What to Know About Telehealth for Muscular Dystrophy

Muscular dystrophy is a group of genetic diseases characterized by a gradual loss of motor function, gait problems, progressive respiratory failure, and cardiomyopathy.

Accessing medical services can be challenging for people with muscular dystrophy during the COVID-19 pandemic, especially since it is recommended to avoid exposure and contact with others.

Thanks to technology, people with muscular dystrophy can now maintain some aspects of their care through telehealth visits that are carried out virtually.

When to Use Telehealth for Muscular Dystrophy

Telehealth for muscular dystrophy can be a useful tool for tracking disease progression and maintaining regular follow-ups and communication with your healthcare providers. It is important to maintain your regular checkups with your healthcare provider to stay on top of your condition and make adjustments to your treatment and medication dosage as necessary.

When in-person visits are difficult to attend or pose an increased risk of potential exposure to viruses like COVID-19, telehealth is an important asset for maintaining continuity of care for muscular dystrophy.

Telehealth visits can help your healthcare providers manage your muscular dystrophy by allowing them to:

• Assess your symptoms and changes over time
• Determine the effectiveness of your current treatment and make changes as needed
• Refill prescriptions for medications
• Discuss the results of imaging tests and bloodwork
• Track disease progression
• Answer questions about managing muscular dystrophy

Certain providers can also deliver physical therapy virtually through telehealth, although it is most effective to attend physical therapy visits in person so that your physical therapist can perform a physical exam and make corrections as you perform certain exercises.

Physical therapy clinics also have access to more space and equipment than you may have at home. If you are uncomfortable attending physical therapy visits two to three times a week as is commonly recommended, consider attending your initial evaluation in person and following up with the remainder of your care via telehealth visits and a home exercise program.

Benefits and Challenges

Symptoms of advanced stages of muscular dystrophy such as diaphragm and chest muscle weakness, impaired airway clearance and ability to cough, and decreased heart function can increase the risk and severity of COVID-19. Using telehealth visits to maintain communication with your healthcare providers can therefore be helpful and a safe alternative.

Research supports the use of telehealth visits to replace in-person visits whenever possible to collect patient information, discuss symptoms and condition progression, and renew prescriptions for patients with muscular dystrophy. Telehealth visits are also more convenient and eliminate the need to travel, which can be challenging for patients with muscular dystrophy who have compromised mobility.

It is recommended that patients with muscular dystrophy continue their current treatments unless specifically approved by their healthcare provider. Many patients with muscular dystrophy are prescribed corticosteroids and are at increased risk of adrenal gland damage if they suddenly stop using steroids.

The need for physical therapy should be evaluated on a case-by-case basis. Research supports the use of a rehabilitation program at home for managing optimal functioning of patients with muscular dystrophy. Home treatment should focus on:

• managing muscle contractures through stretching, positioning, and using standing frames
• exercises to improve muscular strength and endurance
• respiratory management

Stretching is one of the most important components of home treatment to prevent contractures of the hip flexors, hamstrings, and calf muscles to maintain functional range of motion needed to walk.

Limitations of Telehealth

Routine care for patients with muscular dystrophy includes regular assessments of the side effects of medications and other treatments on muscular, heart, and lung health. Certain tests, such as bloodwork, echocardiograms (EKGs), X-rays, and cardiac and pulmonary functioning tests must be performed in person.

In-person visits are also necessary for thorough physical exams, including specific neuromuscular components such as testing the integrity of your reflexes, muscle tone, and strength.

How to Prepare for a Telehealth Visit for Muscular Dystrophy

Telehealth visits for muscular dystrophy will generally be conducted over videoconferencing so that your healthcare provider can generally assess your physical appearance and functioning.

It is helpful to have a friend, family member, or caregiver accompany you during your telehealth visit to help answer questions your healthcare provider may ask you and assist you with physical movements for exercising or examination purposes.

The following tips can help you prepare for your telehealth visit:

• Make sure you have a working computer, webcam, and good Internet connection.
• Set yourself up in a quiet and well-lit area of your home so that your healthcare provider can hear and see you clearly.
• Keep a written log of your symptoms, medications, and any questions you have for your healthcare provider.
• Keep a pen and paper handy to write down any information, including future appointment dates.

Alternatively, if you do not have access to a computer with Internet connection, your telehealth visit may be able to be carried out over the phone.

What Happens During the Visit

You will connect with your healthcare provider through an interfacing platform that makes use of videoconferencing. The office of your healthcare provider will send you an email with a link to connect you to the platform that you will need to use at your scheduled appointment time.

During your telehealth visit, your healthcare provider will address the following:

• Your symptoms
• If you have had any changes or worsening of symptoms
• If you have been having any side effects to medications
• Whether you need to schedule lab work or tests
• Changes to your medications or refills of prescriptions
• Plan for follow-up visits either in person or continuing with telehealth 

A Word From Verywell

Taking care of your health and managing muscular dystrophy should continue throughout these unpredictable times. When in-person visits are difficult to attend or when virtual visits can effectively replace office follow-ups, consider using telehealth visits to maintain communication with your healthcare providers and continue your care throughout the COVID-19 pandemic.