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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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Respiratory care education session held with Dr. John Bach

Dr. Bach persevered through Hurricane Sandy and was able to join us for an exciting day of learning on November 2nd at the Nova Scotia Rehab Center in Halifax. Muscular Dystrophy Canada was so pleased to provide this much needed learning opportunity for our clients and professionals in the Atlantic region.

Dr. Bach discussed his individual cases, success stories, his approach to non-invasive ventilation and his concerns with the use of oxygen when persons with neuromuscular disorders are in respiratory distress. Lori Gillies of Quality Respiratory Care was on hand with equipment, and together with Dr. Bach, measured blood gas levels, lung volume levels and demonstrated the use of cough assist machines on more than willing clients of Muscular Dystrophy Canada. One person describes the experience as “an amazing opportunity. It was informative yet scary to realize how little I knew. I had a few ‘aha’ moments.”

We appreciated both Dr. Bach’s and Lori’s passion and patience in discussing with individuals their situation and level of understanding about what should be done in relation to their respiratory health and care.

There was an excellent turn out of professionals working in the field from all parts of the Atlantic earlier that day. It was very encouraging to see their passion as well as their concern for providing the best and most up to date care for Respiratory Health.

Thank you to all those who attended our Respiratory Care Education Session at the NS Rehabilitation Center and for taking advantage of this learning opportunity and being proactive in improving your respiratory health!

We hope to hold more of these sessions in Atlantic Canada this coming year to go hand in hand with the long anticipated launch of our two respiratory care manuals; one for professionals working in the field and one for individuals living with neuromuscular disorders, that Muscular Dystrophy Canada has been working on together with Joe Foote of Quality Respiratory Care and Dr. Colleen O’Connell of the Stan Cassidy Centre for Rehabilitation. Look out for them!

For more information on Dr. Bach, visit his website.

Asha Noel-Hart is a Services Support in the Atlantic Region.

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