• Captain Jack: A Canadian MS champion

    By Judith Kays

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    In 1976, Jack MacDuff led his curling team from St. John’s, Newfoundland to number one at the Brier – Canadian curling’s highest honour. At only 26 years old, Jack was on top of the world.

    A couple of years ago, Jack spoke at a sports awards dinner for youth. He stressed the importance of staying in the game:

    “Keep your head on straight and keep going – lean on your teammates and your coaches and you will be the best you can be.”

    The best that Jack is everyday reveals a strong-willed, thankful and witty man, who just happens to live with primary progressive multiple sclerosis. (more…)

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  • How to talk about MS after you’ve been diagnosed

    Diane sits quietly in the neurologist’s office collecting her thoughts. She’s just been diagnosed with multiple sclerosis. It didn’t come as a surprise; she recognized many of the warning signs and has known for a few years that something was off. Fatigue and heat sensitivity had tipped her off, but seeing double is what brought her to her doctor to seek answers.

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    And so began an endless series of tests, appointments and scans, which led her to this very moment: feeling oddly relieved to have an answer, even if the answer is MS.  As Diane leaves the hospital, her relief turns to fear: “What do I do now?” She runs through what she has to do next: learn more about this disease and decide whom to tell about her diagnosis. This was not going to be easy.

    Diane’s experience mirrors that of many people’s stories about being diagnosed: nobody wants to feel alone when they get the news. And as well intentioned as people are, sometimes you just need someone who understands what you’re going through.

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  • THREE’S A CROWD: MAINTAINING A RELATIONSHIP WITH MS

    19 October 2016

     

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    Jesse and Pat met at work, the way so many adults do after they graduate. On their first date, Pat introduced Jesse to rock climbing. On their second, they saw Jesse’s favourite band and danced all night. On their third date, they wandered city streets with a thermos full of coffee, laughing about how awkward it would be if their coworkers found out about their relationship.

    Eight months later, Pat and Jesse moved into a beautiful two-bedroom apartment and got a cat.

    That same year, Jesse started to feel burnt out. The couple agreed to be more active and eat more greens. They’d read an article that said green vegetables would boost their energy. Pat felt great, but Jesse started to feel even worse. He could no longer handle even the easiest rock climbing wall because his left arm kept going numb.

    A few months later Jesse was diagnosed with 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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  • 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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  • 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.

     

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    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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  • Abusive relationships: How to cope when you have a disability

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    When I was first diagnosed with MS, I became very disabled very fast. I became completely dependent on my husband, which frustrated him. I allowed him to take his anger out on me because I felt so helpless and guilty. He would go into fits about how his life was ruined and became very depressed. He started taking medication, which made it better for a while, but then one day he went off the meds and told me that if he had to take a pill to live with me, then what was the point?

    I would internalize all of his comments and think, ‘Look what I’ve done to him.’

    I was lucky to have a social worker take notice of the situation. She helped me realize that this was not my fault, that my disability was not in my control and that if my husband couldn’t deal with it, that was on him, not me. She helped me find a better support base. You need to reach out to somebody — a friend, a family member or someone at the MS Society — just for that confirmation that it isn’t your fault. That’s the most important thing. 

    – Anonymous

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  • Independence: learning to enjoy the ride

    Karen, diagnosed with RRMS in 2004

    World MS Day is a month from today. The theme this year is independence, so that got me thinking about what the word means to me.

    MS Bike 2015

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  • Talking about mental health

    by Sylvia Leonard

    Note: While the strategies we mention in this blog post are helpful tips for managing mental health, they are not treatments for depression or other mental health issues that can accompany MS. If your symptoms feel unmanageable, speak with your general practitioner or other healthcare professional about it as soon as possible.

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    What is mental health?

    According to the Canadian Mental Health Association (CMHA), “mental health is key to our well-being.” We can’t truly be healthy without it. It involves how we feel, think, act, and interact with the world around us. Good mental health isn’t about avoiding problems or trying to achieve a ‘perfect’ life. It’s about living well and feeling capable despite challenges.”

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