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For Families & Caregivers
Caring for Someone Living with Duchenne
As we continue learning how to treat Duchenne, two methods have consistently proven to be effective: physical and occupational therapy.
Beneficial at all stages and ages of the disease, therapy even has the potential to delay Duchenne’s progression. To maintain mobility, flexibility and quality of life, it is crucial that therapy routines occur daily. However, the uniqueness of the disease means patients require physical and occupational therapists with a specialized set of skills and knowledge
Benefits of a CureDuchenne Certified Physical and Occupational Therapist
When it comes to Duchenne, no two individuals are alike. Each person requires a flexible, individualized treatment plan to provide the greatest benefit. And they need specially trained experts to help them. CureDuchenne created the first-of-its-kind Physical and Occupational Therapy Certification Program aimed at designating physical and occupational therapists who are able to provide optimal care and support to individuals with Duchenne.
Through these CureDuchenne Certification programs, therapists receive on-going training and assessments, ensuring they are up to date on the most current practices. A therapist without specialized training could inadvertently cause harm to an individual with Duchenne which is why receiving care and treatment from a certified practitioner is imperative. CureDuchenne Certified Physical and Occupational Therapists® are well equipped with the knowledge of what stretches, exercises, home program routines and medical equipment are most beneficial, and least harmful, for individuals with Duchenne.
Families affected by Duchenne will:
- Be able to locate a qualified provider for physical and occupational therapy
- Have the assurance of knowledge level of the CureDuchenne Certified Physical and Occupational Therapist®
- Receive a higher level of care due to the network connections of those who are CureDuchenne Certified Physical and Occupational Therapists®
- Benefit from the continuity of care between CureDuchenne Certified Physical and Occupational Therapists® and other healthcare providers operating within the current standards of care
- Please feel free to contact Jennifer or Doug (info below) or any of the CureDuchenne Certified Physical or Occupational Therapists® in your area if you have any questions.
CureDuchenne Physical Therapy Staff
Jennifer Wallace Valdes, PT, draws from experience in pediatrics since 2002 with an emphasis in the muscular dystrophy population. She has been invited to present at Duchenne conferences and the Academy of Pediatric PT Annual conference, and has taught continuing education to healthcare professionals since 2009. She is the owner of Duchenne Therapy Network. She continues to practice and provide evaluation, treatment and consultations for those with Duchenne and Becker muscular dystrophy.
Contact: jennifer@cureduchenne.org
Doug Levine, PT, is the owner of Growing Places Therapy Services, PLLC. A physical therapist since 1997, he has primarily focused on pediatrics and Duchenne muscular dystrophy. Since 2006, Growing Places has served over 500 children and their families, providing pediatric physical, occupational and speech therapies in the home, school and daycare settings.
Contact: doug@cureduchenne.org
Frequently Asked Questions
CureDuchenne offers many physical therapy related resources to help therapists help their patients and families. Please refer to these printable handouts (some available in Spanish) and informative videos for useful information from stretching to school accommodations and equipment selection.
There are 5 attributes that most with Duchenne present with:
- Enlarged calf muscles– called “pseudohypertrophy”
- Gower Maneuver (see image below) when getting up from the floor, using the hands on the floor and the legs
- Toe walking– common but not always present at young ages
- Waddling gait– an excessive side to side sway of the body while taking steps
- Falling often– more than typical children and maybe even being referred to as a “clumsy” child
- Confirm what tests were used to conclude the diagnosis of Duchenne. (Blood test (CK), genetic test, clinical tests, muscle biopsy, etc.)
- Take that information and seek the baseline evaluations required at a knowledgeable multidisciplinary neuromuscular clinic.
- Obtain confirmatory genetic testing to know the specific genetic mutation present.
- Participate in the Cares Registry
- Request physician referrals for physical and occupational therapy, pulmonary, cardiac, orthopedic, genetic, dietician, and gastrointestinal consultations to name a few that may be needed depending on age.
- If you suspect Duchenne muscular dystrophy but your physician is unsure or states that it is too soon to tell.
- Your son has just been diagnosed and you do not know what to do first.
- You have been told by a physician or other parents that you need to be doing stretches.
- You learned the stretches online or by word of mouth and need to check that they are being done correctly.
- Your son needs night splints for his ankles.
- There has been a change in his condition, strength, function, pain or flexibility even if the change is minor.
- When adaptive equipment is needed for mobility and to ease daily activities.
The best routine to do for your home stretching program would be:
- A warm bath or shower
- A gentle massage (as seen in instructional video below)
- A stretching routine as directed (as seen in instructional video below)
Physical therapy treatment plans are individualized for the individual patient. After the therapist does a comprehensive evaluation, he or she determines the treatment plan and takes into consideration such factors as: current physical status, functional status and concerns and goals that you and your child have. In addition to information gathered during the assessment, knowledge of the disease progression and stages of Duchenne can help anticipate some future needs that may require planning in advance (for example, evaluation for a mobility device), which can also influence frequency of PT appointments.
With that said, there is no magical formula, age or stage of Duchenne that automatically determines therapy frequency. It is highly individualized and can and should change throughout the course of your child’s therapy. You and your child’s physical therapist (and your child, when age-appropriate) should talk in detail about why a specific frequency was chosen and what the actual session may look like and include.
It is better to do the stretches while your son is awake, so he can get used to the routine. Involving him in the daily stretching routines (for example: having him count out loud with you, singing a song while holding the stretch for the duration of the song, or putting stickers on a reward chart) may make it a more pleasant experience for him with less resistance. That said, if there are times when you do not want to wake him up from a nap and otherwise would not be able to get the stretching program done that day, it is okay to stretch him while sleeping.
It is recommended as part of the standards of care that all people with Duchenne muscular dystrophy utilize resting Ankle-Foot orthoses (AFOs). These devices are intended to prevent the onset or the worsening of ankle stiffness. It is recommended that they begin as early as possible, even before any stiffness of the ankles has begun. It is easier to prevent stiffness before it starts then reverse it once it exists. Children as young as 2 years old have started routine use of AFOs. When these are consistently used from a young age, the results tend to be more beneficial.
60-second stretches allows enough time for muscle tissue to relax and lengthen. There really is no advantage to holding a stretch for longer than 60 seconds. We want to avoid over-stretching (which in turn may cause extra pain/discomfort and tissue damage) or cause voluntary resistance (your child using his muscle strength to push back against the stretch). If you need more focus on one area, we recommend doing the 60 seconds then relaxing before repeating the stretch one more time for 60 seconds. Since each person is different, it is recommended to consult with your physical therapist to determine the best individualized program.
It is not “mandatory” for each family to purchase a massage table for stretching, as the decision may depend on space in your home, finances and the size of your child. Many families perform the stretches on a couch or bed which can be a solution although many beds and couches are much too soft. Massage tables can be adjusted for different heights, so at some point as other factors change, it may be beneficial to get a massage table to promote safety for transfers and proper body mechanics for the person performing the stretches.
Yoga is a wonderful option for self-stretching, core/trunk stabilization, respiratory health and circulation to add to your home exercise program. The program should avoid “power poses” requiring a great deal of energy and strength. Consider seeing a physical or occupational therapist who is certified in “therapeutic yoga” for both adults and children. Regardless of whether the instructor is a health care professional or a general yoga teacher, ensure that he or she is knowledgeable on both safe and contraindicated poses and movements for those with Duchenne muscular dystrophy.
Video games can offer a nice break from or addition to physical activity. However, keep in mind that video gaming usually involves sitting in one position for an extended period of time. Even though demands are less on the legs and cardiorespiratory system, all muscles are susceptible to getting stiff and tight—including the smaller muscles and tendons in the hands and fingers! Depending on their abilities and tolerance, consider games using motion control console systems (such as the Microsoft Kinect for Xbox 360, Sony PlayStation Move or Nintendo Wii) to incorporate more movement while gaming. Another suggestion is to set a timer to signal “stretch breaks.” Ask your physical and/or occupational therapist to help with alternate positions or modifications to keep video gaming safe and fun!
Most physical and occupational therapists have never met, let alone treated a patient with Duchenne. In many cases, Duchenne was not covered during their education. All therapists should have the hands-on skills required to treat someone with Duchenne but what is more important is that they understand what Duchenne is so that they can apply their skills correctly.
When looking for a qualified therapist, please look at the CureDuchenne Certified physical therapist list. If you need further information, please contact Jennifer@CureDuchenne.org. They have received additional training and testing on Duchenne management and care, and they are uniquely qualified professionals you can reach out to. It may help if you are able to ask others in the Duchenne community if they have a referral for you. If these resources are not helpful in your area, you can quickly interview a potential therapist with these three questions to see if they might be the “right” one:
- Have you ever treated anyone with Duchenne? If so, how many, how long ago and what stages of Duchenne do you have experience with?
- What therapeutic exercises such as stretching and strengthening do you focus on with Duchenne? You are hoping to hear that they understand the importance of frequent stretching and the caution needed with any “strengthening” type of exercise.
- Would you be willing to consult with a Duchenne therapy specialist, such as Jennifer Wallace, to collaborate on proper treatment techniques if needed?
Getting Started
