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Respiratory care for people with neuromuscular disorders

Respironics Full Life Full Face MaskAlthough neuromuscular disorders do not affect the lungs themselves, they can affect the muscles involved in breathing and coughing. As respiratory muscles weaken, it can become difficult to maintain adequate minute ventilation (the amount of air that must move in and out of your lungs in order to inhale enough oxygen and exhale enough carbon dioxide). This, in turn, can result in recurrent chest infections, chronic headaches, ever-present fatigue and increased muscle weakness.

While not everyone with a neuromuscular disorder is at risk of developing breath problems— Charcot-Marie-Tooth disease, for instance, mainly affects the lower extremities—someone experiencing breathlessness (a key symptom of breathing impairment) should speak to his or her health-care team to determine the best course of action.

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Stay Safe! How to build an emergency kit

StaySafeIn our last article we discussed the fundamentals of preparing your home in the event of fire-related emergency occurring. You can find it here.

This article will hopefully provide you with some specific tips that will give you the peace of mind that you have done as much as is reasonable and practical to prepare for that emergency in a somewhat more personal way.

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Mombourquette Family invite you to experience the #Walk4MD

WalkHi , we are the Mombourquette Family from Lantz, Nova Scotia.

We are happy to be the Ambassador family for the 2016 Halifax Walk for Muscular Dystrophy. My wife, Collene and I have 7 children- 5 boys and 2 girls age 10 to 24 years old of which 2 of the boys have disabilities. Trent, age 21 has Downs’s syndrome and our youngest, Trevor has Duchenne Muscular Dystrophy (DMD). Neither of our families have any history of either of these conditions so as a doctor put it, “We were struck by lightning twice”.

Well, in fact DMD  the most severe form of MD strikes much more frequently than lightening, affecting approximately 1 in every 3500 boys born.  Trevor’s DMD was caused by a new mutation which can randomly affect any child for reasons yet unknown.

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How I See It: Perspective of a child

How I See ItChildhood was a blessing. A complete blessing. The places I visited, the lessons I learned, and the moments I’ve never lost. When you’re a child you just see the world in a different light. I think, as we get older we start to build walls around that light and it becomes lost. But no matter how high you build that wall, the child in you will never leave your heart.

You walk around, holding your moms hand, looking both ways before crossing the street. Sometimes you run because you want to show everyone how fast you can go or swing really high in hopes when you jump off you might fly away. You jump in the frigid water, holding your breath and if you’re brave, sometimes you even open your eyes under there.

As a child you never feel like you stand out. No matter where you go, you don’t care who’s there or what they think. As you get older, you almost feel like an alien sometimes. You feel like there is nobody out there like you. Why must I stand out?, you think. How do you see me?

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