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Archive: March, 2016

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What do these words mean?

tumblr_nhtunqK0Ow1u60tx6o1_1280When you or a loved one is first faced with a diagnosis of a neuromuscular disorder explanation of the disorder and what it all means is of extreme importance.  Understanding all the terms can be daunting and confusing.  So we’ve gone on the hunt for some words that you may hear and have translated them into simpler, more understandable terms.

Know of any others?  Comment below!

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Seven Things I’ve learned since being diagnosed

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Being diagnosed with a disorder is hard. You have this hole in your heart and you know it’s going to be there forever. You can’t go back to how it was before. You can’t even imagine that life anymore. It’s been taken away, along with everything else this disorder carries.
The first signs of muscular dystrophy came when I was 13 years old and I wasn’t diagnosed till my early twenties. What I’ve learned in between have become a handful of lessons. A life full of trial and error, defeat and hope.

  • Don’t hide from the world. When I was first going through the early stages of this progressive disorder, I would just walk through a crowd and hope nobody saw my swollen heart. I hoped they couldn’t hear it screaming silently within me. Going out was stressful. My body was changing and nobody knew it but me. I wanted to ignore it and pretend it wasn’t there, but time proved that impossible. I lost myself for a while. I can’t lie about that. On the outside, I didn’t appear any different; but on the inside I was struggling. But now I want nothing more than to be seen and for my voice to be heard. I’ve learned not to fight with my differences. I’ve learned to make my life as beautiful as possible and to always have an imagination. There is no sense in trying to run or hide from your problems. There is no point in shutting people out. Give yourself life, even with all the weight that you carry. (more…)
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The STEADFAST research study and how you can participate

Credit: Dr. Doug McKim, Respirologist, Ottawa Hospital Rehabilitation Centre

Credit: Dr. Doug McKim, Respirologist, Ottawa Hospital Rehabilitation Centre

Not all research studies require participants. Some, however, do offer the chance for the public to participate, and the Stacking Exercises AIDS the Decline in FVC and Sick Time (STEADFAST) study is currently looking for people to participate in its work on breath stacking techniques and Duchenne muscular dystrophy.

moveit! asked STEADFAST’s principal investigator, Dr. Sherri Katz of the Children’s Hospital of Eastern Ontario (CHEO), some questions about the study, what it involves and how people who are interested can participate.

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Stay safe! Home fire safety for people living with disabilities

11745445_646883135412038_7371745398461155567_nThe commitment of Canadian Fire Fighters to individuals affected by neuromuscular disorders goes beyond fund-raising—they also care about your well-being.

Fire Fighters across the country are continually educating Canadians about fire and life safety issues. They particularly want to ensure that people living with neuromuscular disorders are aware of how they can reduce the impact of a fire threatening their homes.

That’s why the National Fire Fighters Relations Committee (NFFRC) provides information that you can use to develop a game plan for dealing with emergencies in your home. Consider applying the following tips, especially if you are living with a disability that may reduce your ability to evacuate your home safely and efficiently in the case of a fire-related emergency.

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Team up for the 2016 Walk for Muscular Dystrophy

TheScientistsThe Walk for Muscular Dystrophy (#Walk4MD) season is revving up! Every year, hundreds of individuals and teams participate in Walk for Muscular Dystrophy events across Canada, joining together to work towards a common goal—raising funds and awareness for neuromuscular disorders.

Teams lie at the heart of Walk for Muscular Dystrophy, and we welcomed many great teams during the 2015 Walk season. Many teams get creative and arrive decked out in special team t-shirts or costumes, showing off their pride in each other, the Walk and our common cause.

One team that took it to the next level was the Scientists. Named for their work in “the Labs” (as they call the collection of four different labs at The Hospital for Sick Children (SickKids) and the University of Toronto where they work), the Scientists consist of graduate students, research staff and faculty who study various muscular and neurological disorders. Recent winners of Muscular Dystrophy Canada’s 2015 Ontario Regional Researcher of the Year Award, the Scientists will be returning to the Toronto Walk event for their third season. Their goal is to surpass their $5,000 fundraising goal from last year.

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