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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.

 

Then and Now

Living with Muscular Dystrophy has to involve a positive attitude. There are lots of obstacles with Muscular Dystrophy that include the loss of strength and mobility, loss of friends with Muscular Dystrophy, fear and depression. But there are ways to overcome this by becoming proactive and helping others with Muscular Dystrophy. Muscular Dystrophy Canada has provided me the opportunity to become proactive by allowing my participation in their fundraising events and Muscular Dystrophy Firefighter Conventions. Therefore it has provided positive energy for me and allowed my dream to come true as a public speaker.

I started speaking at 12 when I became a Muscular Dystrophy Canada Campaign Assistant which involved an interview for the annual Labour Day telethon to raise funds for Muscular Dystrophy. Although it did not appear on television it opened the doors for more opportunities for involvement with Muscular Dystrophy Canada. I participated in my first Muscular Dystrophy Firefighter Convention and did my first ever speech. The speech is one I will never forget. I was on stage after watching a comedian, which caused me laugh during my speech when I lost track from the notes I was reading from. But I was able to improvise and finish my speech. Furthermore I rebounded with a speech at a charity golf tournament for Muscular Dystrophy Canada to say thanks to the people for attending and the people that made it happen.  I have done four other presentations at Muscular Dystrophy Firefighter Conventions which included 2 speeches for the Muscular Dystrophy Canada career program named Bridges to the Future and 2 speeches about life with Muscular Dystrophy. The two speeches about my life story with Muscular Dystrophy have been successful that I have gone to the Justice Institute of British Columbia to talk to future firefighters about the firefighters’ tradition of fundraising for Muscular Dystrophy Canada. Speaking at an early age has given me the confidence to still speak at conferences and speaking engagements today. (more…)

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Family takes pride in being role models

Shabotovsky Family

The Shabatoski Family

Team Shabby has participated in the Saskatoon Safeway Walk for Muscular Dystrophy for six years. The Shabatoski family is at the centre of Team Shabby, including mom Jackie, dad Dean, Braiden, 21; twins Samuel and Emma, 10; and twins Tyson and Jackson, 7. Braiden, Samuel and Tyson are affected by Duchenne Muscular Dystrophy.

In 2013, Braiden was the Saskatoon Safeway Walk for Muscular Dystrophy Ambassador.  This was an honour for the family and a great way to include all the family’s friends in their Walk for Muscular Dystrophy efforts. Braiden takes his responsibility as role model seriously, especially as a role model to his two younger brothers. Braiden loves hanging out with Samuel and Tyson, encouraging them to keep their spirits up and enjoy life. He is around to answer their questions and help them through any struggles they may have. Braiden is dedicated to being available to his brothers, and raising awareness through the Walk for Muscular Dystrophy.

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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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Take a deep breath, but don’t take it for granted: Breathing and Duchenne Muscular Dystrophy

The following article appeared in the Ontario Physiotherapy Association’s newsletter.

There is a growing body of evidence that proper respiratory therapies and supports will improve life expectancy and quality of life for people with Duchenne Muscular Dystrophy (DMD).

  • In a study of 157 people with Duchenne muscular dystrophy, patients who were not ventilated lived an average of 20.4 years, and patients who were ventilated lived an average of 31.0 years. (Konagaya et al, 2005)
  • Respiratory failure in DMD often occurs as a result of the inability to cough during otherwise benign upper respiratory tract infections. The earlier that airway clearance is taught and practised, the less likely is early respiratory failure, pneumonia and death. (Finsterer, J., 2006; Bach,J., et al, 1997)
  • Ventilatory support results in improved sleep, improved well-being and a slower rate of decline of pulmonary function (American Thoracic Society- Consensus Statement, 2004, 2009).

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