4th Annual UBC NMO Patient Information Day

Written by on November 17th, 2015 – No Comments


The UBC NMO Clinic and Research Program will be hosting a FREE public information day about NMO on November 28, 2015.  Meet us a the Djavad Mowafaghian Centre for Brain Health, Vancouver, BC.  The event is open to patients, family members, friends, caregivers, students/trainees or anyone interested in learning more about NMO. Lunch will be provided.  Please click here to register and for more information. Please share this with anyone you think may be interested in attending.

Note: Please register each person attending and their lunch preference.

If you have any questions or prefer to register by phone, please call Michelle at (604) 827-3111.

We hope you will join us!

WHEN: Saturday, 28 November 2015 from 10:00 AM to 4:00 PM (PST) 
WHERE: Djavad Mowafaghian Centre for Brain Health – 2215 Wesbrook Mall Vancouver, BC V6T 1Z3 CA 


Fast Forward Your MS Knowledge

Written by on October 27th, 2015 – No Comments

On November 14, 2015 at 1:00 pm we invite you to join us for an informative afternoon of expert commentary and discussion on current and emerging management strategies for Relapsing Remitting MS.

1) Learn from Specialist Insights on:

– Empowerment and living well with MS
– Therapy considerations
– Challenges that people with relapsing and remitting MS face (family planning and sexuality)

2) Participate in an interactive Q&A session with one of our Expert Presenters:

Daniel Selchen, MD, Head of the Division of Neurology, St. Michael’s Hospital MS Clinic, Toronto, ON; and

Rosalind Kalb, PhD, Director of the Professional Resource Center, National Multiple Sclerosis Society, New York, New York

This event will be happening on Saturday, November 14th at 1:00pm at the Toronto Botanical Gardens. For more details, please visit https://www.facebook.com/fastforwardyourmsknowledge


Register today by phone: 1-800-843-2438 or by email: fastforward@mssociety.ca

Can’t attend the meeting? Join our LIVE webcast of the event by visiting https://webex.com/login/attend-a-meeting (meeting number 662 018 728 password 12345)

Fast forward

A Medical Meme!

Written by on October 20th, 2015 – 2 Comments


1. The illness I live with is: Neuromyelitis Optica (NMO)

2. I was diagnosed with it in the year: 2012 (previously mis-diagnosed with MS in 2007)

3. But I had symptoms since: I was 12 years old.

4. The biggest adjustment I’ve had to make is: Dealing with fatigue, a lack of sensation in my hands & bouts of severe pain at the base of my skull.

5. Most people assume: There’s nothing wrong with me. Apparently, I look fine, no matter how much pain I am in.

6. The hardest part about mornings are: Waking up feeling just as tired as when I went to bed.

7. My favorite medical TV show is: M*A*S*H is a staple in my house. I never get tired of it. I also enjoyed HOUSE, MD & Nurse Jackie. (more…)

Why It’s Important To Vote

Written by on October 13th, 2015 – No Comments

It’s important to vote because it’s important to have your voice heard.


It’s ESSENTIAL to have your voice heard.

JuanAs people living with MS, or that have loved ones with MS, we are a marginalized community.
Our society, our cities, our transit systems, the economy and job markets and our educational opportunities are not designed for people with MS.

And yet we are living valid and legitimate lives and we deserve to have equal access to services, goods and full participation in society.

And how does that happen?

A change to the system. A change in the ways that elected officials and policy makers make decisions. A change in mindset. To a mindset that doesn’t think of accommodations or accessibility needs as after thoughts, or upgrades to systems or great ideas. But a mindset where the great idea is one that is right-off-the-bat accessible to everyone.

And that can happen in communities. That can happen at the micro-level. But often times, these ideaSLM1s require the support, resources and funds of governments.

So on October 19th (or in the advanced polls), please make sure you vote. And tell your friends to vote. Vote for yourselves. Vote for your friends and families. Vote for the community. Vote for those that can’t. But most importantly…

Vote to #endMS. Vote to increase support for caregivers. Vote for changes to the system so that people with MS are able to live independent lives, fully and actively participate in our society, and vote for a Canada where we are committed to caring for those that are disadvantaged and finding ways to get rid of those disadvantages.

Learn how to vote, where to vote and when you can vote by visiting the Elections Canada website.

Be Prepared!

Written by on October 6th, 2015 – No Comments

My neighbour’s fence, damaged in the storm.

A few weeks ago, Vancouver, BC and the surrounding areas were hit with a pretty substantial wind storm. It was a Saturday afternoon and I was home with my husband. I had a crock pot of soup I’d just started cooking and a loaf of homemade bread rising on the counter when without warning, our power went out.

I didn’t think was going to be any big deal-in the past, the power had only ever gone out for a couple of hours. I hoped it would come back on soon so I could continue with dinner preparations. Having recently moved, I had no idea where our flashlights were, but I did managed to scare up a bunch of tea lights. Then I realized that because we’re a house of non-smokers, I didn’t have any matches in the house to light them with. I ended up using a butane BBQ lighter which was almost empty to light them.


Join Amanda at MS Can’t Stop Me October 24-25th – Registration closing soon!!

Written by on September 30th, 2015 – No Comments

Capture1“When you start off with nothing, everything you get can seem like a miracle. The first time I walked up the stairs without a cane I couldn’t stop smiling. The first time I was able to jog or the first time I could walk without a walker, I thought my mother would never stop crying with joy, and I never wanted her to stop. But it took a long time to come to this realization. There is nothing wrong with being fully healthy, and many people who are considered in good physical condition do appreciate many things in life, but too often many people take too many things for granted.

If I’d never experienced literally not being able to get out of bed (because I’d fall over) I probably wouldn’t literally jump out of bed every morning no matter how tired I am. Life the second time around allows you to notice what your eyes were too foolish to see the first time. It is like re-living your past but with a chance to correct old mistakes. When I re-learned to walk, I made sure I walked properly. But most of all I learned to fully understand a word I had long forgotten: thankfulness. I am thankful that my disease is so manageable. I am thankful I have the family that I do. I am thankful there is so much being done to find a cure. I am thankful for a second chance.

This is the beauty of having relapsing-remitting Multiple Sclerosis: I get a lifetime of second chances. Not just one, but many and each time the privileges I am not guaranteed become more valuable then the time before.”


To meet Amanda and other young people affected by MS, join us at ‘MS Can’t Stop Me’, a free forum for young adults ages 18-26 happening October 24th and 25th in Kitchener Waterloo. Partners, allies and caregivers who are young adults are also welcome!! For more information and to register for the event please visit mssociety.ca/YoungAdultForum or call 1-800-268-7582 ext. 3170

Head Above Water

Written by on September 23rd, 2015 – 4 Comments

By: Andrea, guest blogger

make one’s way with difficulty.

Sometimes, to struggle is to feel the universe reminding us that we need to slow down, realign ourselves, and be more self-aware before we move forward.  Through self-awareness comes balance and endurance.  So, stay positive.  Stay strong.  Ask for help when you need it.  Remember that, you will find your way through this.

AndreaAt this very moment, I’m struggling.  Struggling to keep my head above water.  Struggling to maintain positivity.  Struggling to ignore the signs my body is giving me, telling me to slow down.  Struggling to live life the way I always lived it before; life and work first, mind and body last.  And this scares me, because I know if I let myself hit that wall at the end of this finish line, it’s going to look different than ever before.  And so, I remind myself that MS or no MS, I need to let myself heal and breathe.  I will not hit that wall.  I will not subject myself to the possibility of another exasperation of symptoms by unintentionally neglecting myself.  It feels like I’m failing, when really, I’m failing to see this is an opportunity to become stronger.  I’ve got you MS.  I own you.  You do not own me.

And now, what a moment ago was struggle, is simply a reminder that I need to stop, and take care of myself.  I may not feel like I am able to do as much as I was able to do before, but in reality, maybe I was doing too much, too poorly.  Now I am choosing to do less, and to do less well.

So, stay positive.  Stay strong.  Ask for help when you need it.  Remember that, you will find your way through this.  And you will feel better than ever before.

Sharing Your Story

Written by on September 8th, 2015 – 1 Comment

As long as I can remember I have been a storyteller. I remember in elementary school that I loved anytime we were allowed to write stories. One of my favourite classes in high school was Writer’s Craft. Storytelling is why I got interested in theatre and am now majoring in Drama Studies and even Sociology because I believe that through understanding each other’s stories, we can learn more about our society . And while my love for stories started in fiction, I’ve learned the power of hearing an individual’s personal story through non-fiction, microsociology and understanding the importance of diversity.

As well, I’ve learned through telling my own story. As a storyteller, I’ve been able to work through my diagnosis, treatment and continuous battles of having MS by knowing my story. And by shaping my narrative. I could have easily turned my life into one of self-pity when I was diagnosed. But I didn’t think that was a fun story. So I turned my diagnosis into a story of empowerment, advocacy and community.

Getting involved with the MS Society has given me a number of occasions to share my story of my diagnosis besides contributing to this blog.

The #MSMyStory video series was an amazing opportunity where I got to contribute to a youth-centric campaign where young people, like myself, that live with MS and have family that live with MS talk about the ups and downs of MS. It was incredible being part of this because I got to hear the stories of so many other young people. I got to see that I am not alone in this journey. While everybody’s MS is different, the narratives can be very similar.

I had the incredible opportunity to do an interview, complètement en français, with Radio-Canada. I’ve been learning French for sometime now and this was a personal point of pride for myself. While I didn’t have perfect French, I felt confident enough in my French, and comfortable enough sharing my story that it came easy to speak on air about living with MS. Click the logo above to listen to the story – click on “Vivre avec la sclérose en plaques” to hear my interview and that of Yves Savoie, president and CEO of the MS Society.

The coolest way I’ve been able to share my story (and really the coolest thing I’ve ever done) was being a speaker at TEDxYorkU this year! I’ve a huge fan of TEDTalks and being on the TED stage, speaking about living with MS and learning from vulnerability was incredible!

While sharing my story has helped me work through all the feelings and experiences I’ve had associated with living with MS, the most amazing part has been hearing the feedback, having people share their own stories and having people saying that they’re taking something away from my storytelling.

Storytelling creates a community. And having a community can making living with MS a little easier. Now that community can be a small group of friends and family, or the entire world.

Interesting read…your thoughts?

Written by on September 1st, 2015 – No Comments

I read this information below to a group of people the other day…found it interesting who agreed with which statements! This was from an article posted on the MS Society of Canada facebook page – my thoughts are below each comment… You don’t have to agree with them of course!

11 Things You Should Never Say to Someone with MS

1)  “You don’t look sick.”

–       I have often wished that I would have shaved my head when I was diagnosed … so I didn’t get this comment. The hidden part of this illness can sometimes be the hardest I find.

2)  “You’re still young enough to get better.”

– uh thanks?

3)  “I don’t know how you caught that.”

– Thanks, neither do I? so stop blaming my dad whose a farmer…I don’t need to blame someone in order to feel better

4)  “Don’t they have a pill for that?”

– they have a pill for everything … some are legal, some aren’t

5)  “I have a friend with MS and she never misses work.”

– that’s awesome! I actually have the flu today … not MS ha

6)  “You are progressing so positively, you must not have what they thought.”

– or I’m a rockstar!

7)  “You use it as a crutch.”








8)  “How did you get approved for disability and I didn’t.”

– my writing is easier to read … :)

9)  “My mom had that, and she exercised and now she is cured.”

– miracle cure …. Awesome!

10)  “If you wake up earlier, you could sleep at night.”

– probably true most days .. but today .. I’m exhausted … MS

11) “It could be worse.”

–       You’re right … it could be (I can’t say I disagree w/ this one 100%.)

–       There was a general consensus .. that when someone with MS tells you this, it’s more acceptable then when just a random person tells you this


What are your thoughts about these statements??

MS Can’t Stop Me – A Free Forum for Young Adults

Written by on August 25th, 2015 – No Comments

Do you have MS or have a family member with MS? Are you between the ages of 18-26?

If so, then join us on October 24 & 25 in Kitchener, Ontario for a chance to share and collaborate with your MS peers. Get comfortable telling your MS Story to different audiences, find out how to influence public policy as a young person, and get prepared to transition into the world of work while still managing your MS, or maintaining your role as a caregiver. MS Can’t Stop Me participants will learn valuable personal leadership skills and develop tools to become MS leaders of the future.


◆ Youth Advocacy Training Institute
◆ Deanna Matzanke – HR/Diversity Professional and Lawyer
◆ Kate Hodgson from 9-5 Narrative
◆ Members of the MS Society Youth Advisory Group
◆ And more!

WHERE: Holiday Inn Kitchener Waterloo Hotel & Conference Centre

WHEN: Saturday, October 24, 5:30pm (following the MS Connect 2015 conference) to Sunday, October 25, 4:00pm

All costs for this event, including Saturday night accommodation at the Holiday Inn, will be covered by the MS Society of Canada. You may also be eligible for a travel subsidy.

For more information or to register: visit mssociety.ca/YoungAdultForum or call 1-800-268-7582 ext. 3170

MS Can't Stop Me 2015 poster