to thank you very, very much for joining us, and welcome you to the Overcoming MS Board and it's fantastic news. Giving some of your expertise towards the head of the organization. And I thank you for joining us, Aaron Boster.   Dr. Aaron Boster (50m 48s): It's my absolute pleasure. Again, I love talking with you. And I hope that we get to do it again soon.   Geoff Allix (50m 35s): Thank you.   Geoff Allix (Outro) (50m 36s): Thank you for listening to this episode of Living Well with MS. Please check out this episode's show notes at www.overcomingms.org/podcast. You'll find all sorts of useful links and bonus information there. Do you have questions about this episode or ideas about future ones? Email us at podcast@overcomingms.org. We'd love to hear from you. You can also subscribe to the show on your favorite podcast platform, so you never miss an episode. Living Well with MS is kindly supported by a grant from the Happy Charitable Trust. If you'd like to support the Overcoming MS Charity and help to keep our podcast advertising free, you can donate online at www.overcomingms.org/donate.   Geoff Allix (Outro) (51m 22s): Thank you for your support. Living Well with MS is produced by Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity. We are here to help inform, support, and empower everyone affected by MS. To find out more and subscribe to our e-newsletter, please visit our website at www.overcomingms.org. Thanks again for tuning in, and see you next time.    

After experiencing back pain over a few months, Adam went for a simple corrective back surgery. After the surgery went well, he was surprised to be called back to the doctors office two weeks later. At age 39, Adam was diagnosed with Primary Progressive MS. Things would never be the same again. In this riveting episode, Adam, now 52, discusses how the disease has progressed, the mental strength he needs to get though, and what it is like fathering 2 x children despite the adversity he faces every day. Adam is Inspiring, funny, and courageous and thats just for starters!Links from Adam:Website: www.meditationnotmedicine.comPodcast: https://podcasts.apple.com/us/podcast/meditation-not-medicine/id1545374572General:MS Association: https://mymsaa.orgWikipedia: https://en.wikipedia.org/wiki/Multiple_sclerosisIncludes a quick Intro from your hosts Luke and Kyle, and a message from our sponsors.The Original Handlebar Jack Ultraportable Bicycle Repair Stand. Use code 'WTFMU' and proceeds will go to www.foodonfoot.orgSupport the show (https://www.buymeacoffee.com/Wtfmupodcast)

Bio:   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 OMS in 2008 and has followed the programme ever since.   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. Helen has never taken medication for her MS and is committed to living well through active self-care.   Questions:   Can you please tell us a bit about yourself, where you’re from, what you do, family, etc. Let’s understand a little bit about your MS journey – when were you diagnosed and how did you initially handle it? When did you discover OMS and why did you decide to follow the program? You’re a member of the OMS community with PPMS – can you shed some light on what PPMS is and what life is like with that specific type of MS? How does the OMS program fit into the realities of someone with PPMS? What are the biggest obstacles to someone with PPMS adopting the program? How do you personally suggest dealing with these obstacles? In your own experience with both PPMS and OMS, how do you measure progress? If you could articulate one specific outcome that five ago, looking forward, you can say you really wanted to achieve and which you’ve now really nailed through adopting OMS, what would that be and why? As someone with PPMS, what can you share with others that have PPMS that motivates or inspires you?   Links:   Follow Helen on Instagram Learn more about Feldenkrais in the UK and globally   Coming up next:   On our final Coffee Break installment for 2020, travel to the UK to meet Alexandra Storey and hear how she’s helping do her part to ensure OMS has a successful outing on Giving Tuesday, all on Living Well with MS Coffee Break #12, which premieres on Monday, November 30, just one day before Giving Tuesday. And to our friends and community members in North America, Happy Thanksgiving!   Don’t miss out:   Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. Don’t be shy – if you like the program, leave a review on Apple Podcasts or wherever you tune into the show.

Shannon's father has Primary-Progressive MS. He was diagnosed in 1994.  A year ago, 20-year-old Shannon became a 1:1 Peer Support Mentor. She knew this was the perfect opportunity to connect with people her own age to talk about the struggles in having a parent with MS.  Guest: To contact Shannon on Instagram @shannon_bird_ Contact: Host Andrea Dunn @TeamDunner on Twitter, Instagram and Facebook For more information on the MS Society of Canada @mssocietycanada The 1:1 Peer Support Program is for individuals living with MS, for caregivers and loved ones of people with MS https://mssociety.ca/support-services/ms-peer-support-program See omnystudio.com/listener for privacy information.

We discuss the most aggressive form of MS known as PPMS or Primary-Progressive MS. Jamie was diagnosed with PPMS just two years ago. His Doctors are amazed he is still walking. His story is one of perseverance and he’s an inspiration to us all. Thanks Jamie for being so open about your day-to-day struggles with MS. Your story gives hope to those in their battle with the disease. Keep fighting the good fight! Guest: To contact Jamie email jshann902@gmail.com Contact: Host Andrea Dunn @TeamDunner For more information on the MS Society of Canada @MSSocietyCanada For more details on Ocrevus, speak to your healthcare provider and have them contact COMPASS™ for enrollment instructions by calling 1-888-334-5956. See omnystudio.com/listener for privacy information.

This is the 2nd part to this interview. Holly is a young person with Primary Progressive MS. Her diagnosis story is one of frustration. She was aged 24 at her eventual diagnosis but she had to go to her Doctor 3 times and kept being told ‘there's nothing wrong with you'. Prof. Giovannoni from St. Barts in London is her consultant for Disease Modifying Drugs - Ocrevus. She has only had 2 x half infusions and has seen some slight improvement in walking and bowel function. The future looks positive and Holly has started looking after herself and putting herself first for the first time in her life.   Copyright: Bron Webster 2020 More episodes available at: https://themsshow.libsyn.com/

Holly is a young person with Primary Progressive MS. Her diagnosis story is one of frustration. She was aged 24 at her eventual diagnosis but she had to go to her Doctor 3 times and kept being told ‘there's nothing wrong with you'. Using some great advice from her Personal Trainer, Holly was eventually sent by her Doctor to hospital. Several MRI scans later, one using contrast dye, the diagnosis became clearer.  “If it was a female consultant it might have been a bit different” We talk about Holly learning how to self-catheterise and also clear out her bowels - because with Multiple Sclerosis these things are common, but not easily spoken about. “I look at the smaller picture … I look at each day rather than getting through a month” “If I went to part-time, that's me letting the MS win”   Initially, she was diagnosed with demyelination and was told that because of the ‘single' event it could not be classed as ‘multiple sclerosis'. This changed after further scans. The MS Society asked Holly to help in the Parliamentary campaign to gain approval for Ocrevus (the only Disease Modifying drug presently available for Primary Progressive MS.     Copyright Bron Webster 2020

The 2nd part of Rachael's story. Having just received a diagnosis of Primary Progressive MS (PPMS) - Rachael, now aged 53, answers the question “How is life with Primary Progressive MS?”After coming to terms with losing her job, stopping swimming and struggling to watch live Rugby League.   You can find Rachael here: Rachael Tomlinson Accessible Rach Twitter Facebook Instagram     Copyright: Bron Webster 2020

This episode is the fifth part of our international series where Kathy talks to MS’ers from around the world, to see how their diagnosis and treatment experiences differ from in the U.S. Today's guest is Col Chandler,a surfer, artist, entrepreneur and energetic MS Ambassador from Queensland, Australia, who was diagnosed in 2014. Col is relentlessly positive, seeing his diagnosis with Primary Progressive MS as an opportunity for change, not necessarily for diminishment. Topics covered include: Col's initial symptoms and eventual diagnosis with Primary Progressive MS The support he received in hospital post-diagnosis in both Private and Public health schemes The importance of exercise and Zen meditation The changes to Col's life goals following his diagnosis Col's decision to step away from his own business in the technology sector to concentrate on his art Resources mentioned in this episode (clickable links): Col's website, including his artwork and blog A Facebook page for Col's artwork Col's profile on the MS Queensland website ** Sign up for the FUMS Friday Night 6 Pack at FUMSnow.com. And for more information about Patients Getting Paid, get on the email list at  FUMSnow.com/PatientsGettingPaid. **If you get value from the FUMSnow Podcast Show, please consider leaving a rating or review wherever you get your podcasts. Reviews are really important and help to spread the word about what we do. It’s quick and easy to do and we have some instructions here. Thanks for your time and support! **Don’t forget to join us on the FUMS Facebook Page and on Twitter at FUMS. Have an idea for a topic or someone to interview? Perhaps YOU?? Send me an email at Kathy@FUMSnow.com. And remember to speak to this stupid disease as it deserves: tell it FUMS every day!!

March 28th is Progressive MS Day. While only about 15% of the people diagnosed with MS are initially given a diagnosis of Primary Progressive MS, about 65% of the people who are diagnosed with relapsing-remitting MS will eventually develop Secondary Progressive MS. And the difference between progressive MS and relapsing-remitting MS is that, usually, people diagnosed with Progressive MS don't experience any remission in their disease progression. Their MS just seems to worsen more steadily over time.   And while we have more than a dozen approved disease-modifying therapies for relapsing-remitting MS, we have just one approved disease-modifying therapy for progressive MS. So using Progressive MS Day to highlight the need for more research, more treatments, and more attention to be paid to this less popular but more devastating MS sub-type is important.     My guest on the podcast is Kevin Reid, who was diagnosed with relapsing-remitting MS in 2002, and is now living with progressive MS. We'll get Kevin's thoughts about Progressive MS Day and hear about his very successful efforts as an MS Warrior.   We're also talking about a stem cell clinical trial aimed at progressive MS (the National MS Society has invested $1 million in this clinical trial), why neurologists don't seem to be following the recommended guidelines for treating older people living with progressive MS, you'll hear about a couple of excellent MS Association of America webinars and podcasts that focus on the impact of MS on families, and a global webcast that's being hosted by the MS International Federation, featuring some of the top progressive MS experts in the world -- it's a webcast that you won't want to miss.   We have a lot to talk about! Are you ready for RealTalk MS?!   ___________ Progressive MS Day  1:45 MSAA Webinars & Podcasts Focus on Impact of MS on Families  4:31 Neurologists Aren't Following One Particular MS Treatment Guideline  6:10 National MS Society Funds New Clinical Trial Using Individuals' Own Stem Cells to Treat Progressive MS  9:31 In Global Webcast, Top Experts Will Discuss Solving Progressive MS: Progress Achieved and Hope for the Future 11:09 My Interview with Kevin Reid  14:06 Join the RealTalk MS Conversation  27:11 ___________ ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jonstrum@RealTalkMS.comPhone: (310) 526-2283 ___________ LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Download the RealTalk MS App for iOS Download the RealTalk MS App for Android Give RealTalk MS a Rating & Review Podcast: Exploring Relationships & MS with Miriam Franco, MSW, PsyD, MSCS Webinar: Intimacy & Family Planning with MS with Kimberly Castelo, LMFT, CST, CIIP Webinar: The Partnership of Care: Redefining Caregiver to Care Partner with Megan Weigel, DNP, ARNP-c, MSCN Podcast: Spotlighting Care Partner Needs with Lara Krawchuk, MSW, LCSW, MPH Use and Cost of Disease-Modifying Therapy Between 2008 and 2009: Are Neurologists Adhering to Treatment Guidelines?   National MS Society Funds New Clinical Trial of Individuals' Own Stem Cells to Treat Progressive MS   Solving Progressive MS Global Webcast Registration   Crush MS ___________ Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 83 Hosted By: Jon Strum Guest: Kevin Reid Tags: MS, MultipleSclerosis, MSResearch, mssociety, ProgressiveMS, MSAssociation, MSIF, CrushMS, Stemcells, RealTalkMS

Caregiving carries a lot of challenges. And for some people, it can feel overwhelming. So, what are the things that make being a caregiver for someone living with a chronic illness like MS so challenging?   We're kicking off National Family Caregivers Month with my guest, Dr. Amy Sullivan, Director of Behavioral Medicine, Research and Training at the Mellen Center for Multiple Sclerosis at the Cleveland Clinic, and we're talking about how to best navigate some of the challenges that go along with being a caregiver for someone living with MS.      We're also talking about today's election in the U.S., and what it means for people living MS, the unresolved status of Ocrevus as a treatment for primary progressive MS in the UK, and the fast-tracking of Mavenclad in the UK. We'll tell you about the bus driver who stood up for a man with MS, an insurance company that will fly people to Mexico and pay a cash bonus to buy their MS prescription medication there, and we'll share results from the Embracing Carers International Survey.   We have a lot to talk about! Are you ready for RealTalk MS?! ___________ It's Election Day in the U.S. (and what that means to people living with MS!)  :22 The Bus Driver Who Stood Up for a Man with MS  2:49 An Insurer Will Fly People with MS to Mexico to Buy Their Prescription Drugs  4:00 Ocrevus On Hold for People with Primary Progressive MS in the UK  5:49 Mavenclad Fast-Tracked in the UK  7:59 Embracing Carers Campaign & Can Do MS Announce a New Collaboration   9:42  Embracing Carers International Survey Results  10:52 Interview with Dr. Amy Sullivan  12:55 ___________ LINKSIf your podcast app doesn’t allow you to click on these links, you’ll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Download the RealTalk MS App for iOS Download the RealTalk MS App for Android RealTalk MS Congressional Report Card CanDo-MS Embracing Carers Program Recommendations for Cognitive Screening and Management in Multiple Sclerosis Care Give RealTalk MS a Rating & Review ___________ Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 63 Hosted By: Jon Strum Guest: Dr. Amy Sullivan Tags: MS, MultipleSclerosis, MSActivist, DrAmyBSullivan, ClevelandClinic, Caregiving, Caregiver, Ocrevus, Mavenclad, EMDSerono, EmbracingCarers, CanDoMS, RealTalkMS

We're 2 weeks away from an event that's going to have an impact on every person in the United States who's living with MS...or any other chronic illness. Because in 2 weeks time - on November 6th - an election's taking place, and healthcare is on the ballot. Maybe not directly...maybe not explicitly...but make no mistake, the choices that voters in America make on election day are going to have a huge affect on our access to healthcare, the cost of healthcare, and the protection that exists today for people living with pre-existing conditions.     That's why I'm launching the MS Congressional Report Card. It's an easy way for you to see whether your elected representatives in Congress have supported you and others affected by MS. Every member of Congress has received a letter grade based upon what they did -- or didn't do -- to support people affected by MS. You'll be able to see exactly how well your Representatives and Senators have supported the issues that directly affect you. And then, with that knowledge in hand, you'll be ready to cast your vote on November 6th.    We're also talking with my special guest, MS Activist Karen Jackson, about access issues when it comes to casting your vote. We'll tell you about a documentary film that features a new way of interpreting the many sides of living with MS, a possible predictor of brain atrophy in Progressive MS, a new framework for examining how exercise impacts neuroplasticity, and more!   We have a lot to talk about! Are you ready for RealTalk MS?! ___________ Introducing the RealTalk MS Congressional Report Card  1:50 A New Documentary -- "Seeing MS from the Inside Out"  5:29 Neurofilament Light Chain Level as a Predictor of Brain Atrophy in Progressive MS  8:38 Conceptual Framework Proposed to Examine Role of Exercise in MS  11:00   Interview with MS Activist Karen Jackson  13:15 ___________ LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Download the RealTalk MS App for iOS Download the RealTalk MS App for Android RealTalk MS Congressional Report Card Video: "Seeing MS from the Inside Out" Neurofilament Light Levels in the Blood of Patients with Secondary Progressive MS are Higher than in Primary Progressive MS and May Predict Brain Atrophy In Both MS Subtypes Integrative CNS Plasticity with Exercise in MS: The PRIMERS (Processing, Integration of Multisensory Exercise-Related Stimuli) Conceptual Framework   Give RealTalk MS a Rating & Review ___________ Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 61 Hosted By: Jon Strum Guest: Karen Jackson Tags: MS, MultipleSclerosis, MSActivist, MSInsideOut, KesslerFdn, RealTalkMS

I spent this past weekend attending the iConquer MS Leadership Summit in Boston. iConquer MS is a people-powered research network created by the Accelerated Cure Project for MS. Instead of just asking people with MS to provide data, iConquer MS is driven by people living with MS, and it represents a new paradigm of building collaborative partnerships to solve big healthcare questions. This past spring, I had an in-depth conversation with Dr. Robert McBurney, CEO of the Accelerated Cure Project for MS, and David Gwynne, who heads up their Alliances & Collaborations. We'll revisit that conversation, and I'll also give you my thoughts on the remarkable iConquer MS Leadership Summit. We're also talking about the shocking decision in the UK to withhold Ocrevus as a treatment for Primary Progressive MS, the MS In America 2017 survey results, and I'll tell you about a couple of excellent webinars that you should be sure to check out. We have a lot to talk about! Are you ready for RealTalk MS? ___________ NICE Rejects Ocrevus for PPMS in the UK  1:06 MS In America Survey Results Provide Surprising Insights  4:20 Upcoming Webinars from Can-Do MS  7:40 iConquer MS Leadership Summit  9:49 Interview with Dr. Robert McBurney & David Gwynne  13:09 ___________ LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes at www.RealTalkMS.com Petition to Make Ocrevus Available for People with PPMS in the UK Relapse Prevalence, Symptoms, and Health Care Engagement: Patient Insights from the Multiple Sclerosis in America 2017 Survey Can-Do MS Webinar Series iConquer MS Accelerated Cure Project for MS Give RealTalk MS a Rating & Review ___________ Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 53 Hosted By: Jon Strum Guests: Dr. Robert McBurney & David Gwynne Tags: MS, MultipleSclerosis, Ocrevus, iConquerMS, CanDoMS,  RealTalkMS  

My guest on the podcast is Mitch Sturgeon. Mitch is an award-winning blogger, and with the publication of his book, Enjoying the Ride: Two Generations of Tragedy and Triumph, Mitch is a published author, as well. In 2001, Mitch was diagnosed with Primary Progressive MS. He was 35 years old at the time, and that was the same age that Mitch's mother was when she took a fall that left her a quadriplegic.   Mitch's book is more than just a reflection of his MS journey. It's a story about a family with all of the quirks, idiosyncrasies, strengths, and faults that any family might have...and how they lived through and even prospered, in the face of tragic circumstances.   We're also talking about what it means to transition from caregiver to advocate. We'll talk about the concept of cognitive reserve and its relationship to MS disability and depression. And we'll share the latest statistical evidence that makes the case for identifying a reliable biomarker for MS disease progression. We have a lot to talk about! Are you ready for RealTalk MS? ___________ Transitioning from Caregiver to Advocate  1:11 Cognitive Reserve, Disability & MS Depression  10:21 Neurofilament Light Chain As a Reliable Biomarker for MS Disease Activity  13:09   Interview with Mitch Sturgeon  16:17 ___________ LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes at www.RealTalkMS.com   Cognitive Reserve Attenuates the Effect of Disability on Depression in Multiple Sclerosis Neurofilament Light Chain as a Biological Marker for Multiple Sclerosis: A Meta-Analysis Study Enjoying the Ride: Two Generations of Tragedy and Triumph (Book) Enjoying the Ride (Blog) Give RealTalk MS a Rating & Review ___________ Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 52 Hosted By: Jon Strum Guest: Mitch Sturgeon Tags: MS, MultipleSclerosis, MSResearch, Caregiving, CognitiveReserve, NeruofilamentLight, Enjoying_Ride, RealTalkMS

Elizabeth Jameson is an artist who specializes in creating a bridge between art and neuroscience. Since being diagnosed with MS, Elizabeth has transformed her brain MRI scans into remarkable and provocative images that challenge how we view the brain, disability, and illness.    In addition to creating her amazing artwork, Elizabeth is an ePatient Scholar and advisor to Stanford Medicine X, and she's written extensively about patient-centered healthcare, design, and the arts.   This week, we're standing at the intersection of art and science with my special guest, Elizabeth Jameson, talking about being an ePatient, embracing our imperfect bodies, and the importance of developing a creative narrative about living with MS. We're also talking about a new theory on the cause of MS, how artificial intelligence may change medical imaging to better detect MS, and how one doctor used a bogus MS treatment to cheat his MS patients and their insurance companies out of thousands of dollars. We have a lot to talk about! Are you ready for RealTalk MS? ___________ Researchers Offer a New Theory on the Cause OF MS  :50 Australian Government Invests in AI Imaging Technique to Better Detect MS  5:54 A Doctor's Bogus MS Treatment Scams MS Patients and Their Insurance Companies  7:45 Market Research Company Recruiting People with Primary Progressive MS to Complete Paid Online Survey  14:19 Interview with Elizabeth Jameson  15:13 ___________ LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes at www.RealTalkMS.com Hypothesis: Multiple Sclerosis Is Caused By Three-Hits, Strictly In Order, In Genetically Susceptible Persons Australian Government Invests in Artificial Intelligence for Medical Imaging California Medical Board Legal Complaint Against Dr. Michael Arlata Jameson Fine Art VIDEO: Elizabeth Jameson at TedxStanford: Learning to Embrace Our Imperfect Bodies Mind On Fire (Elizabeth Jameson's Blog) Share Your Feedback About RealTalk MS Give RealTalk MS a Rating & Review ___________ Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 48 Hosted By: Jon Strum Guest: Elizabeth Jameson Tags: MS, MultipleSclerosis, MSResearch, AI, ElizabethJameson, RealTalkMS

Nancy B. Sayle is a legendary music publicist, teacher & animal rights activist Nancy B. Sayle is a 30 year veteran of the music industry. Her clients have ranged from Rob Zombie, Marky Ramone to YES, Steve Vai, and many others. In 2009 Nancy was diagnosed with Primary Progressive MS. Since her diagnosis she has been facing the challenges of living with a catastrophic illness which robbed her of her ability to maintain an active lifestyle. This challenge, however, lit a fire within her to raise awareness about MS and the importance of the quality of life for others. With the love and support of her family, friends and clients Nancy held the first ever Rock Against MS Concert and founded the Rock Against Multiple Sclerosis Foundation. Today Nancy is an MS warrior and advocate for living a quality life with MS. Not long after being diagnosed with cancer and multiple sclerosis, Nancy was at friend's Steve Stevens (Billy Idol) house sharing her prognosis when he decided after 30 years of friendship there had to be something he could do to help. Out of a love of music, entertainment and a desire to support Nancy; Rock Against MS was born. The first annual Rock Against MS benefit show came together in 2013 with 50+ rock stars taking the stage to help raise money for Nancy's mounting medical bills. The inagural sold out Rock Against MS show quickly turned into an annual event garnering performances by artists like Rob Zombie's band, Rick Springfield, Taylor Hawkins and his band Chevy Metal, Marky Ramone, Glenn Hughes, Orianthi, Billy Idol, and more. Heading into its 5th year, Rock Against MS aims to raise more money to help support the Rock Against MS Foundation's goal of funding a three (3) grant resource system and The Rock House.

Carol Moiso is a fighter!  She was diagnosed with Primary Progressive MS in 1991 when she was 47 years old.  She may be in a wheelchair to get around now but that doesn't stop her from challenging herself to swim across the Columbia river or ride 10 miles during Bike MS.  She's a proud grandma with a great sense of humor and a desire to do everything possible with her grandkids.  So she fights.  Fights her MS symptoms to be the best she can be.