• Reprioritizing my life to save it

    Kate Dog
    Guest post by Kate Thompson, MS Bike ambassador

    That first year I was diagnosed with MS was hard — hard in so many ways. I had never struggled like I struggled then. Life was chaotic. I had a very supportive husband, whom I almost never saw. Our “quality time” was spent waiting in emergency rooms or for MRI appointments. I had three wonderful children — who were children — with temper tantrums, constant needs, and a poor understanding of what was happening to their mother. I had a career, which I had worked so long and hard to get. I could no longer do many of the things I used to do, like staying up until midnight to finish up work or to make cupcakes for school parties, and then get up at 6 a.m. the next morning to make lunches. Well I could, but my next day would be a mess.

    Also, after my first relapse, my vision never fully returned, and I later learned it never would. What vision remained, worsened if I was tired. And then there was the dizziness. If I was tired, I was dizzy. If I moved too fast, was hot, upset or stressed, I was dizzy. I remember being at a work meeting one evening, talking to two experienced physicians and leaders in their fields, and walking through the conference hallways as we were talking. I couldn’t tell you what we were talking about — I was concentrating so hard on keeping my balance because my surroundings were spinning around me.

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  • “It’s sometimes hard to tell if it’s MS related, or just mom of three related.”

    Lori photo
    Guest post by Lori, MS Walk ambassador

    We had just moved to Calgary in 2004 – I had always called Winnipeg home, so moving to a new city was stressful. On top of that, I was raising my two-year-old son Ethan. My husband Ryan was working full-time and studying for a professional designation, which kept him very busy, and I worked full time as well. We spent our free time taking care of Ethan, and running him to swimming and skating lessons. We were also in the process of building our first house. They say that’s when MS symptoms come out, when you’re stressed. I lost my vision very quickly over the span of a couple days, first peripheral and then my entire left eye went dark. I immediately sought out medical help and was given steroids to treat the symptoms. At this point, I was told that multiple sclerosis was a possibility, but this symptom alone wasn’t enough for a diagnosis. I had an MRI nine months later and the results were good – no lesions. However, I was told that there was still a 25 percent chance that I would be diagnosed with MS in the next 10 years.

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  • “Research and the foresight of my neurologist saved my quality of life!”

    Darcie and Son
    Guest post by Darcie, MS Walk ambassador

    I like to think that I’m one of the fortunate ones because my neurologist put me on my disease modifying therapy (DMT) right away for my MS without hesitation. Since I’ve been on it, I haven’t had any relapses – it’s been seven years now. His theory was why wait? He’d seen good results in other patients who have multiple sclerosis and took this DMT, and because I hadn’t been on another medication he thought it would be the best option for me – I like to think that my neurologist positively changed my life. I take a once a month transfusion, and although it has its documented side effects, I haven’t run into any issues and it’s drastically changed my quality of life. So now I can still do everything I enjoy doing, but I just have to make sure that I don’t get overtired. I still play volleyball for an hour and a half twice a week, and I’m still able to work full-time, which I’m thankful for.

    MS research has improved my quality of life in terms of providing me with an available treatment for my MS. If it wasn’t for this DMT and the fact that my neurologist saw the potential for this drug to help me, I wouldn’t be where I am today. Both of my relapses before I went on this drug were quite severe, and I couldn’t imagine what my future would have looked like without it. But I do know that there’s no end all be all in terms of treatments, and that what works for one person might not work for the next. There’s also much more information about MS since I’ve been diagnosed.
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  • Volunteering, Eh?

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    This National Volunteer Week, we are thanking the many caring and compassionate volunteers who have dedicated their time, talent and resources in the fight to end MS. National Volunteer Week is a time to recognize and celebrate the power of volunteerism in our community and thank the thousands of MS Society volunteers who selflessly donate their time and energy throughout the year. (more…)

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  • “Living with MS, you need to put your own oxygen mask on first.”

    Sam family shot
    Guest post by Samara Bleiwas

    I’m a mom, wife, business owner and a volunteer – things don’t just stop when you receive a diagnosis of multiple sclerosis. What’s most challenging for me is that I never fully gained my vision back – my right eye is at about 30 percent, and what I see is equivalent to watching a blurry black and white movie. Most people get their vision back within three months, but after almost two years, I’m resigned to the fact that my vision will remain the same. I’m just a little bit more cautious when crossing the street and driving. It’s amazing how I got used to limited vision, and my brain just adjusted to my new normal.

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  • Taking a walk in my own shoes, just a different style

    7 April 2017

     

    Lisa and husband ditting down
    Guest post by Lisa Mackintosh

    The road to my diagnosis started when I saw my family doctor in October of 2014 because I was having issues with numbness and balance, which I originally thought was undiagnosed vertigo. It turns out I was in denial and had been experiencing a variety of symptoms for a while. When I ended up with numbness in my right arm, I was sent to get a cat scan right away. My doctor showed me areas of fuzziness on my brain and referred me to an urgent neurology clinic. Once at his office, the neurologist spent nearly an hour asking me questions like had I ever felt this, experienced that, or does this ever happen when I do so and so, and so on. Every one of my answers that followed his questions started out with “Yes… but.” The neurologist really made me think about when the initial signs of my MS started, and mentioned that he thought I might have had multiple sclerosis since my early 20s – when I had a case of optic neuritis – which makes sense now. If anything, I guess I had 20 some years of ignorant bliss! My third MRI, in 2015 confirmed it –  I had MS, and now I have an explanation of why my body acts the way it does without warning.

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  • “Slow and steady wins the race.”

    5 April 2017

    Guest post by Kim Cormack

    I used to love running – I’d run ten laps of Bob Daily stadium almost daily. Now, writing is my new form of running – I’ve been writing a paranormal fantasy series since 2009 and it’s become my saving grace. Some things I’d still love to be able to do is stand at my son’s high school graduation and my daughter’s graduation from University. Someday I’d love to be able to dance at their weddings. I’d love to travel with them, maybe go to Disneyland with my son or Rome with my daughter. I’m not sure how well I’d do with my MS walking in the heat… but I’d try.

    Years ago, I would lose track of time due to my MS. Hours would pass, and they’d be gone, but I was still just – there.  I couldn’t understand what was happening. I’d read about it, but I wasn’t capable of putting two and two together at the time. I couldn’t even remember where I was supposed to put a comma in a sentence. I was incredibly lucky to have support, but at the time nobody really knew what was happening either. You feel like you’re losing your mind. You walk in a room and have no idea why you’re there. I once went to the wrong town to visit someone… true story. It’s humiliating because it’s almost impossible to explain this to someone that hasn’t gone through incapacitating brain fog. In time, I gained some of my memories back and was able to learn back the things I’d lost through repetition, but in the back of your mind, you always know there’s a chance you’ll lose it again.

    Kim and friend (more…)

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  • Recognizing caring Canadians: National Caregivers Day

    4 April 2017
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    A CAREGIVER IS A PERSON WHO TAKES ON AN UNPAID CARING ROLE FOR SOMEONE WHO NEEDS HELP BECAUSE OF A PHYSICAL OF COGNITIVE CONDITION, AN INJURY OR A CHRONIC LIFE-LIMITING ILLNESS. 


    Caregivers are the backbone of our health care system and home care programs. They contribute an estimated $25 Billion of unpaid care annually.

    Canada has the highest rate of multiple sclerosis in the world and caregivers make it possible for Canadians living with MS to stay in their homes while receiving the care they need, an important consideration in assessing quality of life, especially given the lack of available age-appropriate long term care.  (more…)

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  • “This announcement marks an important milestone in MS research, and possible treatment options for people like me — living with progressive MS.”

    Guest post by Cory Turner

    We don’t get to pick when we’re diagnosed with multiple sclerosis, and like many others who’ve received the news, the timing for me wasn’t ideal. Having just moved to San Francisco a couple of years prior, my life was just finding its footing. My career was moving in the right direction – my wife was six months pregnant with our first child, and plans for a new home were on the horizon – life was good. It’s when double vision, and the associated unbalance invaded my world, made it clear that life for me and my family would begin to change. Agility and strength were now being replaced with fatigue and disruption, and my energy needed to be invested wisely. In 2005, feeling that something was off, my wife convinced me to go to the hospital where an ER doctor ordered a CT scan that quickly revealed spots on my brain. It was a fast diagnosis of relapsing-remitting MS that followed, which would develop into progressive MS as time passed. Surrounded by a flood of concern, this would represent the first of many forks in the road.

    Cory and wife
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  • When progress becomes a bad word

    By Chantal Milne

    Chantal IMG 2

    When I found out I was pregnant, I eagerly downloaded two pregnancy apps, bought three books on the subject and made it my morning ritual to get up and google, “Day X of pregnancy.”

    The amount of information available to us these days is vast to the point of being overwhelming sometimes. When it came to the progress of my growing baby, I wanted to know everything. Every. Last. Detail. I’ve always been a curious person, and at a certain point, I started thinking about how stark a contrast the progression of my pregnancy was in relation to my MS progression. There are no apps to tell me how I’ll be feeling next month with MS, that’s for sure. There are the obvious differences, like getting to meet your wonderful new baby versus finding out you have an annoying scary disease, but this idea of progression and how we know so much about pregnancy, and so little about MS, it keeps me up at night sometimes – I need to know more.

    Chantal IMG 4

    MS is a journey I wouldn’t wish upon anyone. Receiving the diagnosis can feel like an uphill battle, once you know, then what? I have a great health care team, but not one of them can tell me with certainty how my disease will progress, or whether or not I’ll be able to walk into the room and present a candle-lit birthday cake to my daughter on her fourth birthday. I’m optimistic and I’ve got my disease under control, I think. There are just too many unanswered questions when it comes to MS disease progression.

    I’ve found ways to deal with the anxiety of not knowing how my MS will impact me in the future, but I look at my daughter and I wonder how will I answer the questions she has? What if we knew what causes MS? What if someone could tell me how to stop my MS from progressing? What if someone could tell me if I would be walking in five years? Would that change how I live my life now?

    When it comes to MS, for me, not knowing is half the battle. That’s why I’m so excited about the MS progression study results. I can’t prevent the onset of MS in my life, it’s too late for that, but what if in 10 years we can stop it from progressing? What if we knew why my MS is different from the guy down the street? What if we could stop relapsing remitting MS from turning into secondary progressive MS, or better yet, end MS altogether!

    Chantal IMG 5

    I am hopeful, I am confident and I know that we can do this. We’ve got the world’s best MS clinicians and researchers working to answer these questions. By the time my daughter is old enough to ask me what MS is, maybe – just maybe – there will be an answer. That’s where I want my MS journey to go, and the MS progression study is giving me a road map to get there.


    To learn more about the cohort study, you can visit Dr Karen Lee’s blog or the FAQ .

     

     

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