New Myotonic Dystrophy Resources Available!

Myotonic is excited to announce multiple new resources will soon be available for download from our website! We hope you and your clinicians find these documents a valuable resource for your care and symptom management needs. Please consider providing a copy of these resources to your care team so they can stay up to date with the most recent developments on these topic areas. All of the following documents and more can be found on our toolkits and publications page!

  • NEW! Nutrition Guide for Individuals with Myotonic DystrophyThis guide is written and reviewed by nutritionists who are specialized in working with individuals with DM, and includes information on diet and DM, managing constipation, being overweight/underweight with DM, managing swallowing problems, feeding tubes, supplements, and sample meals.

  • UPDATED!  Role of Physical Therapy in the Assessment and Management of Individuals with Myotonic Dystrophy: Most individuals living with myotonic dystrophy (DM) will probably first encounter a physical therapist in the multidisciplinary clinic where they receive care. These Physical Therapy Guidelines for DM address the role that the physical therapist plays in DM care, including evaluation, education, instructions and physical movement recommendations.

  • NEW! Exercise Guide for Individuals with Myotonic Dystrophy: This guide is written by two physical therapists who are specialized in working with individuals with DM, and includes information on the benefits of exercise for DM, recommendations on aerobic activity, types of exercise, monitoring exercise, exercise strategies and finding motivation.

Coming Sooon!

  • Guide for Caregivers of Adults Affected by Juvenile-onset Myotonic Dystrophy: This Guide was developed as part of the comprehensive Juvenile-onset Adult support program, to help improve the quality of life of those affected by juvenile-onset DM and their caregivers. This Guide is specifically designed to help families affected by juvenile-onset DM understand how to manage their lives, especially at transition points in development and education.

  • Care Guidelines for Speech and Language Pathologists Treating Adults and Children with Myotonic Dystrophy: This guide is written and reviewed by an international group of speech and language pathologists who are specialized in working with adults and children with DM. The guidelines include information on assessment, diagnosis, and therapy for speech, swallowing and language needs related to DM. 

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