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Update: Respiratory Care Seed Grants

lungs

Muscular Dystrophy Canada has made it a priority to support research into areas that affect the quality of life of people living with neuromuscular disorders. One of the key issues that impacts on quality of life is respiratory health.  Through its focus on Respiratory Health, Muscular Dystrophy Canada has produced evidence-based resources such as The Guide to Respiratory Care for Neuromuscular Disorders, which is used by patients, families and clinicians across Canada and internationally to help guide care decisions.

Through the Seed granting process, Muscular Dystrophy Canada is supporting research projects that focus on enhancing respiratory health and quality of life in a range of neuromuscular disorders. The Seed granting process is now in its third year, with a number of new proposals currently being considered by a panel of expert reviewers. The results of this research will guide evidence-informed care, and will contribute to the timely and efficient translation of innovations from the research setting to patient care settings. Please stay tuned to the website this fall as we announce the successful projects!

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World Duchenne Awareness Day – Watch One Family’s Journey

When their two sons Ross, 20, and Finn, 16, were diagnosed with Duchenne Muscular Dystrophy (DMD), Michelle and Steve Beaulieu decided their family would remain the adventurous travelers they’ve always been. The family’s journey – from diagnosis to next destination – is a story of determination and what life is like for its two youngest children who rely on life support ventilators.

September 7 is World Duchenne Awareness Day. Please take some time to watch this video and see how this family sustained their love of adventure in the face of this challenging disease.

 

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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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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Strategies to Care for Your Breathing Muscles

There are three main reasons why caring for your breathing – respiratory – muscles is vitally important:

  1. They are needed to facilitate an effective cough
  2. Proper ventilation
  3. Reducing the risk of infection

Below we’ve pin pointed the respiratory therapies discussed in the ‘Strategies to Care for Your Breathing Muscles’ seminar that can be viewed below. Remember that coughing and removing secretions is of the utmost importance, and for more information please watch the playlist, read the Respiratory Care Guide, and speak with your doctor and/or Regional Services person. All of the therapies mentioned can also be found in the Respiratory Care Guide.

[youtube http://www.youtube.com/watch?v=lTSQ17lauPU&w=560&h=315]

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