This session explains how myotonic dystrophy may impact your heart and provides an overview of the cardiac electrical system, common symptoms associated with conduction problems, and preventative measures.
Exercise, Nutrition & Speech with Katy Eichinger, PhD, DPT, Leslie Vnenchak, MA, CCC-SLP, and Robin Meyers, RD, MPH, LDN
This rehabilitation panel reviews current research and strategies for managing DM symptoms through exercise, speech and nutrition.
Download the Exercise Slide Deck.
Watch this presentation on "Facilitating Social Interaction In Myotonic Dystrophy" by Melissa M. Dixon, PhD, MS from the University of Utah.
In this webinar, Dr. Missy Dixon, PhD, MS, reviews the importance of social connection, including the physical health and mental health benefits of social connection, how the illness experience affects social connection and interaction, and how to navigate social connection for those affected with myotonic dystrophy and their caregivers. The webinar discusses the impact of myotonic dystrophy on social status and identity, and provides helpful strategies for facilitating successful social interactions and communication. Planning and problem solving in social situations are reviewed, including goal setting, barriers to social interaction, and how careful planning is crucial to successful social interactions. This is a great resource for those affected with myotonic dystrophy and their caregivers as it provides clear direction and advice on how to manage common social situations that arise in daily life.
Myotonic has recently published Consensus-based Care Recommendations for Adults with DM1 in Neurology Clinical Practice online September 13.
Now we need to make sure that every clinician treating a DM patient has them and is using them – and we need your help! Myotonic is asking our community members to help educate their doctors about the care recommendations, and we'll show you how. Watch DM doctors and community members act out entertaining skits that will explain what to say to your doctors during your doctors visits. These skits will include a twist: affected community members will be the doctors and doctors are patients in these hilarious educational vignettes.
Facilitator: Jacinda Sampson, MD, PhD, Stanford University
Find a write up on the DM1 Care Recommendations here.
Click here to download the Clinic Visit Planner.
Current strategies for managing disease progression and maintaining quality of life, including the latest in tools and resources.
Speaker:
Cynthia Gagnon, OT, PhD, Université de Sherbrooke
Current strategies for managing disease progression and maintaining quality of life, including the latest in tools and resources.
Speaker:
Missy Dixon, PhD, University of Utah
Click here for more presentations and videos from the 2018 MDF Annual Conference in Nashville, TN.
In 2017, MDF finally achieved one of its goals for the community when congenital myotonic dystrophy was added to the Compassionate Allowance Program for Social Security Disability. Join us for an informational webinar with SSA representative Deborah Dennis, who will explain how this new development affects the DM community and what will change in the application process going forward. Click here to download the Power Point Presentation.
Darcy Trill, RDHAP, mobile dental hygenist who specializes in the treatment of people with disabilities and special needs in their homes, provides a compelling overview of the risks of ignoring dental health for DM patients, and strategies for achieving and maintaining oral health. From the 2017 MDF Annual Conference.
Dr. Melissa Dixon of the University of Utah discusses mental health challenges and symptoms sometimes experienced by people living with DM, and strategies for coping with everything from depression to anxiety and 'brain fog' From the 2017 MDF Annual Conference.
Dr. Jacinda Sampson, joined by Dr. Ian Bowler, presents on the complications experienced by people living with myotonic dystrophy when they are subjected to anesthesia and, as importantly, other pain medications that can create similar complications and risks. This is critically important information for every DM family member and attending clinician to know. From the 2017 MDF Annual Conference.