• Women in the changing world: International Women’s Day 2017

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    Women in Canada are three times more likely to develop MS than men. Women also face significant barriers to finding reliable information about their health; accessing quality medical services; and being prescribed treatment options appropriate to their specific circumstances. Additionally, when taking the Canadian workforce into account, women’s average incomes and earnings are lower making them more susceptible to poverty, which intensifies the barriers and hardship caused by MS[1].

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  • Why are people having so much trouble getting help?

    Today is trigeminal neuralgia awareness day – take a moment to educate yourself about the rare but exceptionally painful condition at http://tnac.org/tnac/ 

    By Jennifer Sweeney

    Photo by Elaine at Organic Acres and pulled from Jennifer's website: www.jennifersweeney.ca

    Photo by Elaine at Organic Acres and pulled from Jennifer’s website: www.jennifersweeney.ca

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  • How mayors’ committees and volunteer hours can lead to making a difference in MS research

    7 September 2016

    This summer was a memorable one for MS research. In June, we saw the results of the Canadian Bone Marrow Transplantation trial, which allowed Jennifer Molson go from a mobility device to dancing at her wedding. Dr. Ruth Ann Marrie was appointed to the newly established research chair at the University of Manitoba with a special focus on MS.  And researchers at UBC pinned down a molecule that permits the entry of harmful immune cells into the spinal cord in MS-like disease, bringing us closer to understanding the underlying mechanism of episodic illnesses.

    Jeannelle and Lauren, recipients of the 2016 John Helou scholarship

    Funding the next generation of MS researchers is how we will find the breakthroughs of tomorrow, and that’s what the John Helou Scholarship (made possible through the generous support of Pfizer Canada Inc. and Innovative Medicines Canada) is all about. Thanks to this scholarship, two bright young women will be supported as they pursue education that will allow them to contribute to MS research. From Red Deer, Alberta, Jeannelle Bouvette was diagnosed with relapsing-remitting MS less than a year ago, and from Georgetown, Ontario, Lauren Smith is a young woman whose mother was diagnosed before she was born.

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  • “Multiple sclerosis changed our families. Now we’re going to end MS.”

    6 September 2016

    Nearly 100,000 Canadians live with MS, but it also affects the children of those who live with the disease. A generation of young people are determined to change this, including Lucas Nystrom, who lost his stepfather last October due to complications related to primary-progressive MS; Nicholas Addesso, whose mother has lived with MS his entire life; and Matthew Lee, whose mother was diagnosed with neuromyelitis optica (NMO) when he was just two years old.

    Follow the leader scholarship recipients 2016

    Named the 2016 winners of the Follow the Leader Scholarship (made available due to the generous support of the KRG Children’s Charitable Foundation), these three are following in the footsteps of Allie Sherwin – determined to play a role in ending MS.

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  • Meet the original members of Team Fight: Evelyn Opal and Sylvia Lawry

    8 February 2016

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    Throughout history, women have fought for rights, freedom and power. We are fighters, and we know how to take action to effect change and achieve the things we want; we’ll be celebrating that fact on International Women’s Day on March 8.

    Today, we know that women are three times more likely to be diagnosed with multiple sclerosis than men. But MS will not hold women back – instead, we will fight three times harder to beat it.

    This is the story of two women who were affected by MS and chose to fight.

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  • Our top 5 tips for coping with cognitive changes

    13 November 2015
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    “When I was first diagnosed with MS, I developed little tricks to help me cope with cognitive symptoms. I’ll set alarms on my cellphone or text myself to remember things. The act of putting pen to paper has always helped me commit things to memory, so I keep a day planner. Expressing what’s on my mind is sometimes hard for me. Thoughts will be clear in my head, but they just won’t come out the same way when I try to articulate them.”

    – Lizelle Mendoza, diagnosed in 2007

    For some people, multiple sclerosis is an invisible illness. Cognitive impairments such as short-term memory loss, difficulty concentrating and altered moods can have a large impact on quality of life for people living with the disease and their loved ones. Research on treatments for cognitive impairment is ongoing, but cognitive rehabilitation with an occupational therapist is a great way to develop compensatory strategies for people who live with these symptoms. While coping strategies may not reverse the symptoms themselves, they can provide efficient alternative ways to perform tasks that have become difficult. Here are a few tricks for managing the cognitive changes due to MS.
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  • Your MS winter safety toolkit

    By Sylvia Leonard

    The cold season can make daily life especially challenging for people living with a disability. Weather-related limitations can present barriers to participation in everyday activities, and people living with MS may feel removed from their community during the winter months—which can exacerbate the physical and psychological symptoms of MS.

    Ice, snow and uneven surfaces can mean an increased risk of falling, heightened fatigue and difficulty getting around, among other challenges. While our communities have a responsibility to ensure people living with disabilities can remain mobile during our winters, there are also things you can do to stay safe throughout the winter.

    Scroll through the images below to view all 6 of our Winter safety tips.

    Winter storms also disproportionately affect people living with disabilities. Whether you’re working through snow in a motorized wheelchair or stuck inside your home as a result of the weather, it’s important to have a plan in place for winter emergencies. Things like power outages, floods, blizzards or ice storms each bring their own set of challenges—so we’ve also put together a basic to-do list to make sure you’re prepared for any number of winter emergency situations.

    Done! Time to partyand celebrate!

    Remember: support groups are good places for community building and information sharing. Join a support group to gain more strategies for getting around in winter from people living with MS.

    For more information on local support groups or adapted activities offered in your area, call your local MS Society chapter at 1-800-268-7582 (programs may vary according to location).

    Did we miss something that works for you? Let us know in the comments!

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  • Working in partnership to offer caregiver webinars

    Over the years I have worked for a number of different health charities. All do great work to provide supports and services and all work exceptionally hard to fundraise for these services and for the necessary research for treatments and cures. Over time, it became clear to me that while each health charity is unique in the cause it supports, there are some commonalities particularly in the needs of caregivers – and there may be opportunities to work together to more efficiently deliver services to a greater number of people. To that end, the MS Society of Canada approached two other health charities supporting people with neurological conditions: the Alzheimer Society and Parkinson Society Canada. Recognizing that there are many topics which appeal to all caregivers in the broader disease community, our three organizations have decided to partner to offer caregiver webinars. I see this collaboration as an opportunity for practice, idea and resource sharing as well as a way to potentially avoid the duplication of precious resources.

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    Following a survey administered by all three organizations through posting on the respective websites we were able to capture key caregiver needs and topics of interest. We convened two think tanks (one in English and one in French) made up of caregivers representing each organization to drill down further on what we heard through the surveys. I had the pleasure of participating in the English think tank; we asked for their input to distill down the survey content into their suggestions for topics and themes of caregiver webinars. Ensuring that the caregiver voice is represented in this initiative is critical to all three organizations.

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    The rich information provided by over 500 caregivers across Canada in the survey will not only help us define webinar topics but will also prove useful and insightful in supporting further initiatives for all three health charities. The experience so far of working in partnership has been truly successful – I can see doors opening up for additional collaborations and this partnership can be used as a model for future cooperation among diverse health charities. While each organization has strength in working independently, there is even greater strength in what we can accomplish for those we serve by working collaboratively when opportunities arise.

    Look out for our national caregiver webinars to be offered later in 2015 and 2016!

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  • You can do it: Make #CureMS trend on Twitter

    30 July 2015

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    Kayla Chatkiewicz has a goal: make #CureMS trend on social media tomorrow. As the creator of the Stop Drop Selfie for MS social media campaign, Kayla is no stranger to using social media to raise awareness of multiple sclerosis. This July 31 marks World MS Trend Day, an awareness effort that Kayla and Randy Patrick (founder of the Must Stop MS support group) began in 2013. This year they are setting their sights high and calling for an international effort to educate people about MS with the reach of Twitter, Facebook and Instagram.

    The best part of this campaign is that you can easily participate. This Friday, tell people what you wish they knew about MS: tweet a fact, share an article or video to your Facebook page or upload a picture to Instagram that illustrates your connection to the disease. But most importantly, use the hashtag #CureMS in all your posts and ask people to do the same!

    Join #TeamFight and contribute to the #CureMS conversation this July 31.

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  • Adapting your sartorial choices: Dressing for MS

     

     “Vain trifles as they seem, clothes have, they say, more important offices than to merely keep us warm. They change our view of the world and the world’s view of us.” –Virginia Woolf

    Multiple sclerosis can affect many areas of your life, and the disease may change how you do various activities. Choosing what to wear probably isn’t at the forefront of most people’s minds when receiving a diagnosis of MS, but clothing quickly becomes relevant to daily living when people experience certain MS symptoms.

    Adaptive clothing can serve as temporary fixes during exacerbations for people who live with relapsing-remitting MS. For people who have a progressive form of MS, clothes adapted for special equipment can help make life a little easier. Here are some MS-friendly clothing suggestions:

    1. Footwear

    If MS affects your balance and coordination, select shoes with significant “tread” on the sole rather than a smooth surface. If you experience numbness on the bottom of your feet, however, you may opt for a thinner sole to better “feel” the ground beneath you.

    1. Cooling wear

    For people with heat sensitivity, cooling clothing may provide some relief. Cooling clothing contains gel crystals that retain cold temperatures when they are wet; they come in various styles, from bandanas to vests. Scroll down for suggested retailers.

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    1. Side zip pants

    Adding an invisible zipper to the seamline along the sides of pant legs can allow for easier dressing and undressing. Side-zip pants are ideal for people using wheelchairs and scooters, as they eliminate the need to pull pants legs up; instead the pants may be placed around the legs, with a thin zipper closing the pants from calf to waist.

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    1. Shirts

    Shirts that can be pulled over or zipped may be better options than shirts with buttons, snaps or ties for people who experience symptoms that affect the use of their fingers, hands or arms.

    “MS progression resulted in permanent wheelchair use, and increasing upper-body impairment placed restrictions on my outside activities. This was compounded by a lack of available clothing for style, comfort, fit and freedom of movement. Modern adaptive apparel solved those problems for me; providing real clothing options for people with physical disabilities involves deeper issues of restoring dignity, self-confidence and personal autonomy.”

    — JULIE, DIAGNOSED IN 1979

     

    Here are some Canadian online shopping resources to get you started:

    Adaptive clothing

    http://www.izadaptive.com Izzy Camilleri’s IZ Adaptive line in Toronto
    http://www.ezeplus.com (French) for Mode Ézé Plus in Montreal

    http://www.ashleysadaptiveapparel.ca/ (Winnipeg, MB)

    http://www.debralynncreations.ca/ (Surrey, BC)

    Cooling clothing

    http://www.msolutions.org
    http://steelevest.com
    http://heatreliefdepot.com
    https://www.axizz.com

    How do you use clothing to make your life easier with MS? Use the comments section to let us know what you think.

     

    All photos sourced from IZ Adaptive.

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