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Archive: October, 2013

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Living with a tracheostomy: Scott Parlee

Scott_ParleeLiving with a tracheostomy: Scott Parlee is 42 years old and lives in Fredericton, New Brunswick, with his mother and father. Scott, who has Duchenne muscular dystrophy, has had a tracheostomy and been using a ventilator for seven years. He has relied on mechanical ventilation ever since a severe respiratory infection landed him in the ICU for two months. Luckily, his family has been a strong advocate for Scott and his care. When there were questions about whether or not Scott would be able to move out of the ICU and live at home, Scott’s father, Allen, made a strong case that the costs of home ventilation should be covered by the provincial government. Not only would home be a happier environment for Scott, but it would actually cost the health-care system less than if Scott had to remain in the hospital.

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Spotlight on Respiratory Care: Nicolas Reny

Nicolas Reny with tracheotomyIn April 2013, Nicolas Reny—a young man with Duchenne muscular dystrophy—caught a simple cold that became worse. While a respirologist prescribed some medication for the cold, he also recommended Nicolas startlung volume recruitment exercises. A respiratory therapist came to Nicolas’ house to train him in these respiratory exercises and to conduct a few tests. The therapist noticed that Nicolas’ blood oxygen levels were very low,that he was coughing a lot and that the medication hadn’t decreased his lung secretions.

On April 12, Nicolas was admitted to Cité de la Santé in Laval. After attempts were made to reduce his cough and lung secretions with intravenous antibiotics and bronchoscopies, Nicolas was transferred to the intensive care unit (ICU). In the ICU, Nicolas was intubated—a flexible plastic tube was passed through his mouth into his trachea in order to maintain an open airway and facilitate ventilation of the lungs using mechanical ventilation. He remained intubated for 12 days. His lung secretions were so abundant that the staff recommended that he undergo a tracheotomy, a surgical procedure that creates an opening for an artificial airway. Nicolas and his whole family were surprised that the situation had become so serious so quickly.

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BOO! Get ready for Halloween with these great wheelchair-friendly costumes

Halloween is the holiday where you can dress up, and change who you are for a day. Sometimes though, finding a costume that works for you can be difficult – especially when you need a device to get around. It may appear to be a challenge, but in reality it just takes a bit more creativity, and results in some really unique and amazing costumes!

Check out these awesome costumes! Click on the photo for more information.

Add some extra magic:

Magician's bunny

Show support for MDC’s biggest supporters:

Fire Fighter

For the daredevil:

Deep Sea Diver

Cinderella:

Cinderella

Hippie:

Hippie

Cleopatra:

Cleopatra

D.J.:

Disk Jockey

Construction Worker:

Construction Worker

For the prankster:

Out House

Classic Cowboy:

Cowboy

Ghost with a twist:

Ghost

Bumblebee:

Bumblebee

For the hockey fan:

Hockey Player

Classic Devil:

Devil

For more amazing costume photos check out Pinterest

Still looking for more ideas? This is a great one stop idea bank with ideas organized by theme.

Look for step-by-step instructions? Some great children’s costumes, complete with materials list and instructions, are at your fingertips.

Need some more tips with transforming a wheelchair or other mobility device into a great costume? Today’s Parent has some great tips to get those creative juices flowing!

Whatever you decide to be this Halloween, be safe and enjoy!

Happy Halloween!

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Phoenix: Winnipeg Walk for Muscular Dystrophy Ambassador

Phoenix-WinnipegHello! Bonjour! My name is Phoenix. I am seven years old, and am in grade two in French Immersion.  I love to read, ride my bike, dance, sing, play dress up, and do arts and crafts. Oh – and I have a rare form of muscular dystrophy called Nemaline Rod Myopathy. Surprised?

When I was born I almost died. I couldn’t breathe properly, eat, or even cry. I couldn’t turn my head as it was very heavy, so mommy did that for me.  I had some surgeries and was on a ventilator. Doctors told mommy that my chances of survival were very slim, and not to expect me to make it to my first birthday. If I beat the odds and survived, I would never be able to eat, walk, or talk, and most likely would have some sort of brain trauma due to oxygen issues.

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Make it happen

Ivana October blogExercising and eating healthy is easier said than done, especially after a long day at work/school or when a few too many macaroons are calling your name. I never had the desire to go to the gym or worry about what I was eating until after I was diagnosed.

Even before my diagnosis was confirmed, my doctor gave me a Pilates DVD and told me to exercise every day for three months and come back to him with how I was doing. I found that some of the exercises I could not do well even after three months, and some I had improved on in the time period. This is when it all began. When my diagnosis was confirmed, I had become so much more grateful for all that I had. I had one chance to live the best and most fulfilling life I could despite the curve balls thrown at me.

When you run into an obstacle you have to overcome it as best as you can. Do not let it destroy you. Sometimes you will work really hard and somehow still fail. This is life. But your character, as I mentioned before, is defined by how you stand in the midst of defeat than in victory. Know when this moment comes, that you should never give up. Bernard Baruch could not have said it better, “the art of living lies less in eliminating our troubles than in growing with them.”

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