Support & Care Materials
At PPMD we strive to equip every family with the most up-to-date care information possible. Quick access to important resources can be found below.
Family Care Guide
The updated Care Guide for Families can be used in different ways. You might find it easier to focus on a specific stage of Duchenne, or it may be more helpful to concentrate on a specific area related to care, such as steroids, cardiac, etc. We are hopeful that you will find this a useful tool for all those you are in contact with along this journey – parents, grandparents, teachers, physicians.
New Diagnosis & Early Care Guide
PPMD developed a comprehensive guide to provide accurate information that is easier-to-digest, and will help families to navigate caring for a child with Duchenne while maintaining a happy, rewarding life. This guide is broken down into four main themes, and we recommend families reading at their own pace and comfort level.
- What is Duchenne Muscular Dystrophy?
- Adjusting to the Diagnosis & Finding Support
- Care Considerations
- Research & Clinical Trials
Care Imperatives – Pediatric
Imperatives for Duchenne MD is a very focused and very brief, single-page snapshot of the imperative components of comprehensive pediatric Duchenne care as described in the Care Considerations. This document is intended as a snapshot of care from diagnosis through early adolescence, helpful for medical providers who may not be familiar with this diagnosis.
Care Imperatives – For Adults
The Adult Imperatives for Duchenne MD describes the imperative components of transitions of care across late adolescence and adulthood as described in the Care Considerations. This document is intended as a brief, single page snapshot of care, helpful for medical providers who may not be familiar with caring for adult men living with Duchenne.
PPMD knows that keeping track of all elements of your/your child’s care can be overwhelming and confusing. For this reason, we have created a series of care checklists for families to track and understand recommended care relative to each stage of disease progression. These checklists are meant to be a resource to help organize and navigate the many moving parts of Duchenne care.
- Early ambulatory/childhood (Download)
- Late ambulatory (Download)
- Early non-ambulatory (Download)
- Late non-ambulatory (Download)
PJ Nicholoff Steroid Protocol
Patients taking chronic daily steroids are often found to have ineffective cortisol coverage, which can lead to adrenal crisis, in the case of a severe injury or illness, or during a surgical experience. The PJ Nicholoff Steroid protocol was developed, and published, to address all issues around steroid associated issues.
Safe & Unsafe Medications Resource Sheet
PPMD’s Safe & Unsafe Medications Resource lists medications that are frequently used in the management of Duchenne, as well as both over-the-counter and prescription medications used for other conditions not specific to Duchenne that you may encounter. Included in this resource are cautions that should be observed that are specific to patients living with Duchenne. We encourage you to use this resource both as a reference, but also a means to track you/your child’s medications.
Common Labs and What They Mean in Duchenne
A variety of laboratory (lab) tests are obtained in the assessment and treatment of Duchenne, and those laboratory tests can be often confusing and variable in nature. As such, PPMD has developed a downloadable resource sheet that includes an overview of commonly ordered tests, their “normal” ranges, and common reasons why those results might be outside of the normal or expected range. As always, it is important to discuss all of your lab results, and their specific implications for you, with your medical team.
Range of Motion Guide
Working to prevent contractures proactively (before they occur) is always best. Contractures are not always preventable. If they do occur, there are ways to manage contractures and maximize the function of the joint. PPMD worked with a team of expert Physical Therapists (PTs) to develop an easy to follow Range of Motion handout (download) for parents and physical therapists. This handout summarizes the current physical therapy guidelines.
Physical Therapy Videos
PPMD recently unveiled a new series of Physical Therapy Videos. We all know how critical consistent PT is for people living with Duchenne and this new video series demonstrates the current Physical Therapy Guidelines, PPMD helped develop. Included in the series are recommendations for stretching routines and safe, favorable mobility device positions for both ambulatory and non-ambulatory people living with Duchenne.
Education Matters Guides
To better assist parents and teachers in providing a quality education for the student with Duchenne, PPMD has created Education Matters Guides specifically for teachers and physical education teachers. The guides cover everything from the basics of Duchenne and its progression to specific classroom accommodations organized by age group.
Emergency Care Bundles
During an emergency, it’s important to remember to communicate care recommendations specific to Duchenne with doctors, nurses, and hospital administration. PPMD resources include an emergency information card that can be kept in your wallet, a larger weatherproof card with a chain that can be easily attached to backpacks, scooters, strollers, wheelchairs and other mobility devices, a bookmark that reminds you to T.H.I.N.K. during an emergency, and a magnetic folder to keep medical information for emergency personnel.
Duchenne Info – Wallet Card
Based on idea that Arizona parent Jill Castle had, this business card is an easy way for you to educate someone you run into about Duchenne muscular dystrophy. When you are at a loss for words or don’t have the time to explain Duchenne, this card is all you need to say.
Duchenne Carriers: Your Questions Answered
Being a carrier of Duchenne can affect so many aspects of a woman’s life, including health care, family planning, and mental health. As part of our efforts to better understand and support carrier issues, this comprehensive guide addresses the questions most often asked by carriers. It was developed in collaboration with carriers and with expert providers from neurology, genetics, cardiology, and psychology.