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

January 25, 2022 - 46 MIN

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

iosspotify
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 diagno.. Read More
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/
Read Less
January 11, 2022 - 40 MIN

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

iosspotify
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, comb.. Read More
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/
Read Less
December 28, 2021 - 37 MIN

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

iosspotify
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 i.. Read More
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/
Read Less
December 14, 2021 - 44 MIN

FUMS 095 - The Patient Movement Rises UP with Terry Wilcox

iosspotify
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 w.. Read More
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 care As 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 chat with Terry to get you fired-up but there's also a TON of inspiration that you can carry forward into your life that can help you to advocate for yourself and your condition. As Terry says, it's all about building relationships! Topics covered in this episode include:How Terry was first inspired to work in patient advocacyThe current state of various healthcare bills, including the various bills under discussion in congressWhy most advocacy groups stay away from talking about pharma or medication pricesThe good news that Terry has seen, and what YOU can do to effect change!Why healthcare should be a non-partisan issue Information about the various programs available through Patient Rising Full show notes and resources at https://fumsnow.com/fums095/
Read Less
November 30, 2021 - 20 MIN

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

iosspotify
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 b.. Read More
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-profit management and in Diversity, Equity, and Inclusion. Topics covered in this episode include:The reasons why the program was startedDo the Navigators need to have a connection to MS?Examples of the different ways in which the program can help people with MS - including disability benefits and employment issuesThe training which is involved for NavigatorsHow to connect with the MS Navigator program Full show notes and resources at https://fumsnow.com/fums094/
Read Less

Hosted By:

Kathy Reagan Young