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Jul 16 2020 MS Living Well Podcast 13: Taking Charge of Multiple Sclerosis

 

Photo (cropped): Leon Ell’ on Unsplash

Being diagnosed and living with multiple sclerosis is often overwhelming. Your MS journey might be challenging, frustrating and depressing at times.  On the bright side, superb MS care is available. This podcast lays out ways that you can take charge of MS and get the care you deserve.  Topics include finding the right neurologist for you and how to get reliable MS information.  Improve your communication with your doctor regarding worsening symptoms, progressive disease, MRI imaging and medication risks.  Making shared decisions regarding treatment with your neurologist highlighted.  If you feel more comfortable sticking with the treatment plan called “adherence,” you will be better off in keeping your MS in check. Financial assistance for treatments, MRI and office visits outlined. Expert information reviewed on diet, vitamin D, smoking, alcohol and exercise.

 


 

 

 

 

Barry Singer MD, Director of The MS Center for Innovations in Care, interviews:

Cathy Chester

Cathy Chester was diagnosed with multiple sclerosis in 1986 and has become a leading national MS patient advocate.  Cathy is a graduate of Boston College with a Bachelor of Arts in English and Business and The Alfus Patient Advocate Certificate Program at The University of Miami.  Cathy’s An Empowered Spirit was named Top Health Blog by Healthline and Top Multiple Sclerosis Blog by Healthline and WEGO Health for several years. Cathy is a regular contributor to MultipleSclerosis.net and Multiple Sclerosis News Today.

Bhupendra Khatri MD

Bhupendra Khatri MD is the founding medical director of the Regional MS Center of the Center for Neurological Disorders in Milwaukee, one of the largest multiple sclerosis centers in the U.S. Dr. Khatri completed his residency in neurology at the Medical College of Wisconsin and fellowship at University of California in San Francisco.  He has been a principal investigator in numerous clinical trials, as well as an invited speaker at both national and international conferences. He has published over 55 papers in peer-reviewed journals and has contributed chapters to six books. In 2015 he was honored with the National Multiple Sclerosis Society Lifetime Achievement Award.  He is an accomplished book author and published the award-winning bestselling book, “Healing the Soul, Unexpected Stories of Courage, Hope and the Power of Mind.”

Jul 2 2020 MS Living Well Podcast 12: Overcoming Multiple Sclerosis Fatigue

Photo: Jen Theodore on Unsplash

Struggling with MS fatigue? You aren’t alone. Approximately 90% of people living with multiple sclerosis deal with fatigue. An overwhelming sense of tiredness can be disruptive at work and take away from your family time and social life. This podcast dives into the different causes of MS fatigue including disease impact on nervous system, medications and poor sleep.  Approaches to improve both mental and motor fatigue are highlighted including energy conservation strategies, exercise and workplace changes.  Fixing sleep issues can substantially help fatigue. Treatment options reviewed for causes of poor sleep including anxiety, restless legs, leg cramps, need to urinate overnight and sleep apnea.  Medication options for MS fatigue are reviewed including amantadine, modafinil, armodafinil and amphetamines.

 

Randy from Must Stop MS!

 

 

Randy from Must Stop MS!  was diagnosed with multiple sclerosis in November 2012.  Initially he was worried about his future: wheelchair? providing for his family?  Knowing how he felt after the diagnosis led him to become an advocate for this disease. He started Must Stop MS! on Facebook to provide support, new information regarding MS, and to raise awareness of the disease. Must Stop MS! quickly spread to Twitter and Instagram.  He started a weekly Twitter chat named #ChatMS that occurs every Monday at 7pm EST.  His mission is to bring the MS community together to help raise awareness, support each other, and provide hope.  Randy won’t stop until “we get that cure we all need.”

Enrique Alvarez MD PhD is an Assistant Professor of Neurology at the University of Colorado School of Medicine and cares for patients multiple sclerosis patients at the Rocky Mountain MS Center.  He was a graduate of the Medical Scientist Training program at the University of Colorado Denver and completed his neurology residency and neuroimmunology fellowship at Washington University in St. Louis.  He has a special interest in using biomarkers to customize treatments and patient care

Enrique Alvarez MD PhD

Jun 18 2020 MS Living Well Podcast 11: Sex and Multiple Sclerosis

Photo: Jeremy Banks on Unsplash

Sexual health is an important part of quality of life for many people.  Multiple sclerosis can cause new challenges and disrupt sexual relationships.  Positioning options, including pillows and slings, are reviewed that can help overcome weakness and stiffness of legs.  Factors that can be reduce a woman’s libido, or sexual drive, are addressed such as medications and hormone levels.  Ways to achieve a satisfying sexual relationship with disability from multiple sclerosis are discussed in terms of intimacy and foreplay.  Detailed solutions are presented such as stimulation and lubrication to overcome decreased or painful sensations with intercourse.

Up to 40% of men with multiple sclerosis can have low testosterone which can decrease libido.  An array of testosterone replacement options highlighted depending on whether a man still wants to father children or not.  Erectile dysfunction treatments discussed in depth including oral pills, intra-urethral suppositories, self-injection therapies, vacuum erection devices and penile implants.

 

 

 

 

Barry Singer MD, Director of The MS Center for Innovations in Care, interviews:

Heather Raznick MSW LCSW

Heather Raznick MSW, LCSW is a psychotherapist in clinical practice in St. Louis. She obtained a Masters in Social Work from Washington University. She trained at the world-renowned Masters and Johnson Institute, where she studied clinical sex therapy under the direct supervision of legendary sexologist Dr. William Masters.  She provides academic and clinical training to residents and medical students as well as lectures at several area hospitals.  Heather shares her expertise on sexuality and wellness with community groups and organizations. She also frequently appears on radio interviews and television programs as a guest expert.  She is a member and has received certifications in multiple organizations including American Association of Sex Educators, Counselors and Therapists and the International Society for the Study of Women’s Sexual Health.

Etai Goldenberg MD

Etai Goldenberg MD  is the Director of Men’s Health at Urology of St. Louis.  Dr. Goldenberg completed his undergraduate degree at University of Michigan and medical school at Wayne State University School of Medicine in Detroit. His urological surgery residency was obtained at Washington University in St. Louis.   In addition, he completed a fellowship in male reproduction and sexual health at the Smith Institute for Urology in New York City.  He specializes in male sexual health, male reproduction, microsurgery, prosthetic urology and testosterone replacement.

 

Jun 4 2020 MS Living Well Podcast 10: Bladder Strategies for Multiple Sclerosis

Photo: Juan Marin on Unsplash

Trouble with your bladder? Most people with multiple sclerosis have bladder issues. Penelope shares her personal bladder challenges with urgency, trouble emptying her bladder and use of catheters. Rather than being embarrassed, Penelope gives advice on when to speak up to get needed medical care and how to cope (laughter helps). Dr. Travis Bullock then explains what happens to the bladder in MS. Treatment strategies for bladder urgency reviewed including pelvic exercises, medications and Botox injections. Options for trouble emptying bladder highlighted including self-catherization and suprapubic catheters. Ways to reduce frequent urinary tract infections (UTIs) discussed including methenamine, d-mannose and cranberry tablets.

 

 

 

 

 

 

 

Barry Singer MD, Director of The MS Center for Innovations in Care, interviews:

Penelope of Positive Living With MS

Penelope is the author and founder of Positive Living with MS where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey.

Travis Bullock MD is a urologist with expertise in multiple sclerosis at Urology of St. Louis.  He completed his urologic surgery residency at Washington University School of Medicine in St. Louis and fellowship in Female Urology, Neuro-urology and Pelvic Floor Reconstruction at the Center for Continence Care and Female Urology at Metropolitan Urologic Specialists in Minneapolis, Minnesota.

Travis Bullock MD

May 21 2020 MS Living Well Podcast 9: Cognition and Multiple Sclerosis

 

 

Photo: Christina @ wocintechchat.com on Unsplash

This podcast explores cognitive issues in multiple sclerosis. Caroline Craven aka The Girl With MS shares the impact of MS on her short-term memory, word-finding ability and multitasking skills. She talks about the role of stress, sleep and mood have on her cognition.  Caroline reviews how she copes with these changes partially through diet, exercise and good sleep.  Abbey Hughes PhD, a rehabilitation psychologist from John Hopkins, outlines ways to deal with memory and multitasking obstacles for those living with MS.  Strategies to help cognitive functioning are shared including task completion tips, journal use, brain empowering apps, speech therapy, stress reduction and depression control.  Screening tools to check for cognitive problems such as brain processing speed reviewed.  MS brain changes and key ways to maintain brain health and better cognition emphasized.

 

 

 

 

Barry Singer MD, Director of The MS Center for Innovations in Care interviews:

Caroline Craven aka The Girl with MS is a certified life coach, writer and motivation speaker. Her writing focuses on articles in health journalism and highly rated blog. Her blog post topics range from personal experiences, research-based articles, recipes, life hacks and resources.

Caroline aka The Girl With MS

Abbey Hughes PhD is a clinical psychologist with expertise in rehabilitation psychology and multiple sclerosis rehabilitation.  She is an Assistant Professor of Physical Medicine and Rehabilitation at John Hopkins.  Her clinical and research interests include the assessment, treatment and management of psychological and cognitive difficulties associated with multiple sclerosis including adjustment to disability, sleep disturbance, fatigue, depression, anxiety, and problems with thinking or memory.

Abbey Hughes PhD

May 7 2020 MS Living Well Podcast 8. The Virtual Appointment: Telemedicine and Multiple Sclerosis

Photo: @nci on unsplash

Telemedicine is use of electronic technology to allow exchange of health information between locations. The use of telemedicine has rapidly become the standard for patient visits with their neurologists since March 2020.  To reduce the risk of COVID-19 exposure by going to a doctor’s office, remote appointments have become routine with use of phones, tablets and computers. Dr. Krieger from New York City and Dr. Okai from Dallas discuss their early insights to advantages and disadvantages of the new virtual appointments for their patients with multiple sclerosis. Tips to navigate the technology and improve your virtual visit shared. These MS experts share their advice on whether you should have a virtual appointment now or wait for an in-office appointment. The neurologists also speculate on the future of telemedicine.

 

 

 

 

Barry Singer MD, Director of The MS Center for Innovations in Care at Missouri Baptist Medical Center, interviews:

Annette Okai MD

Annette Okai, MD is a MS specialist and Medical Director of the Baylor Scott & White Multiple Sclerosis Treatment Center in Dallas, Texas.  She completed her residency in Neurology in 2006 and fellowship in Neuroimmunology in 2008. Dr. Okai interests include studying multiple sclerosis in diverse populations and the utilization of conventional and novel MRI techniques in multiple sclerosis.

Stephen Krieger, MD is a MS specialist at the Corrinne Goldsmith Dickinson Center for MS at Mount Sinai in New York.  He is an Associate Professor of Neurology at the Icahn School of Medicine at Mount Sinai and Director of the Neurology Residency Training Program.  He created a topographical model to better understand MS disease course that has been adopted globally.

Stephen Krieger

Apr 21 2020 MS Living Well Podcast 7. COVID-19 and Multiple Sclerosis

Image: Fusion Medical Animation on Unsplash

At the height of the COVID-19 pandemic, neurologists from major multiple sclerosis centers from Barcelona, Spain and Rome, Italy share their experiences on the front lines.  Spain and Italy had the highest rates of COVID-19 infections until surpassed by the United States.  These MS specialists share how they are supporting and advising patients during this crisis.  Virtual appointments and changes to MS treatment reviewed.  The neurologists share what happened to people with MS that were infected with this coronavirus in Italy and Spain.

 

 

 

Barry Singer MD, Director of The MS Center for Innovations in Care at Missouri Baptist Medical Center interviews:

Giovanna Borriello, MD

Giovanna Borriello, MD, MS Neurologist working at the MS Center in the academic Hospital Sant’ Andrea in Rome, Italy since 2001.  She had been an investigator over 40 clinical trials on multiple sclerosis including trials focused on new treatments.  In 2011, she founded a non-profit organization, called “Semper Mobilis” Onlus, for people living with MS, to give them reliable and updated information, to assist their caregivers with psychological and nursing support in the management of the disease and to offer best practices to healthcare professionals in the multidisciplinary setting with specific courses and update activities.

Jaume Sastre-Garriga MD, PhD is the Deputy director of Cemcat, The MS Center of Catalonia in Barcelona, Spain.  Dr. Jaume Sastre-Garriga received his MD at the University of Barcelona and his PhD at the Universitat Autònoma de Barcelona. He trained as a neurologist at the Neurology Department, Vall d’Hebron University Hospital.  He serves on the executive board of RIMS (Rehabilitation in Multiple Sclerosis) and the steering committee for MAGNIMS, the European networks for best practice and research in MS rehabilitation and MS MRI imaging, respectively.  Dr. Sastre-Garriga has published over 100 scientific articles in the past decade and serves on the Editorial Board of the Multiple Sclerosis Journal.

Jaume Sastre-Garriga, MD, PhD

 

 

Nov 7 2019 MS Living Well Podcast 6. Pregnancy & Multiple Sclerosis

Photo: @freestocks-org on Unsplash

 

Multiple sclerosis experts share invaluable information regarding pregnancy and multiple sclerosis.  The podcast covers pregnancy planning for a healthy baby while minimizing risk of multiple sclerosis disease activity.  Topics of unplanned pregnancies, birth control and role of high-risk obstetricians addressed.  Infertility and the role of in vitro fertilization in woman with MS covered. Genetic risks to children and pros and cons of nursing addressed.  Information for men who want to father children reviewed.

 

 

 

Clarie Riley, MD

 

Barry Singer MD, Director of The MS Center for Innovations in Care, interviews:

Claire Riley, MD  is the Director of the Multiple Sclerosis Center at Columbia University Irving Medical Center since January 2012 and an Assistant Professor of Neurology.  She earned an undergraduate degree from Dartmouth College and a medical degree from Vagelos College of Physicians and Surgeons (VP&S) at Columbia University. She completed her residency in neurology and 2-year clinical fellowship in multiple sclerosis at Columbia University Irving Medical Center. She was previously an attending neurologist and assistant professor in the Yale MS Center in New Haven, CT. Dr. Riley regularly teaches medical students, residents and fellows in the MS clinic. She is also an investigator in clinical trials related to multiple sclerosis.

Amy Perrin Ross, APN

Amy Perrin Ross, APN, MSN, CNRN, MSCN is a board certified neuroscience nurse and the Neuroscience Program coordinator at Loyola University Medical Center in Maywood, IL. She obtained her BSN and MSN from Loyola University Marcella Niehoff School of Nursing, Chicago, IL. As an advanced practice nurse, she coordinates the multiple sclerosis clinic at Loyola University Medical Center in Maywood, Illinois. In her role at Loyola, she has coordinated multiple clinical research trials in multiple sclerosis. She is a Past President of the International Organization of Multiple Sclerosis Nurses. She has authored numerous articles and book chapters on multiple sclerosis.  In addition, she has served as a clinical nurse consultant with the National Multiple Sclerosis Society, a member of the Health Care Advisory Council for the Multiple Sclerosis Association of America, and a board member of the Consortium of Multiple Sclerosis Centers. She has been an invited speaker at national and international meetings and conferences and has been very active in neuroscience clinical research for over 20 years.

 

Oct 24 2019 MS Living Well Podcast 5. Inside Angle: Partnering with Your Neurologist

Flavia Nelson, MD

Multiple sclerosis experts share advice on how to substantially improve your care when interacting with your neurologist. Key insights to develop trust and understanding with your doctor reviewed. Compelling info to help you advocate and communicate your desires and needs. Specific ways to make the most of your appointments addressed. Difficult questions are tackled such as progressive disease and long-term planning. Managing MS symptoms and wellness highlighted. Benefits of reviewing MRI images in the exam room outlined. Excellent tips on how to access free medication and MRI programs for people who are uninsured or have high out-of-pocket costs.

Timothy West, MD

Barry Singer MD, Director of The MS Center of Innovations in Care at Missouri Baptist Medical Center interviews:

Flavia Nelson MD, Associate Professor of Neurology, Director Multiple Sclerosis Division at University of Minnesota in Minneapolis. She completed her residency and multiple sclerosis fellowship at University of Texas Health Science Center in Houston, Texas.  Dr. Nelson has served as Chair of Department of Defense Panel for Multiple Sclerosis Research Program, committee member on Consortium of MS Centers MRI Guidelines Committee and Chair of International Advisory Board on Brain Atrophy and MS (2016).

Timothy West MD, MS Neurologist, Rocky Mountain Multiple Sclerosis Clinic in Salt Lake City, Utah.  Dr. West completed medical school at the University of California-San Francisco (UCSF) and fulfilled his residency in neurology at UCSF. He has had extensive experience and research in the area of MS, including at the Cleveland Clinic Lou Ruvo Center for Brain Health in Nevada, the Sansum Clinic in California, and the UCSF MS Center in California.

 

 

Oct 10 2019 MS Living Well Podcast 4: Cannabis & MS

Photo by Get Budding on Unsplash

 

 

 

Multiple sclerosis often causes nerve pain with burning and pins-needles sensations and spasticity associated with muscle tightness and cramping.  The specific role of medical marijuana components including THC and CBD in MS in alleviating these MS symptoms addressed.  Information regarding which MS patients are more likely to benefit from cannabis are reviewed in depth.  Risks and concerns of cannabis use in MS addressed.  All national, state and local laws should always be followed.

Barry Singer, MD, Director of The MS Center for Innovations in Care, interviews:

Allen Bowling, M.D., Ph.D. , MS neurologist at the Colorado Neurological Institute, Denver, Colorado

Jacob Sosnoff, Ph.D., Associate Professor in Department of Kinesiology and  Community Health, University of Illinois at Urbana-Champaign.

 

Allen Bowling, MD, PhD

 

Jacob Sosnoff,,PhD