Pompe Discussion Driver

Have deeper conversations with your healthcare team

Step 1 of 7

  • Start
  • Symptoms
  • Day-to-day life
  • Treatment
  • Management
  • Tests & Appointments
  • Goals
Healthcare provider icon

This guide was created to help you outline your symptoms and organize your thoughts before speaking with your healthcare provider. Being prepared can allow you to have a deeper and more productive discussion about your Pompe disease.

Please note the following:

  • -This information is for your eyes only. No information entered will be saved or stored, however, you will have the option to print your personalized guide at the end
  • -If a section isn’t relevant to you or your upcoming appointment, you can click “Skip” and move on to the next section
  • -Throughout, look for the symbol to reveal definitions for certain words and terms. If you’re on a computer, hover over or click on the icon, and if you’re using a tablet or mobile device, tap or click on the icon

This guide was prepared on for an upcoming appointment with on at .

Step 2 of 7

  • Start
  • Symptoms
  • Day-to-day life
  • Treatment
  • Management
  • Tests & Appointments
  • Goals

Are you experiencing these common symptoms of Pompe disease?

Click on a category to reveal specific symptoms. Once you select a symptom you are experiencing, indicate how severe it is and how frequently you experience it.

Breathing/Lungs/Diaphragm

  • Shortness of breath and breathing difficulties

    Shortness of breath and breathing difficulties

  • Reduced ability to cough

    Reduced ability to cough

  • Sleep apnea

    Sleep apnea

Muscles

  • Muscle weakness

    Muscle weakness

  • Problems with walking

    Problems with walking

  • Difficulty climbing stairs or getting up from sitting

    Difficulty climbing stairs or getting up from sitting

  • Falling

    Falling

  • Loss of bladder or bowel control

    Loss of bladder or bowel control

  • Loss of balance

    Loss of balance

  • Exercise intolerance/​fatigue

    Exercise intolerance/​fatigue

  • Problems with speech

    Problems with speech

Bones/Joints

  • Osteoporosis (weakened, fragile bones)

    Osteoporosis (weakened, fragile bones)

  • Fractures

    Fractures

  • Scoliosis (abnormally curved spine)

    Scoliosis (abnormally curved spine)

  • Winging of the shoulder blades

    Winging of the shoulder blades

  • Hip dislocation/​weakness

    Hip dislocation/​weakness

General Pain

  • Nerve pain (most common in hands and/or feet)

    Nerve pain (most common in hands and/or feet)

  • Back pain

    Back pain

  • Other

    Other

Emotional Well-being

  • Depression

    Depression

  • Anxiety

    Anxiety

Digestive System

  • Poor appetite or feeling full after eating only small amounts of food

    Poor appetite or feeling full after eating only small amounts of food

  • Chronic diarrhea or chronic constipation

    Chronic diarrhea or chronic constipation

  • Difficulty chewing/​swallowing

    Difficulty chewing/​swallowing

  • Weight control/​management

    Weight control/​management

  • Inability to maintain weight

    Inability to maintain weight

Brain

  • Trouble thinking clearly

    Trouble thinking clearly

Something Else

  • Add another symptom

    Add another symptom

Step 3 of 7

  • Start
  • Symptoms
  • Day-to-day life
  • Treatment
  • Management
  • Tests & Appointments
  • Goals

How have your symptoms been impacting your day-to-day life?

Have you recently done any of the following to adapt to your Pompe symptoms? Check all that apply.

Other

Is there anything else about your day-to-day quality of life that you’d like to discuss with your healthcare provider? Below are a few conversation starters. Check the ones you’d like to discuss and type in any additional questions you may have.

Add another question

Step 4 of 7

  • Start
  • Symptoms
  • Day-to-day life
  • Treatment
  • Management
  • Tests & Appointments
  • Goals

Now, let’s get into how you may be treating your Pompe.

Though there are different treatment options for Pompe disease, let’s focus on how you and your healthcare provider may currently be treating your Pompe.

Are there reasons why you aren’t treating your Pompe?

Other

What other medications are you taking? List prescriptions as well as over-the-counter (OTC) and natural remedies.

Medication name Amount Frequency

Add another medication

Is there anything else about your treatment that you’d like to discuss with your healthcare provider? Below are a few conversation starters. Check the ones you’d like to discuss and type in any additional questions you may have.

Add another question

Step 5 of 7

  • Start
  • Symptoms
  • Day-to-day life
  • Treatment
  • Management
  • Tests & Appointments
  • Goals

Let’s get into how you may be managing your Pompe in addition to your treatment.

Management of Pompe disease may include treatment along with a nutritional plan and appropriate amounts of activity. Let’s focus on how you may be incorporating this into your management plan.

Is there anything else about your day-to-day quality of life that you’d like to discuss with your healthcare provider? Below are a few conversation starters. Check the ones you’d like to discuss and type in any additional questions you may have.

Add another question

Step 6 of 7

  • Start
  • Symptoms
  • Day-to-day life
  • Treatment
  • Management
  • Tests & Appointments
  • Goals

Let’s review your tests and appointments.

Because Pompe is a progressive disease, guidelines recommend regular monitoring.

Select the tests below that you’d like to discuss with your healthcare provider. You can choose whether you’d like to discuss your last results, schedule your next test, or both.

Forced vital capacity (FVC)

What do you want to discuss with your healthcare provider about the test?

Six-minute walk test (6MWT)

What do you want to discuss with your healthcare provider about the test?

HEX4

What do you want to discuss with your healthcare provider about the test?

Creatine Kinase (CK)

What do you want to discuss with your healthcare provider about the test?

Muscle ultrasound

What do you want to discuss with your healthcare provider about the test?

Dynamometer

What do you want to discuss with your healthcare provider about the test?

Antibody testing

What do you want to discuss with your healthcare provider about the test?

Liver enzyme testing

What do you want to discuss with your healthcare provider about the test?

Metabolic panel

What do you want to discuss with your healthcare provider about the test?

Other

Step 7 of 7

  • Start
  • Symptoms
  • Day-to-day life
  • Treatment
  • Management
  • Tests & Appointments
  • Goals

Let’s wrap this up by setting some appointment goals.

Remember that your appointment is your time to provide and receive crucial information about your health. Setting goals beforehand can help you take full advantage of the time you have with your healthcare provider.

What do you want to accomplish at your next appointment? Check all that apply.

Add another goal

How would you like to bring your Discussion Driver to your appointment?

Prepared on:

For my appointment on:

With:

Appointment time:

Goals

What I would like to accomplish at our appointment:

I have a question:

Symptoms

My symptoms include:

I want to be sure to mention:

Day-to-day life

I’ve noticed these changes in my day-to-day ability:

I’ve recently done the following to adapt to my symptoms:

I’d like to discuss:

Treatment

I currently treating my Pompe. I am on .

I am not on treatment because:

I am with my treatment.

I am also taking:

I’d like to discuss:

Supplementary management methods

I’ve made these changes to my nutrition:

I do these activities regularly:

I’d like to ask:

Tests and appointments

Can we talk about the following tests and/or members of my care team?