Mindfulness for Sanfilippo Syndrome Caregivers

Mindfulness for Sanfilippo Syndrome Caregivers
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Providing constant care and supervision for a child with Sanfilippo syndrome can be an emotionally draining task for parents. Beyond handling physical challenges and medical demands, you must deal with your child’s emotional needs and the impact a protracted illness can have on your family. A practice called mindfulness may help caregivers cope with these difficult circumstances.

What is mindfulness?

Mindfulness means maintaining a moment-by-moment awareness of your thoughts, feelings, sensations, and your environment. It involves tuning in to what you’re sensing in the present, rather than ruminating about the past or focusing on the future.

A stress-reduction program offered by the Institute for Mindfulness-Based Approaches teaches that circumstances aren’t always alterable, so how you respond is key. Being in touch with your thoughts, sensations, and emotions can help change your perspective of your caregiving experience.

How can mindfulness benefit me?

Caregivers may be neglecting their own well-being for the sake of their  patient or loved one. Practicing mindfulness daily may help you perform your duties without becoming overburdened with stress. In fact, mindfulness-based stress reduction is a meditation therapy that originally was designed for stress management. However, it also can help people caring for patients with chronic diseases.

What are the types of structured mindfulness?

Body scan meditation, breathing meditation, and walking meditation are examples of structured mindfulness.

Body scan meditation

This involves lying on your back with your legs extended and arms at your sides, palms facing up. From toe to head, or head to toe, focus your attention slowly and intentionally on each part of your body. As you do that, be aware of any sensations, emotions, or thoughts.

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. Note when physical sensations or thoughts interrupt your meditation, then resume your focus on breathing.

Walking meditation

Locate a quiet place that’s 10 to 20 feet (three to six meters) in length. Start walking slowly, focusing on the experience. Throughout, remain aware of the sensations of standing and the fine, delicate movements that help maintain balance. Once you get to the end of your path, turn around and continue walking, while maintaining awareness of the sensations you’re experiencing.

How can I practice mindfulness?

Simple ways to incorporate mindfulness into daily living include:

Being aware: Intentionally use all your senses — touch, sound, sight, smell, and taste — to experience your environment.

Being present: Bring open, accepting, and discerning thoughts to the things you do throughout your day.

Being compassionate with yourself: Show yourself compassion. Treat yourself the way you would treat a good friend.

Taking a “breather’: Try to quell negative thoughts (even if only for a minute or two) by sitting with your eyes closed, taking deep breaths and focusing on your breath as it moves in and out of your body.

 

Last updated: July 28, 2020

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Sanfilippo Syndrome 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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