Occupational therapy for individuals with Duchenne muscular dystrophy (DMD) requires a unique and specialized approach to maximize benefit and reduce harm. It is incredibly important that those performing occupational therapy duties for those with DMD are trained and have experience. That’s why CureDuchenne has launched its Certified Occupational Therapist Program: to ensure that those within the field are receiving the most comprehensive, up-to-date training imaginable. This program builds on CureDuchenne’s Physical Therapist Certification Program to help prolong independence.

Recently, I sat down with Jennifer Wallace Valdes, PT, Founder of the Duchenne Therapy Network and Physical Therapist for CureDuchenne. Jennifer provided insight into what DMD is, the need for specialized care, the breadth of resources and training in the Certified Occupational Therapist Program, and advice for the newly diagnosed.

What is Duchenne Muscular Dystrophy (DMD)?

Duchenne muscular dystrophy (DMD) is a rare genetic disorder that is characterized by progressive muscle weakness and degeneration. It is one of nine forms of muscular dystrophy. Normally, the DMD gene encodes for the production of dystrophin, a protein that contributes to muscle cell strength and function. However, in DMD, genetic mutations prevent the body from creating dystrophin. As Jennifer explains:

“This leads to muscle deterioration and the inability to regenerate muscle cells. Individuals with DMD grow weaker over time and begin to lose abilities as they age.”

Because DMD is an X-linked disorder, males are significantly more affected; approximately 1 in every 3,500 male births has DMD, compared to 1 in 50 million female births. Typically, symptoms manifest before age six, and often appear between ages 2-3. These symptoms can (but do not always) include:

• Frequent tripping and falling
• Muscle weakness that begins in the legs, pelvis, and thighs before progressing to the rest of the body
• Enlarged calves
• Delayed speech and language development
• Cardiomyopathy
• Reduced bone density and increased risk of fractures
• A waddling gait
• Lumbar lordosis (inward curvature of the spine)
• Difficulty walking or moving positions
• Impaired learning or cognition
• Fatigue
• Progression to heart disease and respiratory failure

Currently, treatments for DMD are symptomatic. Jennifer shares:

At this time, there is no cure. However, we are seeing life expectancy increasing somewhat due to changes in care. In the past, DMD was often fatal in teenage years. Now the life expectancy is mid-20s with some people surviving into their 30s.

About Jennifer Wallace Valdes, PT

Jennifer Wallace Valdes, PT is a licensed physical therapist. After receiving her Bachelor of Science degree in Exercise Physiology (with honors) in 1998, she received her Master of Physical Therapy degree from Chapman University in 2002. She has been an elected representative of the California Physical Therapy Association.

In 2002, as a new graduate, Jennifer began working in California in the pediatrics realm. She shares:

“My very first day and very first patient changed the trajectory of my entire career. At the time, this boy came in who was undiagnosed. The parents tell the story all the time; they even ended up going on to found CureDuchenne. But when he came in, there wasn’t anything to tell me what to do with this patient. I wanted to soak up any information I could find to help this family. But it was really difficult to find that.”

Over the next several years, Jennifer met with various experts and physicians within the field for mentorship and advice. During this time, she gained deeper insight into what Duchenne muscular dystrophy is and how to best assist and support families. In 2010, she founded and launched the Duchenne Therapy Network, an outpatient physical therapy practice. She herself sees patients in their homes in LA and Orange County and works with individuals with DMD or Becker muscular dystrophy.

Eventually, Jennifer also began putting her knowledge towards creating a physical therapy program for CureDuchenne. This program allows therapists to become certified, speak with other therapists, and answer questions. She explains:

Physical therapy can help those with DMD to prolong their ability to walk, raise their arms, and perform other tasks. We keep the muscles protected by teaching them how not to overuse their muscle, and we educate the family on how to do this as well. Our program provides educational opportunities, resources, and even continuing education.

Learn more about Jennifer.

The CureDuchenne Certified Occupational Therapist Program

CureDuchenne offers a wide variety of resources for families, patients, researchers, therapists, and more. Most recently, CureDuchenne has launched its Certified Occupational Therapist Program to meet the specialized needs of individuals living with Duchenne muscular dystrophy. But what is occupational therapy? Jennifer explains:

“Occupational therapy and physical therapy work hand-in-hand and offer various techniques and treatment interventions. In occupational therapy, you look more at fine motor development, such as using the hands or performing smaller movements. Fine motor skills contribute to how someone takes care of themselves: bathing, grooming, eating. So just like ‘occupation’ implies, this therapy helps individuals learn how to set up their environment at work or school, how to perform tasks and make them the most independent in their environment. Occupational therapy can also offer advice on equipment like bathing agents or hand splints. It involves a lot of assistive technology and teaching people how to use that.”

Occupational therapy differs from patient-to-patient depending on their disease and/or needs. For this reason, occupational therapists for individuals with DMD must have the specialized knowledge to work with someone who has this condition. Without prior knowledge or experience working with people with DMD, occupational therapy can do more harm than good.

Don’t forget to check out Part 2 of our interview, where Jennifer expands on the program and how to apply, the challenges and rewards of working in this field, and advice for newly diagnosed families.