Posts Tagged ‘services’


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Dealing with Caregiver Stress


Being a caregiver is meaningful and fulfilling, but is also extremely stressful. Caregiver burnout is very common, and though this job is of the utmost importance, it is still essential that you take care of yourself; you cannot take care of others if you are not your best. Below we outline three essential areas in managing stress:




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More than just the winter blues?

STOCK_man-in-wheelchair-in-snow-SMALLDuring the winter months, people can start to feel down. Between the shorter days, the colder weather and the rush of the holidays, it can be a difficult time for many—particularly if you are living with a disability.

It is important to remember, however, that you are not alone. Whether you feel depressed or anxious because of bad news, a new diagnosis, the effects of winter—or if you live with those feelings every day—there are people who can help you through it.

In her article “Transcending Fear and Anxiety” in Quest magazine, Kristal Hardin describes how people living with neuromuscular disorders can feel depressed or anxious:

Muscular dystrophy chips away at our physical abilities sometimes so slowly that we don’t even know what we were physically capable of until it’s gone. This can be a challenge to both our mental and emotional stability. We may find ourselves distressed, despondent and dependent on any available helping hand.


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A Week in the Life: The Western Region Services Team

Here's Ted putting some things together for EIA back in August.

Here’s Ted putting some things together for EIA back in August.

“What exactly are you doing this week?”

It’s a question that we hear often, which is good because there is so much to do! To rise to the challenge and provide a better answer than just ‘information and referral’ services, Nate Schwartz (our main man on Vancouver Island) and I decided we would capture what were up to over a one week period.  It was fun to look back on how we are serving persons living with neuromuscular disorders and it’s our pleasure to show you some examples of our interactive and diverse days!

We were ‘out’ there to make those community connections. 

We truly believe that the lives of the people we serve are constantly changing and so we try to make as many community connections as possible.  Just last week Nate got in touch with a local physiotherapy clinic that needed some insight on how to provide better services to people living with a disability.  For myself, I was also asked to meet with various startup businesses on how they can make their services more affordable for people living on limited income.  These types of meetings are exciting to us as you get to see how so many different organizations are making a genuine effort to better serve our clients.

We connected people to our resources and community networks. 

If we don’t have the answer to your question, then we will find someone who does! Nate had a great opportunity connect a youth now starting his university experience with local campus resources and contacts.  I had the opportunity to work with a few educational leaders on how to connect their field staff with available MDC materials to improve their practice.

Nate (centre) with volunteers Debbie and George

Nate (centre) with volunteers Debbie and George

We supported our fundraising partners as “John(ies) on the Spot”!

Raising funds for our organization is a tough job and we value that service tremendously.  Last weekend the BC Services team had the pleasure of supporting the BC fundraising team during the annual provincial Firefighter Advisor Leadership conference.  We got to engage the firefighters, mingle with families, move tables and chairs, collect tickets and even install a raised toilet seat! It’s all in the name of team work—“You call, We haul”

We were constantly working behind the scenes so that others can succeed.

A great deal of the work we do in the community is a combination of hard work and preparation.  Nate’s an amazing motivator, so his webinar prep work and client follow up needs to be carefully thought out and planned. You just never know when someone will decide to kick it into high gear, so Nate always has to spend some time preparing to catch that lightning in a bottle!  For me, I’m working continuously to make sure conditions are optimal for the services staff so that they can be their own lightning in bottle.  Day in and day out, they serve our clients with grace, dignity and style, and it’s important to me that we provide them with that opportunity to be at their best with what we have.

So there you have it! It is equal parts of community engagement, team work, networking, planning and a 100% rock n roll.  If you’re curious about what we’re up to, just strike up a conversation with us and if you need a toilet fixed, we just might be able to take care of that too.



Ted Emes, Director of Services-Western Canada. To learn more about the services Muscular Dystrophy Canada offers, click here.

Nate Schwartz, Bridges to the Future Coordinator. To learn more about this unique program, click here.

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Canadian Neuromuscular Diseases Network Holds First Meetings

Group Photo Banff 2014On October 16 – 17, 2014 the newly formed Canadian Neuromuscular Diseases Network held its inaugural meeting in the beautiful Rocky Mountains of Alberta at the world renowned Banff Centre.

Seventy-five people were in attendance including adult and pediatric clinicians from specialty neuromuscular clinics from across Canada; basic science researchers with interests in neuromuscular diseases from across Canada; representatives from industry; and administrators and patient representatives from Muscular Dystrophy Canada.

Attendees were challenged to present a brief synopsis of their current work in basic science, clinical research, industry or clinical care in short talks ranging from 4 – 7 minutes.  A total of 47 speakers accepted this challenge with remarkable results!

The group was also provided with an update on the activities of the Canadian Neuromuscular Disease Registry.

Finally, the attendees were divided into 6 task force groups to address the future plans and action items for the Network around the following themes: Clinical Care, Research, Education, Engagement, Commercialization and Knowledge Translation.

Funding for the Network has been provided until March 31, 2017 by the Canadian Institutes of Health Research Institute of Musculoskeletal Health and Arthritis and Muscular Dystrophy Canada.

Next year’s meeting is planned for Sept 23 – 26, 2015 in Ottawa in conjunction with the 3rd International Conference on Neuromuscular Biology, Disease & Therapy.  If you are interested to learn more about this meeting please contact the conference organizing team at

More information on the Canadian Neuromuscular Diseases Network can be obtained by contacting Megan Johnston, National Director of Operations, at 403-210-7303 or

To learn more about the Canadian Neuromuscular Diseases Network, and to read an interview with Dr. Lawrence Korngut, of the University of Calgary, please click here.

Many Benefits of Services Support

people on same levelMuscular Dystrophy Canada recognizes that it can be difficult to find the right information and services when dealing with rare conditions such as muscular dystrophy. Our dedicated services team is available to help you find your way. Muscular Dystrophy Canada provides support by assisting individuals to find the right information, programs, housing options and community-based services to meet their specific needs.

Following is a glimpse of how important it is to have the support and insight to navigate through complex systems.

A registered client of Muscular Dystrophy Canada move from the East Coast to Ontario in November 2011.  The client was fleeing an abusive relationship and came to Ontario in hopes of starting over.  However once she arrived she could not find suitable housing, support for equipment and services to get health care.  After numerous phone calls to many service agencies, the client contacted Muscular Dystrophy Canada to see if we could help.

Within 24 hours of our telephone call we were able to arrange for a home visit to meet with the client in her temporary lodging.  After meeting, and deciding what was needed, a plan was put in to action for the client.

Through our partner agencies and networks the client was able to visit a “new” family doctor within a week of the call.  We also assisted in getting OHIP, ODSP and temporary housing, until permanent housing became available.

Next step was to get assistance to have her “new” home assessed to ensure that assistive devices could be purchased to make her home safe, and allow her to be independent.  After a call to CCAC and a few home visits the house was ready to go, next came the walker she needed to navigate the community.  Again the assessments were completed and a new walker was ordered. Equipment was covered through ADP and Muscular Dystrophy Canada’s equipment program.

On December 1, 2012 the client moved in to her permanent home.  She was approved for a fully accessible one bedroom apartment in a clean, bright building.  She was ecstatic to have her own “safe” home.

Her hope of starting over in a new province and a new life became reality.  She stated during our recent conversation that when she arrived a year ago she never thought she would have an affordable accessible home, a family doctor, referral to a specialist, access to assessments in her home and help to obtain the assistive devices and equipment she needed.

If you or someone you know can benefit from our support Services please contact us.

Karen Dunbar is Service Specialist in Ontario and Nunavut region.

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