Suggested Strategies for Adults Living With Chronic Neuromuscular Diseases

Trying to balance your emotional, social, physical, and financial needs can be stressful. These strategies can help you reduce stress and put your energy into living as well as you can.

Emotional health

Caring for yourself. Focus on what you can do to make life better for yourself. Try to get enough rest and exercise, and eat a healthy diet. Learn about supportive therapies for Pompe disease and talk with your health care team about which ones are right for you. Educate yourself about Pompe disease so that you can be an active member of your health care team.
Setting your expectations. Accept that your abilities may change from day to day. Set some priorities and put your energy into doing the things that are most important to you. Seek professional counseling if you are having trouble coping with the impact of Pompe disease on your family relationships, daily life, or personal goals.

Work and social activities

Finding ways to keep working if it is important to you. As your physical abilities change, your employer may make accommodations that will help you in doing your job. For ideas about what kind of accommodations would best meet your needs, visit the Website of the Job Accommodation Network and click on “Individuals with Disabilities.”
Keeping up your social life. As much as possible, try to spend some of your day enjoying hobbies or interests and being with people you enjoy. If you cannot do a hobby as well as you used to, see if you might be able to do it differently. Or try new activities that use different skills and strengths.

Support from others

Learning how to ask for help. Ask family, friends, and neighbors for help with specific tasks like taking you to your health care provider, going shopping, or keeping your child company for an hour or two each week. Let others know you need their companionship, too.
Building a network of support. In addition to your circle of friends and family, reach out to religious groups, government and social service agencies, and health care providers in your local community who may be able to help you get home health care, equipment, financial assistance, transportation, or other services.
Seeking out other patients and families of people with Pompe disease for encouragement and advice. There are patient organizations around the world that can help you connect with people in your area. Learn more about support organizations >

Planning for financial needs

When you are facing the prospect of lifelong medical care, it is important to review your insurance plan to know what type of coverage you have. You may need to seek financial aid for medical costs and other expenses not covered by insurance. Financial assistance is available to help patients with Pompe disease and their families cover certain expenses, but it may take some persistence to find it.

Learn more about insurance >

Choosing the right equipment for your needs

Adaptive equipment helps people with Pompe disease stay mobile and enables them to be more independent. To choose the right equipment for your needs, be sure to get advice from your doctor, occupational or physical therapist, and other parents or people with Pompe disease. Think about how your needs may change over time and try out equipment before you buy it. The chart below lists examples of equipment used by people with Pompe disease.

The right equipment can promote independence

Activity

Adaptive devices

How they help

Communicating and being independent

Cellular telephone Computer

Intercom

Universal remote

Medical alert systems

Help you stay connected to the outside world

Make you feel safer and more secure in your home

Help you control electronic equipment in your home, such as lamps, TV, DVD player

Getting around

Foot splint

Folding cane

Scooter

Wheelchair

Adapted car

Provide support if you are able to walk

Help you stay active and independent if you are no longer able to walk

Sitting

Standing

Resting

Cushion

Seating shell

Stand-up chair

Hospital bed

Foam mattress

Increase comfort by taking pressure off weak muscles

Make it easier to get up from a chair or bed

Toileting and self-care

Grab bars

Pedestal sink

Handheld shower or adjustable height shower heads

Roll-in shower

Bath bench

Shower chair

Lifter

Raised toilet seat

Adapted toilet

Help you get to all areas of the bathroom

Improve safety

Afford privacy and independence

Where can I find more information and support?

Though Pompe disease is rare, there are patient groups and organizations throughout the world that offer information, advice, and support to people living with Pompe disease.