• MS hits close to home for a doctor and soon-to-be

    16 September 2016

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    Interview with Kate and Sam

    I recently sat down with two of our #MSBike ambassadors, who happen to both be affected by multiple sclerosis and are involved in the medical field. They talk about their experience with medicine, their take on MS research, and being a part of the MS community. Sam called us right after his last class of the day let out at medical school at the Université de Montréal, and Kate caught up with us between making dinner for her family and running off to a shift at her office where she works as a family physician. Here’s what they shared with each other.

    How has your connection to MS affected your life?

    Kate: Being diagnosed with MS has really forced me to reevaluate what’s important in my life. It’s been tough for me to slow down and focus on my family and friends, as well as the areas of work that are most important to me. I think most of us in medicine are type A personality – I’m really bad for saying I can do 1,000 things like covering another shift or learning session, but then it backfires. I used to be able to juggle these requests, but I can’t anymore and it’s made me realize that I need to slow down. I used to work full time, but now I’ve cut back to three days a week.

    Sam: I don’t have MS, but a little over 12 years ago, my uncle who happens to be my godfather was diagnosed. For a long time, it didn’t affect me because he was doing quite well. As the years went by, his MS hit him a lot harder and he had to leave a job that he loved as a result. That’s when I saw the disease really affect him and decided to do something about it. His diagnosis moulded me into an advocate for MS in my daily routine.

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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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  • Nutrition and MS: What we know about what you can do

    30 August 2016

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    People living with multiple sclerosis can benefit from a healthy diet, much like everyone else. While there is no one diet that is guaranteed to improve MS overall, there are some things you can do to help manage the many symptoms of this often complex disease.

    Living with MS sometimes requires a degree of adaptation when it comes to one’s dietary choices, but evidence of the impact of those changes on improving or treating MS are inconclusive. MS presents itself differently in each person, and much like anything else relating to MS, it’s important that you work with your MS healthcare team to determine what works for your personal needs. You may want to include a nutritionist as part of your healthcare team for some advice on how to optimize your diet for those MS symptoms you are dealing with.

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  • Our federal government wants to hear from you

    22 August 2016

    YOUR GUIDE TO MAKING YOUR VOICE HEARD

    by Benjamin Davis

    What does true accessibility look like? The ability to access one’s surroundings is crucial to living a life without barriers, but true accessibility is more than just a physical issue. There are so many issues that fall under the umbrella term “accessibility”: timely and flexible access to employment and income supports; quality medical care and treatments; reliable public transportation; education and counselling; support for family members and caregivers; workplace accommodations; and advancements in MS research leading to better symptom management and quality of life for people living with multiple sclerosis.

    An important thing is currently happening in government: federal representatives are working to establish legislation for accessibility, and you can get involved through a series of consultations. These consultations are a huge starting point for change, a very exciting sign of progress, and a meaningful step towards better inclusion of people with disabilities in our communities. People with episodic illnesses like MS should be a part of this much needed overhaul, and we encourage you to participate in the consultation process.

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  • When your life is just beginning: Living with MS as a 20-something, part 2

    18 August 2016

    Amanda, Juan and Lizelle have more than a few things in common: they are all unstoppable forces in this world and they’ve all faced the challenges of being a young person affected by MS. They are also all A&W inspirational champions and have worked hard to spread awareness of what it’s like to live with MS across Canada – which Juan will be doing for Burgers to Beat MS on August 25.

    We recently got on the phone with them to talk careers, ambitions, obstacles and successes. This is part 2 of the conversation – read the first part here.

    LM: I’m 27 years old, and I’m not in a wheelchair like my neurologist said I would be. I’m still as active as I was when I was 18 and able to accomplish the tasks I’ve been presented with. I think I’ve been successful in showing people that I’m just the same “normal” person as everyone else. Also, this summer, my boyfriend and I purchased a house! And that’s something I’m super proud of!

    JG/AP: Oh WOW, that’s awesome!!! Congratulations, Lizelle!

    AP: It’ll be 10 years this February since I was diagnosed, so I’m honestly most proud of having survived 10 years with MS! There are lots of things that are different about me since I was 17 but the core of me is still the same. I’m really proud that MS has not broken my spirit. Juan, what about you?

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  • When your life is just beginning: Living with MS as a 20-something, part 1

    17 August 2016

    Amanda, Juan and Lizelle have more than a few things in common: they are all unstoppable forces in this world and they’ve all faced the challenges of being a young person affected by MS. They are also all A&W inspirational champions and have worked hard to spread awareness of what it’s like to live with MS across Canada – which Juan will be doing for Burgers to Beat MS on August 25.

    We recently got on the phone with them to talk careers, ambitions, obstacles and successes. This is part 1 of 2. Read the second half here. 

    Amanda Piron (AP): So, Lizelle and Juan, as little kids, what did you always want to be when you grew up?

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  • Sexual dysfunction: Managing a common symptom

     

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    Intimacy and sexuality are important components of a healthy and contented life. Multiple sclerosis can affect sexual functions both directly and indirectly, but in either case, can impact quality of life. Symptoms can be broken down into the following 3 categories: (more…)

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  • MS Summer Camp: Where everybody knows your name

    4 August 2016

    What would it mean to you to be surrounded by people who understand you?

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    Multiple sclerosis in children and teens is not as common as it is in adults, which leaves many young people without anyone in their friend network who can relate to their experience with chronic illness. MS Summer Camp is where young people can meet others their own age who are dealing with the learning curve that is living with MS. It’s a place where their symptoms are understood and don’t set them apart.  It’s an environment where campers can relax and enjoy all the activities summer camp has to offer without having to explain or defend themselves to anyone.

    “I can’t go to the library without having to explain to five people what my life is about. They don’t sound well meaning, either; they tell me I’m ‘too young’ or ‘too pretty’ to be in a wheelchair, and it feels accusatory more than it does caring. I end up spending half my time explaining myself and my situation to people every time I leave the house. That’s not something most people have to deal with,” Anna says.

    For Anna’s mother Rebecca, camp means a week of not worrying about her daughter’s safety or well-being. “It’s great knowing she’s at a place where she doesn’t have to explain herself. She can just be there and experience it and have fun. Anna is a counsellor at another camp that is working hard to become more accessible, but we worry about how she’ll get around and how fatigued she’ll become navigating a space that wasn’t designed for her. We don’t have those concerns with her at Merrywood, [where MS Summer Camp takes place]. That place is set up for her, and she’s surrounded by people who get it.”

    Over the past few years, the importance of strong communities for young people living with MS has become increasingly obvious. In a conversation between MS Walk ambassadors Kayla and Lizelle, they talk about how much it meant to them when they were first diagnosed to be able to find an online community of people their own age going through similar experiences. Kayla was driven to create an online platform devoted to raising awareness about MS called Keep S’Myelin and runs a weekly conversation called #ChatMS with her friend Randy every Monday at 7pm Eastern.

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    Billy Talent drummer and MS advocate Aaron Solowoniuk runs F.U.MS, which is “trying to take that anger that comes with being young and being told you have MS and channel it into something hopeful.”

    Our federal government recently launched a Youth Council to involve young Canadians in decisions about our country’s future. It would be wonderful to see someone living with MS on the council who could represent the needs of young Canadians living with disabilities or an episodic illness. You can apply here until August 12 if you’re interested.

    The reality is that growing up and trying to fit in is difficult for everyone, but when most of your peers can’t understand your reality, it can be that much more challenging. Anna puts it like this:

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    Rebecca adds that, “Anna has to deal with lots of challenges during the year that are both emotionally and physically exhausting, and by the end of the school year she’s worn out by all of those challenges. But when she goes to camp and she comes back, she seems to have been revived. It changes her outlook, and she feels like she can meet the challenges of the year ahead because she’s absorbed all of these positive interactions with people who get her. She doesn’t have to defend herself constantly. People at camp understand what it costs her to get up and go about her daily life. They get her.”

    So how does MS affect your daily life? In what ways are you asked to defend or explain yourself to people you meet every single day? And what would it mean to you to have a week off from all of that?

    We’ll be live-covering MS Summer Camp on Sunday, August 14 on Snapchat, and it’s going to be great! Add us using our Snapcode to follow along and ask the campers questions!

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    Thank you so much to the Slaight Family Foundation, who fund MS Summer Camp so that all campers can attend at no cost to them or their families!

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  • Removing barriers: What does true accessibility look like?

    28 July 2016

    By Karen Scott

    Karen Scott was diagnosed with MS in 2010 and has successfully advocated within her neighbourhood to make space more accessible for people using wheelchairs and mobility aids. Through her grassroots approach to advocacy, Karen has successfully made her neighbourhood more accessible through the addition of curb cuts to sidewalks and an increase in the length of crossing signals.

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    I thought a wheelchair would mean the end of independence.

    Admitting that you need a wheelchair is hard. Very hard.  But once you come to terms with it, a wheelchair provides the same heady feeling of freedom that a driver’s licence gives a teenager – you can go anywhere, anytime, without asking anyone. (more…)

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