Fums: Giving Multiple Sclerosis The Finger

Informações:

Sinopsis

A podcast providing information, inspiration and motivation for living your best life with Multiple Sclerosis. Join us for interviews with doctors, research scientists, patients, legislators, insurers, neuropsychologists, authors, caregivers, and a long list of others in our pursuit of answers. Learn to speak to this disease as it deserves tell it FUMS everyday!

Episodios

  • FUMS 099 - The Psychology of MS with Dr. Meghan Beier

    08/02/2022 Duración: 22min

    Even without a pandemic, a life with MS can be a lot to deal with. So, many of us will seek help for our mental health at some point. I know from personal experience how frustrating it is to have to explain exactly what MS is whenever I’m speaking to a new mental health therapist. Which is why I’m delighted that today’s guest is working to educate therapists about psychological difficulties that are specific to a variety of chronic illnesses, including MS.Dr. Meghan Beier is a psychologist at Johns Hopkins University School of Medicine who specializes in MS. Her passion for improving care led her to create Find Empathy, which provides continuing education for mental health professionals on how best to serve patients who live with life-altering illnesses. Not only will Find Empathy provide learning for health professionals, but it will also help patients to find a provider with expertise in their particular condition. It’s a win-win for everyone!Full show notes and resources at https://fumsnow.com/fums099/

  • FUMS 098 - HSCT and Life and Death Choices with Jenny Angus

    25/01/2022 Duración: 45min

    Jenny Angus was very physically active, with a career in property management, when what she calls the Poltergeist took up residence in her life. Originally misdiagnosed in 2004, it took 10 years before she received her correct diagnosis of MS - during which time her disease had been left to run unchecked. Along the way, she had to stop her artistic career, which was so closely tied up with her identity. Jenny's story is a difficult one. She has investigated assisted dying, an arduous process that is legal in Canada. But with the help of her friends, family, and countless strangers, she is having HSCT (haematopoietic stem cell transplantation), an intense chemotherapy treatment for MS, in Mexico in January 2022.Recently she has been helping others through her patient advocacy work, and she is planning on blogging (and vlogging!) through her HSCT treatment.Full show notes and resources at https://fumsnow.com/fums098/

  • FUMS 097 - Giving the Finger to Primary Progressive MS with Adam Powell

    11/01/2022 Duración: 39min

    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/

  • FUMS 096 - Let’s Talk About Sex (Differences), Baby w/Dr. Rhonda Voskuhl

    28/12/2021 Duración: 36min

    It is a truth universally acknowledged that women are up to three times more susceptible to developing MS than men. But men are more likely to have worse outcomes than women, as far as disability accumulation is concerned.We know it to be true - anecdotally, at least. But have you ever wondered why? Well, my guest certainly has.Dr. Rhonda Voskuhl is the Director of the UCLA MS Program, holds the Jack H. Skirball Chair in MS, and is a Professor in the UCLA Department of Neurology. She has received national and international awards for her research and sees MS patients in the neurology clinic, mentoring at the faculty, postdoctoral, graduate, and undergraduate levels.Full show notes and resources at https://fumsnow.com/fums096/

  • FUMS 095 - The Patient Movement Rises UP with Terry Wilcox

    14/12/2021 Duración: 43min

    It used to be the case that, if you were a person who had a chronic condition or a disability, you didn't have much of a voice. In fact, the idea that the patient was any kind of expert in their own health was just unthinkable! But with the rise of social media and patient advocacy, we are no longer satisfied with being the person to whom healthcare just happens.We all know that the struggle is real, and seemingly endless. But my guest today is someone who has dedicated her life to helping patients find their voice and become outspoken advocates for their health careAs the Co-founder and Executive Director of Patients Rising, Terry Wilcox has a track record of building coalitions with patients, caregivers, and medical professionals. She manages all of the day-to-day operations for the organization and is the visionary behind all of Patients Rising's programs, which include education, support, research, and the policy and advocacy work of Patients Rising Now.There's plenty in my wide-ranging cha

  • FUMS 094 - The National MS Society's MS Navigators Program

    30/11/2021 Duración: 19min

    For most of us in the US, when we join the lucky MS'ers club, the first place we turn is likely to be the National Multiple Sclerosis Society.The National MS Society's vision is a world free of MS - something which we can all get behind! But while the bastard refuses to die, they also focus on ensuring that people affected by MS can live their best lives.One of the ways in which they do this is the MS Navigator program. The Navigators exist to connect you with the help you need, wherever and whenever you need it.To tell us more, my guest today is Allison Krehbiel, the Director of MS Navigator Services Delivery. Allison provides leadership to the nationwide team of MS Navigators who receive direct referrals from healthcare providers - utilizing the power of collaboration to improve client outcomes.Allison has been with the National MS Society since 2005 when she started as a contracted Case Manager. She received her Masters in Social Work from the University of Washington and has a certificate in non

  • FUMS 093 - Eating Healthy Over The Holidays with Alene Brennan

    16/11/2021 Duración: 39min

    As the song says, it’s the most wonderful time of the year! And many of us traditionally mark the season - and please know that the FUMS Podcast is a no-shame space - by giving up on eating and living in a healthier way. But increasingly, many of us living with MS and related chronic conditions are managing our health through nutrition and lifestyle. So how do we keep this up without missing our family traditions?Luckily, Functional Nutrition Counselor and Chef Alene Brennan is on-hand to show us the way.Alene knows first-hand what it’s like to live, and rise above, a chronic illness and debilitating migraines. Following her diagnosis with Multiple Sclerosis in 2016, she now coaches individuals from around the world to manage autoimmune disease through diet and lifestyle.Listen in as she shows us that we don't have to compromise our healthy habits during the holidays to enjoy this special season.Topics covered in this episode include:Why Alene feels that it’s important to focus on what’s manageable for y

  • FUMS 092 - Music Therapy For MS with Dr. Cindybet Pérez

    02/11/2021 Duración: 53min

    If you're anything like me, music is a big part of your life. It can lift me up, it can wipe me out, but it's always there. And you'll likely also have seen incredible videos which show people with Dementia or Alzheimer's responding to music when they otherwise are non-responsive.But did you ever think that music could make a difference to the health of people with MS? Dr. Cindybet Pérez is a board-certified clinical and neurological music therapist practicing in Puerto Rico. A faculty member at the Pontifical Catholic University, she also participated in a national-level project specially designed to promote health and wellness through evidence-based interventions for MS patients called MS in Harmony.In our fascinating conversation, Dr. Cindybet talks about how music therapy can help MS patients cope with their diagnosis, becoming another potential weapon in our arsenal - not simply lifting our mood but improving our movement and memory!Topics covered in this episode include:How Dr. Cindy

  • FUMS 091 - Move It Or Lose It with MS Specialist Fitness Trainer Kathy Chester

    19/10/2021 Duración: 43min

    “Which part of our body are you ok with losing?” - this is the question that fitness trainer Kathy Chester will sometimes ask her clients.Prior to opening Disrupt Fitness Gym, Kathy had been a leader in the fitness industry for almost a decade. However, it wasn’t until she was diagnosed with Multiple Sclerosis that she decided the time had come to take it to the next level.   Having MS while being an instructor has allowed Kathy to not only push past places she'd been told she would never physically reach but has provided her with the gift of offering encouragement while working through different adversities with her clients.And why did she choose the name “Disrupt” for her gym? Well, that’s because she’s disrupting the idea of what we can and cannot do with MS and related autoimmune conditions. In other words, she says FUMS every day!Topics covered in this episode include:How Kathy relished speaking to groups in her former life as the wife of a pastor - and why she used humor to cover her initial MS sym

  • FUMS 090 - Heat Intolerance and Exercise with MS Specialist Dr. Gretchen Hawley

    05/10/2021 Duración: 37min

    It’s a third-time visit for MS-specialist Physical Therapist Dr. Gretchen Hawley. She began treating people with Multiple Sclerosis during her first year of professional practice. The positive results she saw in her patients led her to specialize in the treatment of MS, taking every opportunity to attend workshops and conferences dedicated to improving lives through Physical Therapy.She has previously appeared to talk about the benefits of PT for People with MS, and the launch of her online MSing Link wellness program - which coincided with the global COVID-19 shutdown. I’ve been hearing her name mentioned in lots of MS-related areas recently, so she’s back to talk about all the exciting things she’s working on now - including the launch of her own podcast, and a FREE 5 Day MS Strength Challenge!How Dr. Gretchen’s online MSing Link Wellness program has helped people all over the world - and the importance of accountability as an aid to achieving health goalsWhy heat intolerance affects so many people with MS

  • FUMS 089 - MS, COVID-19 Vaccines, and the Booster Shot with Dr. Brandon Beaber

    21/09/2021 Duración: 39min

    Well, COVID-19 doesn't seem to be going away anytime soon, does it? You had questions about the COVID-19 vaccines and booster shot and Dr. Beaber had answers.Dr. Brandon Beaber is a board-certified neurologist with subspecialty training in multiple sclerosis and other immunological diseases of the nervous system. He posts new videos about MS on YouTube every Wednesday AND he has written a book that features amazing stories and practical advice to enable people to develop resilience as they live with MS.In my conversation with Dr. Beaber, we also talk about diet, exercise, and the potential benefits of dirt!Topics covered in this episode include:COVID-19 and MS - Are people with MS more at risk or are we better protected than the 'normals'? How do the various vaccines interact with MS DMTs?What Dr. Beaber thinks MSers should do about receiving COVID booster shots  Dr. Beaber's thoughts about the numerous diets which are supposed to help MSers - and his cautious recommendationsWhy exposing y

  • FUMS 088 - Psychedelic Experiences, Frogs, and MS - with Neurobiologist Caitlin Thompson

    07/09/2021 Duración: 36min

    I, like many of us, have been watching with interest the current research into the potential benefits of psychedelics in the treatment of depression - because, obviously, depression is pretty common when you're dealing with a life-changing MS diagnosis!Maybe like me, you asked yourself, "Hmmm. I wonder if anyone has been looking into its potential usage for chronic illnesses like MS?"Well, guess what?!Neurobiologist Caitlin Thompson is an independent scientific researcher studying the potential of psychedelic compounds as a novel approach to the treatment of autoimmune conditions. During her healing process from Lyme disease, chronic fatigue, PTSD, pain, and a plethora of other autoimmune symptoms, Caitlin became fascinated with the potential of using psychedelic substances to treat and relieve autoimmune and chronic health conditions. She is also an active practitioner and educator of Kambo, a traditional Amazonian medicine.Please noteIt should be noted that much of the research so far is anec

  • FUMS 087 - Let's Talk About Sex - and MS - with Dr. Fred Foley

    24/08/2021 Duración: 39min

    There are countless ways that MS can MesS with your life. But one of the most infuriating, most common, and most difficult to talk about, is sexual dysfunction. Obviously, this is something that can affect anyone. But a shocking 80% of people with MS report having sexual concerns or issues. The symptoms can include loss of sensation to an inability to climax, and the causes can run the whole gamut from depression, poor body image, and medications to treat your MS and associated conditions.So Dr. Fred Foley is here to help you bring your sexy back!Dr. Foley is Professor of Psychology at Yeshiva University, in the Bronx, NY, and the Director of Neuropsychology and Psychosocial Research at the Multiple Sclerosis Center at Holy Name Medical Center in Teaneck, NJ. The most important thing to learn from this podcast is that there are lots of ways you can still get busy and get happy! But the key is communication - with your partner, your doctor, and healthcare professionals. So Dr. Fred also offers guidance on how

  • FUMS 086 - Funny Shit About MS with Comedian Shari Short

    10/08/2021 Duración: 48min

    If you’ve been following us for any amount of time, you’ll know that we always give a big FU to MS (the clue’s in the name!) And even though we’ll have our ups and downs, we try to inject a little humor along the way.Now, we know that MS is NO JOKE. But if you allow yourself to see the funny side of it occasionally, it can help with getting through the day-to-day.My guest this week is Shari Short, a comedian, writer and, naturally, a developmental psychologist working in healthcare communications. Since her MS diagnosis in 2008, Shari has used humor to deal with MS, communicate about MS and cope with MS - and she thinks that you might benefit from doing the same. Topics covered in this episode include:The story of Shari’s MS diagnosis and and her experiences of injecting her first MS DMTHow she got into comedy and where it fits into her lifeWhy Shari thinks that humor was helpful in her diagnosis and continues to be in her life with MSHer first experiences doing standup and how she manages her symptoms when p

  • FUMS 085 - Amber Tuma Talks About MS & Her Rock & Roll Lifestyle

    27/07/2021 Duración: 22min

    Amber Tuma was studying for her music degree in Texas and raising two kids with her husband when MS reared its ugly head. So she says FU to MS by continuing to write and play music with her band The Gallows Crow.Hear the inspirational story of how Amber refuses to let MS get in the way of how she lives her life. Go, Amber!Topics covered in this episode include:Amber’s life pre- her MS diagnosisThe story of her initial symptoms, her quick diagnosis, and an unknown link to MS  How Amber handles the emotional and physical stresses of playing music, including the story of the gig she played shortly after her diagnosisHow Amber’s friends and family members have responded to her diagnosisAmber’s aspirations, and plans to write a song about MSResources for this episode (clickable links):Visit The Gallows Crow and follow them on Instagram and FacebookListen to Kathy’s song, Wash Your Mouth Out With HopeHelp keep FUMS alive at the FUMS Podcast Patreon page - or buy FUMS MerchSign up for the Patients Getting Paid cours

  • FUMS 084 - Run A Myelin My Shoes with Cheryl Hile

    13/07/2021 Duración: 20min

    When Cheryl Hile’s neurologist told her to “lower her expectations”, the marathon runner showed that she was an FUMS’er to her core. Adopting the mantra “I do what I can and never give up”, she has now completed 56 (FIFTY-SIX!!!) marathons, 41 following her diagnosis.After running 7 marathons on 7 continents in 12 months, Cheryl founded the running and walking team Run A Myelin My Shoes to challenge the perception that strenuous exercise is bad for MS.Listen in as I chat with this amazing MS Warrior and even get strong-armed into taking part in the 2021 event!Topics covered in this episode include:Cheryl’s pre-MS life including running marathons on vacation with her husbandHer first MS symptoms and THAT neurologist conversationHow she founded Run A Myelin My Shoes after meeting MSers who ran or wanted to runWhy you don’t have to run to get involved with Run A Myelin My Shoes!Details of how you can get involved with the 2021 event, regardless of where you liveResources for this episode (clickable links):Visit

  • FUMS 083 - Don’t Just Survive - THRIVE! with Jen DeTracey

    29/06/2021 Duración: 40min

    I’m sure that all of us can agree that MS sucks for a lot of the time. But having an FUMS attitude means not just surviving with MS - but THRIVING!Jen DeTracey is a certified coach and the founder of Women Thriving with MS. In 2010, Jen was a successful consultant and professional speaker when, during a speaking tour, she found she could barely walk, write or smile. 48 hours later she was diagnosed with Multiple Sclerosis. At that time, she thought she would never be able to work again.Jen has been living with MS for over 10 years and has now discovered how to thrive. And now she’s guiding women on how to empower themselves to live life better with MS. Listen in to find out how!Topics covered in this episode include:What Jen was doing prior to her diagnosis with MS - in her career and private lifeThe story of Jen’s early symptoms and MS diagnosisHer post-diagnosis struggles with mental healthHow an insurance policy empowered Jen to make a change in her careerWhy Jen started her Women Thriving with MS programD

  • FUMS 082 - The Natural Way to MS Health with Naturopath Elizabeth Yarnell

    15/06/2021 Duración: 32min

    I hear from a lot of people with MS who have had success in treating their condition with Naturopathy and adopting an anti-inflammatory diet. So who better to talk to about this than a renowned Naturopath who also has MS?Since being diagnosed with multiple sclerosis at age 30, Elizabeth Yarnell has spent the past 20 years studying how to manage autoimmunity naturally as a traditional naturopath. Her focus is on how anti-inflammatory therapies can influence the course of MS.Through her work with hundreds of people with MS and other autoimmune conditions, Elizabeth’s personalized natural therapies have helped them slow or even reverse the course of their disease. Topics covered in this episode include:Elizabeth’s diagnosis story - and why she chose to explore natural therapiesWhat exactly is a naturopath? The tests which Elizabeth uses to find each patient’s personal inflammatory triggers - and those tests which you should avoidThe links between inflammation and digestive issuesElizabeth’s three-pronged approac

  • FUMS 081 - Butts, Guts, and MS with Neurogastroenterologist Dr. David Levinthal

    01/06/2021 Duración: 36min

    As part of the rich buffet of joy that MS lays out for us, problems with your gut and pooping have to be right at the top of the charts - or the shit-list, if you will.Just to state it for the record, not everyone with MS will have these issues - as we know, MS isn’t a one-size-fits-all deal. But it is something that a lot of people deal with, which is why we’re covering it here.So my guest today is Dr. David Levinthal, the Director of the Neurogastroenterology and Motility Center at the University of Pittsburgh Medical Centre. Dr. Levinthal got his doctorate in Neuroscience and has a particular interest in functional and motility disorders of the GI tract, and GI symptoms that arise in the context of neurological disorders, including MS.So as far as gut issues and MS are concerned, it’s safe to say that he knows his shit! Topics covered in this episode include:What are the GI issues which commonly affect people with MS? How neural circuitry interacts with the gutWhy are these issues overrepresented in people

  • FUMS 080 - Your Doctor Is Your Employee

    18/05/2021 Duración: 18min

    In my life, I spend a lot of time in various MS-related spaces. Having a community that understands what I’m going through, and where I can offer support, is one of the blessings in my life.But even with all of that, there are still things about these spaces which concern me. So in this solo episode, I’m getting a few things off my chest! And in all of this, I’m not trying to cause offense. I’m just saying that you should value your own health, so be careful where you get your medical advice! As always, I’d love to know your thoughts on this subject.Topics covered in this episode include:My MS bona-fides! AKA I know what I’m talking aboutThe problem I have with how some people are using online MS-related groups The real value of these groups, what they’re good for… and what they’re NOTMy current issues with the US healthcare systemDon’t be intimidated by your medical team - hold their feet to the fire! Resources for this episode (clickable links):Visit Healthline’s Living with MS Facebook pageGet Healthline’s

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