FUMS is 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” every day!

Episodes

June 14, 2022 - 18 MIN

FUMS 108 - A Cause for MS Has Been Found

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In January of 2022, one of the biggest MS news stories EVER was announced - that MS is probably caused by infection with the Epstein-Barr virus (EBV), according to a study led by Harvard T.H. Chan School of Public Health researchers... Read More
In January of 2022, one of the biggest MS news stories EVER was announced - that MS is probably caused by infection with the Epstein-Barr virus (EBV), according to a study led by Harvard T.H. Chan School of Public Health researchers. Now, this link has long been suspected but here was proof! My guest today is Kjetil Bjornevik, the lead author of the publication that got us all excited. Kjetil is an epidemiologist whose focus is on finding risk factors and better treatments for neurological diseases, including multiple sclerosis. As you'll hear, by opening the doors for future preventative treatments for EBV (one of which is in a Phase 1 clinical trial right now), this report points towards a way to prevent MS and the real possibility of a CURE. Topics covered in this episode include:What led Kjetil to specialize in neurological diseases in general and multiple sclerosis in particularA breakdown of the study and its findingsEBV is one possible (but important) trigger of MS - what are the others?The possibility of an EBV vaccine and the effect this would have on people at risk of developing MSFuture research at the Harvard T.H. Chan School of Public Health that is of interest to the FUMS community Full show notes and resources at https://fumsnow.com/fums108/ 
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May 31, 2022 - 47 MIN

FUMS 107 - MS Advocate Jenna Green

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Jenna Green worked for 15 yrs in corporate marketing, when she realized that she had to leave for the sake of her mental health! So she began working freelance - but the hustle culture, combined with chronic pain she experienced foll.. Read More
Jenna Green worked for 15 yrs in corporate marketing, when she realized that she had to leave for the sake of her mental health! So she began working freelance - but the hustle culture, combined with chronic pain she experienced following a car accident, led her to a diagnosis of Multiple Sclerosis in 2016. On what should have been her first Tysabri infusion, she learned that her insurance wouldn't cover the treatment. This was Jenna's first experience of Step Therapy or Fail First practices - where, in order to control costs, insurance companies restrict coverage of expensive therapies unless patients have already failed treatment with a lower-cost alternative.  And we all know that a failed treatment for MS means more relapses, leading to more irreparable damage, increased disability, and worse outcomes!   Jenna is now a patient advocate, content creator, consultant, and public speaker. She has used her experience in marketing to help bring awareness, support, education, and community to those who live with invisible illnesses, chronic pain, and fatigue, primarily on Instagram @thejennagreen.  AND she's devoted to helping to change public policy via her volunteer work with the MS Society. GO JENNA! Topics covered in this episode include:Jenna's life before her MS diagnosis, and her experience of Step Therapy or Fail First policiesHer belief that privilege equates to responsibilityThe alternative therapies that Jenna uses alongside conventional medicineHow Jenna became an MS advocate, and how this work makes her feelInformation about Jenna's exciting patient resource about Public Speaking For Patient Advocates (coming soon) Full show notes and resources at https://fumsnow.com/fums107/
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May 17, 2022 - 27 MIN

FUMS 106 - Caring for Caregivers with Elizabeth Miller

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If you listen to this podcast, there's a strong chance that you receive care - from a friend, a loved one, or from within your community. You might also be in the position I was in a few years back, caring for elderly relatives, youn.. Read More
If you listen to this podcast, there's a strong chance that you receive care - from a friend, a loved one, or from within your community. You might also be in the position I was in a few years back, caring for elderly relatives, young children, and myself as a person with a chronic illness! My guest today is Elizabeth Miller, a family caregiver, caregiver advocate, speaker, author, podcast host, and Certified Caregiving Consultant. Her personal experiences of caring for aging parents with chronic and terminal illnesses and for a sibling with developmental disabilities inspired her to create Happy Healthy Caregiver in 2015. Elizabeth's aim is to make caregiving sustainable and prevent burnout by encouraging intentional self-care. Like I said, you might be a caregiver or the one receiving care. Regardless, there are some great tips in our conversation for looking after yourself. And please remember that self-care is not selfish! Topics covered in this episode include:The story of Elizabeth's history with caregiving and what her hardest challenges wereHow sharing her story through a blog enabled Elizabeth to help others in the same situationElizabeth's advice for caregivers and the things which helped her to look after herselfChanges that Elizabeth would like to see in the healthcare systemThe services and support that Elizabeth provides through Happy Healthy Caregiver Full show notes and resources at https://fumsnow.com/fums106/
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May 03, 2022 - 27 MIN

FUMS 105 - Finding "Grace" in MS with Novelist Delaney Parker

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"Grace" is a novel about a young woman navigating married life, sex, parenting, and friendship. Plus, the lead character is doing all this while dealing with an MS diagnosis.  It was written by Delaney Parker, an author who lives i.. Read More
"Grace" is a novel about a young woman navigating married life, sex, parenting, and friendship. Plus, the lead character is doing all this while dealing with an MS diagnosis.  It was written by Delaney Parker, an author who lives in upstate New York with her family. She was diagnosed with Multiple Sclerosis in October of 2008, and it was her diagnosis that inspired Delaney to write "Grace." As Delaney says in this interview, the character's diagnosis is just a part of who she is, and the novel is not centered around MS. I loved this book's depiction of a young woman who just happens to have MS, and I can't wait for the sequel! Topics covered in this episode include:Delaney's diagnosis with MS while being a young motherHow her urge to be a writer grew out of a voracious reading habitWhy an MS diagnosis is not the main driver of the plot of "Grace"How sharing this story was helpful to Delaney in her own MS journeyWhere to buy your copy of "Grace" Full show notes and resources at https://fumsnow.com/fums105/
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April 19, 2022 - 35 MIN

FUMS 104 - Trauma and EBV as the Trigger for MS w/Tammy and Terry of Twins Coast 2 Coast

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Identical twins Tamara Kahn and Terry Hord (née Harber) were born eight minutes apart and were both athletic as children. But they can now look back and see the fatigue and heat sensitivity they both experienced as early signs of th.. Read More
Identical twins Tamara Kahn and Terry Hord (née Harber) were born eight minutes apart and were both athletic as children. But they can now look back and see the fatigue and heat sensitivity they both experienced as early signs of the diagnosis to come - along with the trauma of losing their mother to cancer and the Epstein-Barr Virus that they contracted at the age of 15. In their 20s they received identical MS diagnoses, but a history of voluntary charity work led them to create an MS patient advocacy hub called TwinsCoast2Coast. They aim to inspire, empower, support, and educate others about MS, and to simply tell their story, imperfections and all. Despite the aggressive and progressive nature of MS for them both, they continue to create a support system and safe space for the newly diagnosed to land. As they say in this interview, "there is more to life than your disease - and you are not alone." Full show notes and resources at https://fumsnow.com/fums104/
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Hosted By:

Kathy Reagan Young