Sara sends out a huge Thank You to Canada Safeway for “Making Muscles Move”

A Thank You address to Canada Safeway on the first day of their Making Muscles Move campaign:

Sara and her coach Robb after winning a Regatta

Sara and her coach Robb after winning a Regatta

I’d like to start out with a big THANK YOU to Canada Safeway and all Canada Safeway staff members for your continued support of Muscular Dystrophy Canada.  Through the Make Muscles Move Campaign you are making a huge difference in many people’s lives.

In 2011 I was awarded a Safeway Mobility Grant to help with the purchase of a modified wheelchair accessible van.  This van is set up with modifications that allow me to drive from my power wheelchair.  It has, without a doubt, been a game changer in terms of my independence.

Before I received my van, travel with my power wheelchair was restricted to local areas accessible by street, public transportation, or taxi.  Having the ability to now take my power wheelchair anywhere in the city, or really anywhere I can drive, has significantly increased my sense of worth.  Not only can I get to work, the grocery store, or sailing practices on my own, but I am also more independent upon arrival due to the availability and use of my power wheelchair.

Since receipt of my Safeway Mobility Grant and subsequent wheelchair accessible van, I have been able to re-license for independent driving, explore Kananaskis Country at the accessible William Watson Lodge, and reduce the strain on my family and care givers by being more independent throughout the day.

To many, grocery shopping, and sometimes even driving, may be seen as a chore.  To me, they are a sign of independence.  Thank you for helping me to regain independence in my life.

The Canada Safeway Mobility Grants and Scholarships are helping people like me access equipment and funding that increase our independence and quality of life.  Whether it be “chores” like grocery shopping and driving, or “work” by access to education and job markets, we are truly grateful for your contributions that positively impact our lives.  On behalf of all grant and scholarship recipients, Thank You Canada Safeway for you continued support of Muscular Dystrophy Canada and making a difference in our lives.

Sara is working as a full-time Engineer in Calgary, Alberta and races accessible sailboats with the Disabled Sailing Association of Alberta (DSA) in her free time.  Many exciting events are upcoming for the DSA, including hosting the Mobility Cup Regatta in September 2014.  The boats used are specially equipped. Hoyers are used to get members into the boats and then sail with full arm power (i.e. pull lines and steering on your own), with an electric winch to pull the lines, with the winch and electronic steering (like a power wheelchair joystick), or even with sip and puff (often used for high quadriplegics). Contact the DSA to learn about getting involved.

Visit your local Safeway store from July 31 to September 2 to donate to the Making Muscles Move campaign!

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You can turn it around

Ivana blog-heart signAfter being diagnosed I remember my mind racing and feeling lost. I had built my life into one large plan, everything being somewhat expected. I made plans to go to school, to travel, get married, have kids… I have to laugh at that now, because yes we live for what is expected but what changes our lives is what is unexpected. And it takes one thing- one small fraction of time, to change your course completely. There was a lot I went through in between then and now. Overall, I had four stages I went through. It started in slow motion as I watched everything I took for granted slip through my fingers and ended when I saw a light at the end of the tunnel.

The first stage I went through was denial. I didn’t want it to be true. It couldn’t possibly; out of the billions of people out there, why me? I ignored what my body was doing; I went on like nothing happened, like it was not affecting me.
The second stage was anger. You’re angry with your family, your friends, strangers who look at you on the street, and even angry with yourself. It felt like I had entered a battle that I was not prepared for, one that I did not want to fight.
The third stage was bargaining. I prayed that it would go away, that I would never do a bad thing again; I took back all the awful things I had done and said previously. I offered everything I had in hopes it was enough.
Then, the final stage happens when everything else has failed. All the anger has subsided, the bargaining has failed and you’re left to think about your feelings. So the fourth stage can be nothing else but acceptance. You accept that you did everything you could and let go.
Throughout our lives, many of us will face circumstances that seem unfair, painful, and traumatic. And, in the moment, that is true. But as we grow and evolve, we get to see that once we accept what happened, we have the power of choice to be able to redefine the meaning of it- to turn it around. There is always something to be found in what we have lost. The goal isn’t to ignore what is happening to you, it’s to become strong enough to live and eventually thrive through it.
Sometimes the reality of life is a hard pill to swallow. We don’t want to experience the bad or go through the hardships we are brought to. But I would not have it any other way. I guess I had to go through those stages, to lose myself in them, so I could finally find out who I was. Yes, in the beginning I realized that I may have lost something, but in the end, I knew that I had not lost everything.

Ivana was born in Sanski Most, Bosnia & Herzegovina but moved to Canada at the age of 3. She was diagnosed with LGMD a few years ago and it has forever changed her life.  She is a regular contributor and her blogs will be everything she has learned along the way and what she continues to learn today.

Thriving with a Disability – Health and Wellness Days: Halifax

pic halifax 5Muscular Dystrophy Canada and March of Dimes have been teaming up across Canada to hold Health and Wellness Information Days for people living with a disability. This time we hit Halifax on June 24, 2013 at the Bloomfield Centre for a full day of interactive booths and workshops.

The day was kick-started with two very inspiring stories from Penny Kitchen and our own Katie Manders, both from Halifax, demonstrating clearly what is possible when you put your mind to it regardless of whatever challenges you may face.

pic halifax 4There were workshops on the Importance of Respiratory care by Family 1st Medical, Aphasia Awareness, Healthy Eating, a panel discussion on life transitions and even a fun accessible Dance workshop by Happily Ever Active who follow the philosophy “Why let the Kids have all the fun?” We can’t forget the March of Dimes accessible travel support workshop! Check this out if you are interested in accessible travel. (Not sure where they are headed next, but I heard some talk of a Disney Cruise…)

pic halifax 2On top of the incredible workshops, there was an all day interactive Health and Wellness fair featuring booths from Nova Scotia Sport, Camp Brigadoon, Lawton’s Home Health (demonstrating their circulation booster), Creative Spirit East (showcasing Art done by those with disabilities), and Conductive Education.

pic halifax 3It was a packed day full of great information, workshops and an amazing opportunity for networking across disabilities! We had a good mix of health professionals, persons living with a disability and caregivers take part in the event.

Look out for information on upcoming events! We are heading to PEI on October 8th and St. John’s, Newfoundland on Oct 24th 2013.

Asha Noel-Hart provides Services Support in the Atlantic Region.

Team Little Man Austin on the go at Halifax Walk for Muscular Dystrophy

The Sweet Family on CTV

The Sweet Family on CTV

Team Little Man Austin was once again the top fundraising team at this year’s Halifax Walk for Muscular Dystrophy, raising an incredible $11, 637!

Austin’s parents, Cari and Bryan Sweet, are part of the Halifax Walk for Muscular Dystrophy Committee as well as being enthusiastic and active members of the Halifax Chapter Executive.  Attending their first Walk for Muscular Dystrophy after their son’s diagnosis with Duchenne Muscular Dystrophy (DMD) in 2011, they felt a sense of camaraderie and have become very involved in furthering Muscular Dystrophy Canada’s mission by raising money and awareness.

Austin Sweet

Austin Sweet

Austin’s father, Bryan, created a YouTube video about Austin and Duchenne Muscular Dystrophy that captured the attention of the Altantic region media.  The media attention allows so many more people to share in Austin’s life.  Austin was even interviewed on live TV!

It was a very busy year for Austin; he moved into his new accessible home, started school and began playing sledge hockey.  Austin was the 2013 Nova Scotia Ambassador for the Hop for Muscular Dystrophy, and the Sweet Family along with the Clegg/Bernard Family won Muscular Dystrophy Canada’s Atlantic Award for Family of the Year.  Austin has also had many challenges.  As the disorder progresses his muscles weaken, he has more falls but his spirit never dampens and he greets everyone he meets with a funny face or smile.

Team Little Man Austin

Team Little Man Austin

Despite Tropical Storm Anna’s heavy winds and pouring rain, an inspiring day was enjoyed by all at this year’s Halifax Walk for Muscular Dystrophy thanks to our sponsors, Fire Fighters, volunteers and especially to all our families and all those affected with a neuromuscular disorder, like the Sweet family who inspire us every day.

Congrats and thanks to Team Little Man Austin!

Special thanks to the Marriott Halifax Harbourfront; CTV Morning Live and Live at Five (Maritime’s top evening news program).