Mindfulness for Pompe Disease Caregivers

Mindfulness for Pompe Disease Caregivers
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As the caregiver of someone with Pompe disease, you know how physically and emotionally draining it can be to help your loved one with everyday tasks, partake in activities they enjoy, or — sometimes — to simply move about. A practice called mindfulness may help you cope.

What is mindfulness?

Mindfulness is the practice of being constantly aware of your thoughts, feelings, bodily sensations, and surrounding environment. Rather than rehashing the past or imagining the future, mindfulness means tuning in to what is sensed at the moment.

The Institute for Mindfulness-Based Approaches, which offers a stress-reduction program based on intensive mindfulness training, teaches that while you can’t always change your circumstances, you can choose your response to them. By being in touch with present thoughts, sensations, and emotions, you can gain a different perception of what you’re going through.

How can mindfulness help me?

Practicing mindfulness each day can help you perform your duties without becoming overwhelmed or overly stressed. It can help keep you grounded and at peace while allowing you to be of service.

Examples of structured mindfulness

Examples of structured mindfulness include body scan meditation, breathing meditation, and walking meditation.

Body scan meditation

Lie on your back with your legs extended and arms at your sides, palms facing up. Focus your attention slowly and deliberately on each part of your body, moving, in order, either from toe to head or head to toe. Be aware of any sensations, emotions, or thoughts associated with each part of your body.

Sitting meditation

Sit comfortably with your back straight, feet flat on the floor, and hands in your lap. Breathing through your nose, focus on your breath moving in and out of your body. If physical sensations or thoughts interrupt your meditation, note the experience and then return your focus to your breath.

Walking meditation

Find a quiet place between 10 to 20 feet (3 to 6 meters) in length, and begin to walk slowly. Focus on the experience of walking, being aware of the sensations of standing and the subtle movements that keep your balance. When you reach the end of your path, turn and continue walking, maintaining awareness of your sensations.

Simple mindfulness

There are also simpler ways to practice mindfulness. These include:

Paying attention

Try to take the time to experience your environment using all your senses — touch, sound, sight, smell, and taste.

Living in the moment

Try to intentionally bring open, accepting, and discerning attention to everything you do.

Accepting yourself and the person you are caring for

Treat yourself and the person you are caring for the way you would treat your best friend.

Focusing on your breathing

When you have negative thoughts, try to sit down, take a deep breath, and close your eyes. Focus on your breath as it moves in and out of your body. Sitting and breathing for even a minute can help.

Keeping a journal

Perhaps you would prefer a less physical mindfulness practice, such as keeping a journal — writing what you’re feeling and experiencing. If you want to go the electronic route, the Journey app allows you to write and store your journal entries in the cloud, and even add photos.

 

Last updated: June 30, 2020

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Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.
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Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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