Click here for a clinical version of this article to share with your child’s Physical Therapist.
A Qualified Physical Therapist
A qualified physical therapist (PT) for an individual with Duchenne will identify the goals of the individual, both in the present and also the future. What’s important to them? Are they more introverted or extroverted? Do they want to live on their own? Do they want to go to college? What does independence mean to them and their family?
The PT should think outside the box and help the individual with Duchenne achieve whatever goals are important to them. This even includes friendships and romantic relationships as they get older. These issues must be addressed as they are important to all human beings.
The Whole Person
The physical therapist should first and foremost be educating the family on the underlying process of Duchenne Muscular Dystrophy and make sure that the family has an accurate understanding of the disease process.
That understanding will in turn allow the family to make educated decisions about certain activities for their child when the time arises. This education should continue throughout the course of working with the family.
PT should also focus on stretching, flexibility, providing appropriate exercises that allow for mobility while minimizing damage, and recommending equipment when needed to facilitate independence.
The PT should also work to improve the quality of life of the whole person with Duchenne (and the family when possible). While quality of life goals will vary, this often involves maintaining independence and helping with access to the community, friends, school, or a job.
The relationship between the PT and the patient/family is usually a long-term one. The PT should help to advise the family on the best course of action as the disease progresses and what to focus on when.
In order to do all these things, the PT must have a solid understanding of the disease and its progression.
Duchenne Is Different
Understanding the underlying pathophysiology as well as the progression of Duchenne Muscular Dystrophy (DMD) is imperative for the treating physical therapist to understand. Unfortunately, not many PTs do understand.
It’s not uncommon for a very experienced pediatric physical therapist to have never had a DMD patient. Parents should not assume that because someone is a pediatric PT, that they know what to do with a patient with Duchenne.
PTs come out of physical therapy school knowing a little about most or all areas. Some specialize in different areas, but rarely is there specific training for DMD in PT school. Given that DMD is considered a rare disease, it’s important for the PT to have that knowledge to treat properly.
Most diagnoses that pediatric PTs work with require an approach of strengthening what is weak and working hard those muscles that need the work. However, due to the lack of dystrophin in dystrophic muscles with DMD, this approach will likely cause harm, damage the muscles, and speed up the progression of the disease.
Understanding these facts will create a different focus and perspective by the PT than they would have for the general population. They just have to be open to learning about Duchenne.
Willingness to Learn
Unfortunately, not every PT is willing to learn. It can be hard on the PT’s ego to admit when they don’t know something in their field. The PT might even worry about losing your business as a patient.
If you have a PT or other specialist that refuses to learn the basic principles about DMD, it’s time to find a qualified PT or specialist. Willingness to learn about Duchenne is more important in a PT than the claim that they already know everything about it. Our scientific understanding of the disease is constantly evolving and the PT must be willing to evolve with it.
Listen to your instinct if something feels off about the provider or you get the vibe that they don’t want to learn.
Your child’s well-being is too important to leave to someone who doesn’t know what they are doing, who is unwilling to learn and who can ultimately cause harm to your child.
Thank you, Doug Levine, pediatric PT, for collaborating with us on this page’s information. You are a huge asset to our Duchenne community.
Doug Levine is a pediatric Physical Therapist specializing in Duchenne since 2015. He is the owner of Growing Places Therapy and also a Physical Therapist for CureDuchenne.
Doug can be contacted at: dlevine@growingplacestherapy.com