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Archive: September, 2013

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Becker Muscular Dystrophy: Through the Eyes of Nancy Jackson

NancyJackson-blogI was born November 13th, 1961 in Smith Falls, Ontario. For the first seven years of my life, I was a healthy little girl who enjoyed playing and could not wait to attend school. Then, at age seven, I was diagnosed with Becker muscular dystrophy –  a progressive, muscle wasting condition. Here is my story.

                My grade one teacher, who had a daughter born with muscular dystrophy, saw the signs. In many ways I was like every other kid my age, but I was slow in sports, I would frequently trip and fall, and I had trouble getting up from a seated position.  I was sent to see a specialist at the Ottawa Civic Hospital, who did a muscle biopsy on my right leg and determined that I have Becker muscular dystrophy.

By the time I entered high school, walking was increasingly difficult, but I was determined to keep going without a wheelchair. I would leave each class five minutes early, so I could beat the crowds in the hall to avoid getting bumped into and falling over. Believe me, some days those school halls seemed a mile long. Stairs were becoming a struggle, so the school arranged for my classes to be on the main floor in the morning and on the second floor in the afternoon.  After I graduated from high school, I went on to study computers at Smith Falls Alternative School.

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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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Muscles in Motion: a labour of love

mim8-USE this one2010 marked the first year for Muscles in Motion. An event I had been thinking about for more than five years and it was finally happening!

In 2013, our third year, we tripled our donations and helped create more awareness for those affected by neuromuscular disorders.

 

I remember the day clearly when I received a phone call from the specialist. I was 18 weeks pregnant with my first child and my nephew Garrett had just been diagnosed with Duchenne muscular dystrophy. The specialist told me it was urgent that I get tested to see if I carried the specific gene. My nephew Garrett had been diagnosed with Duchenne muscular dystrophy, and our family was just learning what he was about to go through and there was no way I was getting tested even with all the information we had. I would support my child however it would enter the world. During this time my sister received her results and found she wasn’t a carrier after all, but there was a gene mutation when Garrett was developing. (more…)

PEI Fire Fighter volunteers to help others – as a Fire Fighter and Muscular Dystrophy Canada Supporter

Rod MacDonald

Rod MacDonald

Rod MacDonald is the chief of the East River Volunteer Fire Fighters from Prince Edward Island.  He has a full time job with Atlantic Enterprise Limited as a lines men and operator.  But that’s not all! Rod is also the liaison to Muscular Dystrophy Canada (MDC) responsible for organizing all the fundraising and awareness activities the department holds.  Rod has been fundraising with MDC for about 12 years, and  got involved in the leadership role in 2007.  He really enjoys being in this leadership position because, as he says it’s fun!  It’s become an adrenaline rush for him to challenge himself and the department to see how much money can be raised.  As well, it can be a fun team building exercise for the members to get together outside of fire fighter duties.

???????????????????????????????Muscular Dystrophy Canada is close to Rod’s heart due to his continuing support of the cause, and the friends he has  met along the way. Rod has a friend who has a neuromuscular disorder whom he and fellow department members have known for over 20 years . Rod says, “To see this person at 20 walking, and now confined to a wheelchair sometimes is hard to take. This is where I get my motivation to push harder and to get other departments on the island to fundraise.”

???????????????????????????????Rod cites the best thing that’s happened to him through his MDC work was receiving a heartfelt thank you from a father from Los Angeles, California whose  three year old son has Duchenne muscular dystrophy (DMD) during our Rooftop Campout. He explains, “ It just puts a lump in your throat. It is just amazing on how good news travels.”

Rod’s favourite event has become ??????????????????????????????? the Rooftop Campout.  East River’s first annual Rooftop Campout just happened on July 25 to 27th. Fighters braved the wind, rain and heat for 3 days camping out on the roof of the gas bar at the Ultramar and Robin Donuts at the Scotchfort Reserve on St. Peters Highway.  Rod spent both nights in the elements, and fellow Fire Fighters rotated through the other nights.  There were 14 men and women from the department assisting with the event by collecting donations, sleeping over and stopping by in the middle of the night to drop donations in the boot.  Several news outlets covered the event including CBC and The Guardian, the local newspaper.

???????????????????????????????The Rooftop Campout exceeded Rod’s expectations and he couldn’t believe the number of people who stopped by to thank the fire fighters for their efforts.  In 48 hours, the Fire Fighters raised $5,800 from the campout – what makes this even more remarkable is that the money was raised in a community of approximately 200 people.

Way to go!

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Never Lose Hope

Ivana-blog AugustThere are no guarantees or promises in life. We never know what is next; it is all a guessing game. One minute you are on top of the world, rising above all else. The next, you are at the bottom, struggling to pick yourself up. Life is tough. It is no secret that you will stumble and fall down. Everything changes. Life is full of change and to exist, it is inevitable. If there is one thing I want you to remember it is this: Never lose hope. Life is going to try and push you into many directions and it is normal to want to go down in the hole if you feel defeated. But your strength is not going to be measured by the impact of all your hardships in life, but the refusal to allow these hardships to dictate who you become. You and you alone are responsible for your own life; nothing else is or ever can be.

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