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Digital Academy: Disease Management

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Nutrition Issues Related to DM

In this webinar, Kari Lane, RD, CNSC, Clinical Dietitian at the University of Utah, discusses nutritious diets to maintain heart and GI health for people living with myotonic dystrophy.

4/16/18 video
Consensus-based Care Recommendations: What Do They Mean for You? (2018 MDF Annual Conference)

MDF 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! MDF 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.

Background PowerPoint Presentation

Click here for more presentations and videos from the 2018 MDF Annual Conference in Nashville, TN.

5/15/19 video
Staying Strong - DM & Exercise Panel (2015 MDF Annual Conference)

A panel of physical therapy professionals and people living with DM discuss ways to stay physically fit.

Panel discussion by Dr. Katy Eichinger, PT, DPT, University of Rochester; Mike Hamlin, DM Community Member; Dr. Leslie Krongold, EdD, Myotonic Dystrophy Foundation.

4/16/18 video
Facilitating Social Interaction in Myotonic Dystrophy with Dr. Missy Dixon

Watch this presentation on "Facilitating Social Interaction In Myotonic Dystrophy" by Melissa M. Dixon, PhD, MS from the University of Utah.

Download the slide deck!

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.

5/16/19 video
Meditation for Caregivers

In celebration of National Family Caregivers Month (November 2015), the Myotonic Dystrophy Foundation hosted a session on the benefits of having a meditation practice. The webinar was hosted by Dr. Genie Palmer, a former associate professor and researcher at Sofia University.

4/16/18 video
Pain and DM2

A father and son living with myotonic dystrophy type 2 describe the unique pain they experience with this disease.

6/29/18 video
Webinar: Decline of Executive Function of the CNS

As the inaugural presentation in our Living with DM Webinar series, we discuss the decline of executive function in the CNS due to myotonic dystrophy, as well as strategies for managing this symptom, and an update on current CNS research.

11/2/18 video
Applying for Disability Benefits

Speakers include: Melissa Spencer, Deputy Associate Commissioner in the Office of Disability Policy at Social Security Administration; Stacey Cloyd, National Organization of Social Security Claimants’ Representatives (NOSSCR); and Kevin Brennan, Senior Director at Faegre BD Consulting present a panel discussion on successfully applying for Social Security Administration benefits.

11/2/18 video
Creating a Medical Team for DM Care

Dr. Jacinda Sampson describes the importance of, and strategies for, creating a medical team for myotonic dystrophy care.

4/16/18 video
Treatment for Dysphagia

A discussion of the signs and symptoms of dysphagia, a swallowing disorder, as well as the different muscles that can be affected by this DM symptom.

4/18/18 video

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