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The Victoria and Burnaby Walks for Muscular Dystrophy are Huge Successes!

IMG_3549 lighterWe did it! Muscular Dystrophy BC/Yukon just completed our first two Walk for Muscular Dystrophy events of the season- the Victoria Walk4MD and the Burnaby Safeway Walk4MD! They were was a big success, raising a combined total of over $70,000!

The Victoria Walk represented a major step for the BC team, it was the first Walk event organized by the team’s new Revenue Development Coordinator, Ethan Clow. It was also the first time the Victoria Walk took place at the University of Victoria. (more…)

Tips on the use and care of your non-invasive ventilation interface

Clinician-Fitting-Respironics-Full-Face-Mask-TWTo avoid complications and ensure that your non-invasive ventilation is working efficiently, be sure to take the following steps.

• Clean the interface (mask, nasal pillows or mouthpiece/straw) daily with dish soap and warm water, following the manufacturer’s recommendations. If your interface is not cleaned regularly, you may be exposed to bacteria or viruses and potential infection, and you will shorten the life of the mask.

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What is an Advance Care Plan and why should we all have one?

GENERAL_holding hands in circleAn advance care plan is a plan of action that comes into place when you can no longer make informed decisions on your own behalf. It is important to have a conversation with your substituted decision maker (or agent) in regards to the type of care you wish to receive.

By creating an advance care plan and sharing this with your health care team and family members, you will give them the confidence in the decisions they make for you. This plan may also include financial and legal plans for the future.

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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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