Your Daily Routine With Late Onset Pompe Disease

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by Mary Chapman |

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While the effects of late-onset Pompe disease on everyday life are far-reaching, there are steps you can take in your daily routine to help ease these difficulties and work around your limitations.

It just takes some advance planning, a little bit of creativity, and perhaps some adaptive equipment.

The following are some tips for new strategies to make your daily routine a little bit easier.

How can late-onset Pompe disease affect your daily routine?

Pompe disease is a rare genetic disorder characterized by the buildup inside cells of a sugar molecule called glycogen. This buildup impairs the working of different organs and tissues, especially the heart, respiratory, and skeletal muscles.

There are three types of Pompe disease. About two-thirds of patients have late-onset Pompe, which may first appear in late childhood, or even in your teenage or adult years. This type of disease is often milder and progresses more slowly than the infantile forms.

Muscle weakness, especially in the torso and legs, often is the first symptom of late-onset Pompe. As the disease progresses, it may become more challenging to perform daily activities that had been routine. You may develop a waddling or swaying gait and may find it difficult to stand after sitting, running, or climbing stairs.

Learn new strategies

While late-onset Pompe affects each patient differently, everyone can learn new strategies for adapting. Depending on your symptoms, you can target different strategies that will work best for your situation. The goal is to allow you to live independently for as long as possible, and to participate in activities that you enjoy. It’s important that you discuss appropriate activities with your doctor.

Such strategies may evolve over time, depending on your needs and physical limitations. It’s key to be positive and to have an open mind about these changes while receiving support from your family, friends, and healthcare team.

Here are some things you and your family can do to make everyday activities more manageable.

Plan ahead

Allow for extra time to complete activities. For instance, preparing meals or setting out clothing the night before might make your morning routine less stressful.

Frequent healthcare visits may be affecting your work and social life. Planning schedules in advance, while taking into consideration the possible need for urgent medical care, can help you balance healthcare visits and other facets of your daily life.

It’s also important to schedule some fun activities into your daily routine. This can help improve your quality of life and have a positive impact on mental health.

Use special equipment whenever you need it

Consider integrating special equipment into your daily routine, which could help you in other aspects of daily living. Adaptive equipment such as walking aids, braces, and splints can allow you to maintain mobility and prevent joint deformity from increasing muscle weakness.

You also may need a special supportive bed and chairs, along with household modifications such as ramps, larger doors, an adapted toilet, and bathroom handrails. Non-slip mats and benches also can be helpful.

An occupational therapist can recommend certain adaptive devices that are designed to help make your daily routine easier.

Adjust your work

Speak with your employer about making workplace adjustments, which may help with your physical limitations. The Job Accommodation Network can help with questions about workplace accommodations.

If you’re able to continue working, perhaps you need to reduce your hours or adjust your schedule to offset times of the day when you are less fatigued.

Keep moving

If you’re able, and under the supervision of a physiotherapist, engaging in light exercise should be a part of your regular routine.

Such exercise — which may include walking, swimming, cycling, or strength training — may help maintain muscle strength. However, it’s important not to perform overly strenuous exercises as that may cause more physical damage.

Maintain your interests

It’s important to your overall health and well-being to maintain interests, hobbies, and social activities as part of your regular routine. Continue to nurture friendships and be open to new ones.

Consider meditation

Research has shown that the practice of meditation can positively affect patients’ experience with chronic illnesses such as Pompe disease. Consider incorporating it into your daily routine.

 

Last updated: March 2, 2021

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