• 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, so keep an eye out for the next half.

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

    Lizelle Mendoza (LM): I think I’ve always wanted to become a nurse. I started experiencing MS symptoms so young that I practically lived at the hospital, and I really admired how the staff took care of me so much. I remember my mom telling me that they were called nurses, and I told myself then and there that I wanted to be one when I was older because I really looked up to them.

    Juan Garrido (JG): As a kid, I always wanted to be a teacher. I thought it was really cool to be able to help people, and I really liked talking in front of groups, so I thought it would be fun to do that all day.

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    AP: Okay, so nurse, teacher… man, you were such focused kids! When I was a kid I wanted to be everything. I wanted to be the prime minister of Canada, I wanted to be on the Olympic softball team, and then I saw The Lion King in grade five and wanted to be an actor! I was all over the map. I’m so impressed with how focused you both were! Juan, after seeing your TED Talk, I can confidently say that you’d make a great teacher!

    LM: I totally agree. That talk was amazing, Juan!

    JG: Thanks! So we had all these dreams. When you were diagnosed, did that change at all? Did you change your path or anything?

    AP: After I was diagnosed, I couldn’t play softball anymore. I tried to play and realized I couldn’t anymore because I can’t run. But I actually did go on to pursue acting. I’ve had an agent and worked professionally as an actor. MS definitely stopped me from at least one of my dreams, but I can still be a coach!


    LM:
    When I was first diagnosed, I was fresh out of high school and I was definitely still optimistic that nursing would happen for me. It wasn’t until my third year of nursing school that the staff asked me to withdraw from the program when I tried to appeal a mark. I had failed a written exam by 1.3% because I didn’t answer one of the long question answers the way they would have liked. In retrospect, I think it had a lot to do with the impact MS had on my cognitive abilities, in particular the fact that I can’t always articulate my thoughts in writing. So last year I had to withdraw from nursing.

    JG: I’m sorry to hear that.

    LM: I’m not giving up hope, though. Nursing is still going to happen, it’s just going to take me a little longer.

    JG: For me, MS never directly affected my career path, but the week after my diagnosis, I also learned that I didn’t get into teacher’s college. So that was not my best week. I kind of spent the next few months in limbo, not really sure what my life was about. I had been so focused for so long, and everything got turned upside down so fast. So MS didn’t directly affect my career, but it definitely added so much anxiety. It was like, what’s happening? My life is falling apart. All of which led me to redirect my career path.

    LM: So Amanda, how have you had to adapt and change your career ambitions and trajectory because of living with MS?

    AP: Mobility is a big issue for me. I shifted my focus away from the things I couldn’t do because that list is really long and really upsetting for me. Instead I started focusing on what I can do. I stopped apologizing for being different all the time, and once I made that change, I naturally fell into acting. I had a relapse halfway through my theatre program, and I was told I would never finish. But that didn’t stop me, and that led to my discovery that there was a lot of backstage work I enjoyed doing.


    JG:
    For me, after that summer when my life kind of fell apart, I worked part time for York University and found a lot of support from my supervisors and bosses there. I started to realize that they had a job that involved mentoring and supporting students and being there for them, and that’s the thing I’ve always liked about teaching. What I’m doing now at the university administration is making sure students have a positive university experience. Because whether you’re diagnosed with MS or just having a hard time getting through university, it’s important that someone is there for you.

    LM: That’s awesome! Juan, can you just help me through nursing school? I wish you were here! You both inspire me in such a way that I don’t know how to put into words!

    JG: Thanks for that, but also you, Lizelle! I threw in the towel on my teaching dream, and that happened for a reason, but the fact that you’re just like, “No! I’m going for it!” is awesome! No matter how long it takes you, and wherever you end up, it’ll be great because you’ll have worked so hard to get there.

    LM: It has definitely been a struggle, and I’ve become really depressed sometimes. I’ve just decided not to let my MS get in the way of me achieving my dreams. Actually, I just received my acceptance into the Licensed Practical Nursing program at Assiniboine community college in Brandon, Manitoba that I’m determined to complete no matter what it takes!

    JG: Congratulations!

    AP: Juan, how do you deal with the question of when or whether to tell your employer about your MS?

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    JG: I think you once said, Amanda, that it’s always one of the first things out of your mouth, and it’s the same with me. The first thing on the volunteer portion of my resume is the MS Society, so it often comes up in conversation, and I’m always willing to talk about it because it’s such a profound part of my life. Being open about it and helping other people learn about it is my own personal way of coping with my diagnosis. Everyone processes things differently, so I would never expect other people to talk about it as openly if that’s not their way, but for me that’s always been an easy decision.

    AP: Lizelle, what about you?

    LM: I’m in the same boat as Juan; I’m super open about my diagnosis at work. I used to be really scared about what people would think of me, or whether I’d be stigmatized and looked at differently. But honestly, my employer has been really accommodating. Everyone knows how involved I am with the MS Society and sometimes someone will ask me why I’m so involved, and I answer, “Well… I have MS.”

    JG: It’s interesting that you said you were scared of the stigma or what people would think of you, because my first neurologist told me I shouldn’t tell anyone, especially at work.

    LM: You’re kidding!

    JG: Nope. He said, “Don’t tell too many people so you don’t have to deal with the stigma and all that.” That really didn’t help as I was spiralling during those first few months, because talking to people is how I deal with things. Eventually I let that advice go because I really was not feeling supported not being able to tell anyone, so I just told everyone.

    AP: You have to honour who you are, right? You have to take care of yourself. When I was student teaching, I met a guidance counsellor who had MS, and she said, “Don’t tell them until you get a job with a school board!” I was already nervous, but then I was terrified that I was never going to get work. But for me it became about how I have the conversation. If you can wake up and say, “I have MS” and you know what you want, what you need, and what you bring to the table, I think you have more control over the conversation.

    JG / LM: Same!

    JG: Have either of you ever had to ask for workplace accommodations or adaptations? I feel that’s such a different conversation than, “I have MS.” It’s, “Because of my MS, I will need XYZ.” Have either of you had to do that?

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    AP: The thing about MS is that it’s not your ability to work, it’s your capacity to work that’s affected. You can say that you have any disease, but once you have to involve them in what you need, they don’t want to take on any extra tasks. I walked into the conversation with my employer and said, “These are the things that I need: if it’s a good day, that’s plan A; if it’s a mediocre day, it’s plan B and I can come in but I might need you to relieve me for a moment while I take a break; and if it’s a plan C day, it means I’m sick and I can’t come in and you need to get a supply teacher to cover for me.” My employer realized that I had done all the work in creating the plan, and she was very receptive. Lizelle, what about you?

    LM: I have not had to go through with asking for any accommodations yet. I’m very open with my boss as well, but thankfully it just hasn’t come to that point.

    JG: Asking for accommodations wasn’t a concern for me until I had a relapse that lasted about two weeks. I moved back home to my parents’ place because I was so sick and couldn’t move. I ended up sitting down with my boss when I got back to work and made a plan for moving forward. Having that conversation was really helpful and since then I have been lucky and haven’t had to ask for a lot of accommodations, except for when I have doctor’s appointments and need time off. I think, though, that now that I know I need to have those conversations, I come into things immediately saying that MS is very unpredictable and what I need right now may be different from what I might need in the future.

    Stay tuned for part 2!

    On August 25, visit your local A&W for a Teen Burger and $1 will be donated to fund MS research in Canada. Since 2009, A&W has raised more than $8 million to support world-class MS research that is bringing us closer to a cure, and programs and services that help Canadians with MS live better lives until a cure is found.

     

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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:

    Why do we care- copy

    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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  • Single, ready to date, and living with MS: What you should know

     JuanGarrido

    “One time a date saw my phone reminder to take my medication. I hadn’t told them yet that I had MS, and wasn’t planning on telling them then. When they asked about it, it caught me off guard. Even though I’m very public about having MS, situations where I’m not prepared or have not intentionally decided to mention it can be very jarring for me. They didn’t react negatively to it, but it stayed with me because it felt like I had something to hide from them and I had been found out. Having MS – an invisible disease part of the time for me –  makes it hard to know when or how to tell people, especially new people and dates.”

     The awkward first date is a trope so routinely played out in movies and on television that most of us feel like we’ve been on ten before ever experiencing one ourselves. Waiting to find out if you’re likeable enough for a second date is straight up terrifying. The other side of the coin is equally scary: the decision to let a stranger into your life. Dating can often seem like a balancing act as you simultaneously try to sniff out red flags while remaining open enough to give people the chance to pleasantly surprise you.

    Stigma is often so subtle that people don’t always realize when they are perpetuating inaccurate assumptions about minority groups, including people living with disabilities. When you live with a disease or disability, dealing with inaccurate assumptions about who you are is (sadly) part of daily life. When a person with a disability begins dating someone new, he or she is sometimes put in the position of having to break through assumptions right from the start, in order to create an equal, long-term partnership.

    Talking about your MS is an entirely personal choice, one that can feel difficult when meeting new people and trying to date. The reality is this: it’s entirely up to you.  When you do feel ready to talk about your MS with a romantic or sexual partner – whether you’re new to dating or starting over after the end of a marriage or long-term relationship – here are a few tips to help you assert yourself and ensure you are establishing roots for an equal partnership.

     

    Fundamentals Of Caring

    From the movie The Fundamentals Of Caring

    Equip yourself with information about MS to share with your partner. In some cases, you’ll be put in the position of educating someone about MS, and having resources to share with them can help drive an informed conversation. The newly diagnosed section of our website has some tools that can help. You can also consult Multiple Sclerosis: The Facts You Need for more information.

    Set your boundaries before entering into a dating situation. MS and its myriad effects on you and the ones you love will be different than someone else’s, as will your experiences dating with MS. That’s why it’s important to determine your own set of needs, boundaries and desires.

    Practice self-care. Take a step back from dating if you become overwhelmed or discouraged. Focus on the things in your life that make you feel good. Practicing self-care is a habit worth forming, and it will carry over as a useful skill when it comes to maintaining a healthy relationship.

    Find a source of support. Whether it’s an online community like #ChatMS, the MS Peer Support Program or an offline group in your area, sharing your experiences and discussing dating with other people living with disabilities can help bolster your morale and confidence, which will help you assert yourself in romantic relationships.

    Screen Shot 2016-07-18 at 16.44.01Recognize power imbalances. People who lack awareness or education about MS may rely on what they know about disabilities, which is often what is represented in the media. We rarely see people with disabilities portrayed on television or in movies as desirable and autonomous people who own their sexuality, and this can sometimes lead to assumptions that people living with disabilities are non-sexual or non-romantic. This is of course not true! A person living with a disability may also feel objectified, which is when they are viewed as sexual only through the lens of their disability, rather than because of the whole of who they are. In either case, it’s important to recognize when you feel your identity has been reduced to your disability, so that you can decide how you want to proceed with a partner.

    An open dialogue wherein you feel comfortable and safe talking about your needs, desires and boundaries with your partner is the best way to avoid power imbalances. Your priority is feeling safe, heard and respected.

    Dating can sometimes be intimidating, but living with MS can make it even more so. Ask yourself: what is unacceptable to you? What are your deal breakers? Take the time to be sure you are with someone you trust. You deserve nothing less.

    We are here for you. If you need to talk, call an MS navigator at 1-844-859-6789.

     

     

     

     

     

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  • Taking a risk: Canadian Bone Marrow Transplantation trial

    29 June 2016
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    by Jennifer Molson

    Still, knowing what I know now, I would do it all over again.

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    I won’t sugar coat this: the trial was hell. For three years, between 2002 and 2005, my life was a series of questions, tough decisions, and uncertainties. My body didn’t feel like my own. At one point I was taking 129 pills a day, and my stomach lining was so eroded that I couldn’t keep food down for a year. Destroying your immune system is no easy feat. (more…)

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  • The bond between a father and his daughters: A conversation with Jeanette and Danielle

    Doug with kids
    We recently asked sisters Danielle (27) and Jeanette (23) about their experience growing up with their father, Doug, who was diagnosed with multiple sclerosis 15 years ago. Their devotion and love for their father is unmistakable as they light up with each question, laughing with one another and reminiscing about the good times they’ve shared as a family. Jeanette called us from their family home in Scarborough, ON, where she and Danielle live with Doug and their mother, Teresa. Danielle was able to join the call from the GO train on her way out of the city from work. Here’s what they shared with us.

    How old were you when your father was diagnosed with MS?

    Danielle: I was 12 when he was diagnosed.

    Jeanette: So that would have made me eight.

    What words come to mind when you think of your dad?

    Danielle: Bicycles, because he’s always on his bike. [Doug has been an avid cyclist in the Toronto MS Bike for years, and we thank him for that!] And sarcasm – we go back and forth with sarcastic remarks all the time. Our house is always so full of laughs. We always joke that there should be a camera set up in our house because there’s never a dull moment – it really helps that we all have the same personality.

    Jeanette: He’s very determined, but since he’s been diagnosed he’s become a bit stubborn – it must be the Leo in him. He’s also strong. He hasn’t stopped doing the things he loves doing since he’s been diagnosed. Even when we tell him to take it easy or ease up a bit, he’ll still do it but at his own pace.

    (more…)

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  • Dreaming big

    16 June 2016

    Guest post by Sam Grandmaison, MS Bike ambassador

    The year was 2013 and it was a busy one! I’d just registered for my first MS Bike and begun brainstorming a (now annual) fundraising event of my own, all while studying to be accepted into med school with the hope of someday becoming a neurologist. It was also the year my uncle Eric had to stop working because of his MS. Even though he’s lived with the disease for more than a decade, these last three years have really revealed to me how much his life has been impacted by the disease.

    Eric is the inspiration behind everything I do. Eric is the reason I’m on Team Fight.

    Sam and Eric

    My family moved to Northern Ontario when I was 7 which put quite a bit of physical distance between Eric and I, but made us a lot closer in other ways as we had to consciously commit to keeping in touch. He’s my godfather, so I always received cards from him on my birthday and we made sure to get together for a golf game whenever we could.

    Years later, when we were living back on the East Coast, I was amazed to see how my family rallied together to support my uncle as his health started to decline. He was home alone a lot so I started spending mornings with him when I could. We would usually chat about his son’s hockey and his daughter’s ringette – between the two of them, he practically lived at the arena watching his kids compete. He’s always volunteered his time to help manage his kids’ teams. He’s never played hockey himself, but he has a deep love for the sport – a true Canadian!

    (more…)

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  • Getting personal with a promising treatment approach to MS

    Multiple sclerosis is a deeply personal disease. No two people experience MS in exactly the same way, and while the underlying autoimmune event that attacks myelin is consistently at the core of the MS disease process, the signs, symptoms, and progression of the disease can vary enormously from person to person.

    Ongoing research is helping to expand the arsenal of treatment options for MS, while placing greater emphasis on a more personalized approach to treating the disease. The publication of the results from the Canadian Bone Marrow Transplantation (BMT) trial in The Lancet represents the culmination of an extensive and collaborative effort funded by the MS Society of Canada’s affiliated Multiple Sclerosis Scientific Research Foundation (MSSRF) to identify a potential treatment for MS involving stem cells. The trial involved a procedure in which selected volunteers living with MS were given high-dose chemotherapy to dismantle the disease-causing immune system, followed by transfusion of their own stem cells to rebuild a healthy immune system that no longer attacks myelin. Given the risks associated with the procedure, individuals who were selected for the trial were those experiencing highly aggressive, inflammatory relapsing-remitting MS that did not respond to available treatments.

    The study, titled “Immunoablation and autologous haemopoietic stem-cell transplantation for aggressive multiple sclerosis: a multicentre single-group phase 2 trial”, was led by Drs. Harry Atkins and Mark Freedman at The Ottawa Hospital. Drs. Atkins and Freedman noticed that, following transplantation of the stem cells, the participants showed remarkable improvements in disease course which were maintained over a long period of time. These improvements included the absence of new relapses and inflammatory brain lesions and, in some cases, lasting recovery of function.

    Read more about this treatment approach on Dr. Karen Lee’s blog.

     

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  • An open letter to our Prime Minister

    9 June 2016
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    Dear Mr. Trudeau:

    In its proposed Bill C-14, the Government of Canada introduces a vague criterion for eligibility to medical assistance in dying, a criterion which is nowhere found in the landmark Supreme Court decision to which the legislation responds. The requirement that death must be “reasonably foreseeable” in order to qualify for medical assistance in dying lacks clarity. This requirement may prevent those who face grievous, intolerable and irremediable suffering but whose death is not imminent from exercising their constitutional right. In doing so, it would shift unduly the burden of defining what is intended by this criterion through lengthy court battles to a person whose right potentially may have been abrogated.

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    Photo courtesy of CBC/Reuters

    The Government of Canada must not place this burden on people whose intolerable suffering is the very reason for this legislation. That’s why we are calling on the Government of Canada to seek clarification from the Supreme Court of Canada in a reference to determine whether or not the requirement at 241.2 (2) (d) of Bill C-14 that a patient’s death within a period of time is not too remote is consistent with Carter v. Canada.

    A reference to the Supreme Court in this matter has two significant advantages. It brings clarity in a timely fashion. By leaving the meaning of ‘reasonably foreseeable’ to be defined by the courts with the potential for appeals means such clarity could escape us for decades. Physicians and other health professionals deserve clarity in considering requests for medical assistance in dying. Placing the burden of decisions to permit medical assistance in dying on health professionals without sufficient clarity introduces the risk that many will opt to not grant the right to such assistance.

    Imagine for a moment living with insufferable pain, without the autonomy to move, swallow or speak, and with fatigue that makes even the smallest task overwhelming. For some, with very progressive forms of multiple sclerosis, such a life is intolerable.

    The MS Society of Canada respects and values the autonomy of all persons with MS in making decisions that affect the quality and outcome of their lives. That includes the choice to live a full and rich life in dignity in a place of one’s choosing with adequate and appropriate supports, surrounded by loved ones. And the choice to seek medical assistance to end one’s life, a right granted to Canadians by the Supreme Court of Canada in February 2015.

    The choice to be free of suffering, to peacefully die with the assistance of medical professionals, should not be taken away from those who are in greatest need of the choice because of lack of clarity in the legislation. Their suffering is cruel enough.

    Sincerely yours,

    Valerie Hussey, C.M., Chair, Board of Directors

    Yves Savoie, President & CEO

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