Podcaster
Episoden
08.11.2024
25 Minuten
In this "Ask the Expert" episode, Dr. GG deFiebre of SRNA was
joined by Dr. Rebecca Martin, who detailed the mechanism and
benefits of transcutaneous spinal cord stimulation (TSS). Dr.
Martin explained how TSS, a non-invasive method, aims to amplify
spinal cord excitability and improve neurological functions like
movement and sensation [00:01:25]. She contrasted TSS with
implanted spinal stimulators, noting their respective
applications and advantages [00:02:34]. Dr. Martin shared the
promising outcomes of TSS in clinical trials, emphasizing its
potential for widespread clinical use, and she urged patients to
inquire about it at their clinics [00:05:42]. You can read her
group's recent paper here:
"Transcutaneous Spinal Cord Stimulation Enables Recovery of
Walking in Children with Acute Flaccid Myelitis"
https://www.mdpi.com/2227-9067/11/9/1116
Rebecca Martin, OTR/L, OTD, CPAM received her Bachelor of Science
in Occupational Therapy from Boston University in 2001 and her
Occupational Therapy Doctorate from Rocky Mountain University of
Allied Health Professions in 2008. Prior to joining the Kennedy
Krieger Institute, Dr. Martin worked in brain injury
rehabilitation in Boston, Massachusetts.
Dr. Martin joined Kennedy Krieger in 2005 as a Senior
Occupational Therapist in the International Center for Spinal
Cord Injury. Since 2010, Dr. Martin has been the Manager of
Clinical Education and Training at ICSCI and is responsible for
program development, staff training, and oversight of the
clinical research program. Dr. Martin speaks nationally on topics
related to Activity-Based Rehabilitation; she has taught many
continuing education courses for rehabilitation professionals in
the areas of neurological pathology, rehabilitation, and
research. She has been the principal investigator and
co-investigator for grants from the Paralyzed Veterans of America
Education Foundation and Department of Defense to develop,
promote, and disseminate an activity-based restorative therapy
training program and curriculum.
In 2011, Dr. Martin was awarded the Leader in Spinal Cord Injury
Care by the International Center for Spinal Cord Injury at
Kennedy Krieger. From 2011-2016, Dr. Martin served as a Committee
Chair for the annual Contemporary Trends in Spinal Cord Injury
Management Symposium at Kennedy Krieger. As a consultant for
SwissStim, she has helped create clinical use guidelines for
training and documentation. In 2015, Dr. Martin was invited to
serve on the NIH and NINDS Committee to establish Pediatric
Spinal Cord Injury Common Data Elements.
Mehr
04.11.2024
15 Minuten
In this "Ask the Expert" episode titled, "Women's Health within
Neuroimmunology," Dr. Sonia Singh joined Krissy Dilger of SRNA to
share women's health concerns within the context of
neuroimmunology, focusing on issues like fertility and pregnancy
for those with rare neuroimmune disorders [00:01:20]. Dr. Singh
discussed how certain conditions, such as neuromyelitis optica
spectrum disorder (NMOSD) and autoimmune encephalitis, and
medications could impact fertility [00:03:45]. They also explored
the increased risks of relapse during and after pregnancy and the
importance of coordinated care between neurologists and
obstetricians [00:07:10]. Dr. Singh emphasized the importance of
teamwork during pregnancy to ensure optimal outcomes for both
mother and child [00:21:45].
Sonia Kaur Singh, MD is a Neurologist and Assistant Professor of
Neurology at Medical University of South Carolina (MUSC),
Charleston who specializes in Neuroimmunology. Dr. Singh obtained
her medical degree from Kasturba Medical College, Mangalore in
Southern India. After graduation, she worked with dementia
specialists in India studying dementia in culturally and
linguistically diverse populations. She completed her neurology
residency at University of Texas Health Science Center Houston
(UTHealth Houston) in the Texas Medical Center. During residency,
she was involved with innovative learning strategies including a
structural competency curriculum and graduated with the
prestigious Frank Yatsu Award for Excellence in Clinical
Neurology. After residency, she completed a one-year fellowship
in Multiple Sclerosis and Neuroimmunology from UTHealth Houston
where she was actively involved in medical education and clinical
trials. Dr. Singh has a special interest in women’s health and
cognition in neuroimmune conditions.
Mehr
29.10.2024
32 Minuten
In this "Ask the Expert" episode titled, "Self Identity and
Finding Meaning Following Diagnosis," Krissy Dilger of SRNA spoke
with Susan Y. Wegener, LCSW, a licensed clinical social worker,
about coping with a chronic diagnosis and its emotional
adjustments, referencing Kübler-Ross’ stages of grief [00:03:45].
Susan discussed the importance of self identity transformation
post-diagnosis and the need for patience and self-compassion in
finding new ways to move forward [00:08:34]. The value of inner
strength, setting priorities, and support groups for reducing
isolation and fostering compassion was emphasized [00:15:20]. The
discussion concluded with a focus on post-traumatic growth,
highlighting greater life appreciation and mental flexibility as
key coping strategies [00:16:01].
Susan Y. Wegener, LCSW is a licensed clinical social worker who
maintains a private psychotherapy practice in Austin, TX. Her
clinical practice specializes in work with individuals coping
with chronic medical diagnoses. She completed her undergraduate
degree, in Psychology, from Skidmore College, Saratoga Springs
N.Y., 1993 and her graduate degree, in Social Work from Columbia
University, New York City in 1995. In addition to her private
practice, she has worked in multiple medical settings throughout
her career and helped to empower and support individuals from
diagnosis through the adjustment process. She became a Partner in
Care for the National Multiple Sclerosis Society in 2017 and is
passionate about her work with individuals diagnosed with MS and
various other neurological diagnoses. In her free time, she
enjoys singing in a local chorus, cooking, swimming, and spending
time with her family. Please see the following link to her
workbook “Hold on to Hope.”
https://www.amazon.com/Hold-Hope-Overview-Strategies-Chronic/dp/1512218715
00:00 Introduction to the Podcast
00:37 Meet the Expert: Susan Wagner
01:00 Coping with a Chronic Diagnosis
01:47 The Emotional Adjustment Process
05:36 Understanding Self Identity Post-Diagnosis
08:34 Dealing with Denial
10:39 Coping Strategies for Shifting Self Identity
14:08 Finding Meaning and Purpose
14:26 Exploring the Impact of Diagnosis
15:25 Reflecting on Values and Strengths
16:06 Coping Strategies for Finding Meaning
16:29 The Role of Relationships and Support Systems
18:05 Prioritizing Self-Care and Realistic Goals
20:04 Finding Meaning in Suffering
20:15 The Concept of Post-Traumatic Growth
24:52 The Importance of Stillness and Self-Compassion
28:31 Mental Flexibility and Creative Thinking
30:02 Conclusion and Final Thoughts
Mehr
06.09.2024
16 Minuten
In this episode titled, "Operant Conditioning Rehabilitation
Studies," part of the "Ask the Expert: Research Edition" series,
Krissy Dilger of SRNA was joined by Dr. Aiko Thompson. Dr.
Thompson explained the fundamental principles of operant
conditioning and its application in enhancing motor function and
sensory pathways in individuals with spinal cord damage due to
neuroimmune disorders [00:01:02]. They delved into specific
trials aimed at improving spasticity, foot drop, and neuropathic
pain, highlighting current studies and ongoing trials [00:02:28].
Dr. Thompson shared details on how eligible participants can take
part in these studies and the promising potential outcomes
[00:13:39].
Aiko Thompson, PhD is a neuroscientist and an associate professor
in the College of Health Professions, Medical University of South
Carolina, Charleston, SC. She did her PhD with Dr. Richard Stein
at the University of Alberta, Canada, and then did a postdoc
training with Dr. Jonathan Wolpaw at the Wadsworth Center in
Albany, NY. During her PhD, she was engaged in non-invasive human
neurophysiology / plasticity research related to the use of FES
(functional electrical stimulation) foot drop simulator. She also
started investigating normal and abnormal spinal reflex
modulation during walking and other dynamic movements in people
with and without chronic CNS disorders. Then, during her postdoc,
she developed the human H-reflex operant conditioning protocol.
In 2007, Dr. Thompson established her own lab. Since then, she
has been working on understanding CNS plasticity in human
sensorimotor control and how to guide the plasticity to help
restore useful function in people after CNS damage. Her current
research focuses on investigating functional roles of spinal
reflexes and evaluating the CNS plasticity associated with
operant conditioning of EMG evoked responses (e.g., spinal
reflexes and motor evoked potential to transcranial magnetic
stimulation) in people with SCI and other neuromuscular
disorders. Her ongoing research is funded by NIH, DoD, South
Carolina funds, and private endorsements.
00:00 Introduction to the Podcast and Guest
01:02 Understanding Operant Conditioning
02:28 Background and Development of Operant Conditioning Trials
05:33 Current Research and Clinical Trials
09:43 Setup and Participation in Studies
11:50 Study Results and Future Directions
13:39 How to Get Involved
14:29 Acknowledgements and Sponsor Information
Mehr
07.08.2024
36 Minuten
In this episode of "Ask the Expert," hosted by Krissy Dilger of
SRNA, Dr. Shuvro Roy talked about the importance of legislative
advocacy in healthcare [00:01:10]. Dr. Roy discussed how
physicians can engage in legislative advocacy by sharing their
practice stories and providing technical expertise [00:05:05]. He
emphasized the crucial role of patients in advocacy, highlighting
that their personal stories carry significant weight with
legislators [00:07:45]. Dr. Roy also shared examples of
successful advocacy efforts, such as telemedicine policy changes
and Medicare reforms, contributing to better patient outcomes
[00:15:10].
Shuvro Roy, MD is an assistant professor of Neurology at the
University of Washington, specializing in Neuroimmunology. He
completed his neuroimmunology and neuroinfectious disease
fellowship at Johns Hopkins University. He graduated from Medical
School at Ohio State University and completed his neurology
residency at University of California, Los Angeles. Dr. Roy is
actively engaged with a number of projects to improve access to
care, healthcare inequality, and patient safety for people with
MS and related conditions, with a special interest in
neuromyelitis optica and MOG antibody disease. His primary
research focus examines how to better leverage health systems to
understand and treat neuroimmunologic disorders. He chose to work
with people who have MS and rare neuroimmunologic conditions
because of the opportunity to build longstanding patient-provider
relationships and to help his patients thrive in the face of
challenging lifelong conditions.
Mehr
Über diesen Podcast
The goal of our “Ask the Expert” podcast series is to share the
latest research and information on rare neuroimmune disorders and
provide an avenue for individuals diagnosed with these disorders
and their family members to ask questions to experts who specialize
in these disorders. The podcasts are moderated based on questions
submitted by our community. We would like to hear from you. If
there are topics that you would like us to address in our podcasts,
you can share your thoughts by sending an email to
info@wearesrna.org and please use SRNA Podcast in the subject.
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