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Managing Appointments for SMA

Spinal muscular atrophy (SMA) can impact different parts of your health and daily life. People with SMA must see many types of specialized healthcare professionals. This includes doctors as well as other professionals who specialize in mobility, nutrition, and breathing.

Managing many healthcare appointments can be overwhelming. Appointments can interfere with work, school, and social events.

Try to find a system to keep your appointments and schedule organized. Ask friends and family for help getting to the doctor’s or therapist’s office. Talk to your boss or teachers about how to balance appointments with work or school.

Types of healthcare appointments in spinal muscular atrophy

Physical therapy

Muscle weakness is the primary symptom of SMA. It can affect motor function and lead to problems like scoliosis and joint contractures. Managing muscle weakness is an important part of treatment.1

After SMA diagnosis, families should meet with a physical therapist. These therapists can assess range of motion and mobility. They can suggest exercises and equipment that improve mobility and delay complications. Regular appointments with physical therapists can help you monitor mobility and make changes to treatment plans.2

Occupational therapy

Muscle weakness and low mobility impact daily functioning for people with SMA. Occupational therapists are doctors who can help increase independence with daily activities. They can suggest devices and adjustments that improve independence. Regular appointments can help make sure devices and adjustments continue to work for you.1,2

Nutritional and feeding management

Nutrition-related challenges are common for people with SMA. They happen because the muscles used to swallow are weak and difficult to control. Many people must work with specialized doctors to manage these problems.1,3

Speech therapists’ training in the muscles and functions of the mouth and throat means that many of them can also assess feeding issues. They will make observations during feeding and perform a swallow study. This way, they can diagnose swallowing problems and help decide on therapeutic strategies.1,3

After swallowing problems are diagnosed, nutritionists help manage feeding issues. They can suggest diets or equipment that improve feeding. Regular visits to nutritionists ensure that you continue to use the most appropriate therapies.1,3

Breathing management

Weak chest muscles lead to breathing problems for many people with SMA. Breathing problems include difficulty coughing and clearing secretions. Food can also get into the airways when people with SMA eat. This is called aspiration. It can lead to life-threatening lung infections.1

After an SMA diagnosis, families will usually meet with a pulmonologist. This is a doctor who specializes in lung function. They can test lung function and suggest therapies to maintain breathing and keep airways clear. Regular appointments can then help monitor the progression of breathing problems and update treatment plans.1

Impact of doctor’s appointments on daily life

This is not an exhaustive list of all the healthcare professionals a person with SMA or their families might need to see on a regular basis. For most people, the diagnosis means many visits to many specialists. It can be overwhelming to schedule and remember so many visits. Appointments can be time-consuming and interfere with daily life.4

Children with SMA may need to be absent from school often to go to doctor’s appointments. Adults with SMA may have to take off from work because of frequent appointments. This can affect performance in school or at work. It can also take away time to socialize, impacting relationships with family and friends.4

Tips for managing appointments

Find a way to organize your appointments that works for you. Some ways to organize your schedule include:4,5

  • Asking loved ones to help schedule, manage, or attend appointments
  • Asking what you need to bring to appointments to optimize time with your doctor
  • Using electronic or paper calendars to record appointments and any notes
  • Setting electronic reminders for appointments
  • Keeping important health information easy to access
  • Asking your doctor questions to make sure you understand information
  • Spreading out appointments as much as possible
  • Asking your doctor about phone apps that integrate calendars, test results, and medication reminders
  • Talking to others with SMA about how they manage their appointments

Another important part of managing doctor’s appointments is balancing them with daily life. This may include scheduling them to minimize interfering with work. Some tips for balancing appointments with your personal and work life include:4,5

  • Talking openly with your boss or teacher about how doctors’ appointments may affect absences
  • Scheduling appointments at the beginning or end of the day, which is when doctors are usually running on time
  • Finding doctors close to school or work
  • Scheduling regular appointments for the same day and time every week
  • Asking for help with transportation and childcare during appointments

Keeping up relationships with family and friends can be challenging when much of your spare time is spent with different specialists or at the hospital.

It can be helpful for people with SMA and their families to schedule social visits at or nearby healthcare providers’ offices. You can also spend time with the important people in your life by asking them to come to appointments with you.

Remember that a diagnosis of SMA for you or your child does not make you a burden. Even if you can only meet them in a waiting room or hospital cafeteria, your friends and family will still want to see you.

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