Conversation

Written by on January 13th, 2016 – 3 Comments

By: Andrea, guest blogger

con·ver·sa·tion
känvərˈsāSH(ə)n/
noun
       the informal exchange of ideas by spoken words

Talk, discuss, rant, laugh, question, reflect, release, connect, bond, support. Imagine living for a year or a two without speaking to another human being. Imagine finding out the best news ever, and having no one to share that with. Now imagine finding out you have a life-changing condition, and never having the opportunity to share your thoughts, your fears, your hopes, your questions with a person who shares the same. Loneliness and isolation, waiting to be consoled by simple conversation. Talk, discuss, rant, laugh, question, reflect, release, connect, bond, support.

AdndreaDuring a conversation one night with a good friend, it suddenly dawned on me that I have never had a conversation with someone who has MS. How bizarre, really. I mean, I have endless conversations with neurologists and MS nurses, but never a conversation with a fellow MSer. Well, once I did have a brief conversation with an older woman with MS who lives in my community. However, that conversation was merely to discover “no, there are no MS support groups in our community at this time.” How is it possible that I, myself, have never noticed that I have not had a moment to talk with and listen to someone fighting the same kind of battle as I am? Not yet had a moment of connection?

I have so many questions and thoughts at this exact moment that are brewing inside of me. Some lean towards fear, some are just plain wonder. I couldn’t imagine having the opportunity to talk with someone who perhaps shares the same thoughts, or not.  Someone whose words have a little more authentic validity than the words of support I hear from the non-MSers who create my wonderful support network. For the record, all of who have a direct impact on the amazing and positive path I am taking with my MS, and none of whom I would ever give up. I hope you know who you are…

So, my question is, who do you talk to? And who wants to talk?

4th Annual UBC NMO Patient Information Day

Written by on November 17th, 2015 –

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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 

 

A Medical Meme!

Written by on October 20th, 2015 – 2 Comments

LelainiaLloyd

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 –

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

No.

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 –
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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.

(more…)

Head Above Water

Written by on September 23rd, 2015 – 4 Comments

By: Andrea, guest blogger

strug·gle
ˈstrəɡəl/
verb
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 –

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??

Gone On Vacation… And Bringing MS With Me

Written by on August 4th, 2015 – 2 Comments

AndreaI’m writing this on a plane, on my way home from visiting family. A lot of my relatives live on the east coast and it was a yearly trip when I was younger. This was the first time I’d been out for about 5 years and it was a great chance to see relatives and re-live childhood memories!

I’ve travelled a lot in the past 10 years or so, including teaching overseas, and travelling from there. I’m determined to not let MS stop me from experiencing the world. I’ve travelled even when I was out of remission at times, but for some reason it was a more difficult trip to pack for and plan this time.

Things have changed a bit, so when I packed to leave I had a suitcase almost full entirely of medical needs, including a large amount of food as MS related digestive issues are becoming very problematic, but can be managed by eating carefully. I also had quite a few “just in case” items like my cane. Complicating things further was that I drove with my parents one way and flew home, so that left me trying to plan and pack and re-pack for different requirements.

But the real point is that it was possible, although requiring a lot of planning, lists, re-packing and thinking through things I made it, I was there to see family, I waded in the ocean (even though the cold water hurt), I had some seafood and most of all was able to participate in a family vacation, and I lived to tell the tale!

I hope whatever you are doing this summer you are enjoying it! Happy Trails to all those travelling!

It’s so Hot…Well, no not Really!

Written by on July 28th, 2015 –

So I know that I have been posting a lot about “my fitness journey” lately.  Well this stays true to that theme!

I did in fact run in a 5km “fun run”.  My goal was to try and run 4 out of the 5 kilometers.  I ended up doing intervals, 4 minutes jogging and 1 minute walking, and they ended up routing us wrong so I ended up jogging 7 or 7 and a half kilometers. I’ll call it a success!

I’m still running and following a program.  I get frustrated sometimes because I’ve been running for about 2 weeks now and still am not able to jog 5km, but I have to keep reminding myself that this is progress, and besides it’s pretty awesome that I can run at all!

I’ve certainly run into some stumbling blocks (no pun intended!) After a few minutes of running, my legs go numb and it feels like running on knives each time I step down, but I can keep going, so I do!  As it’s getting warmer the heat is causing more of an issue.

I’ve been thinking of trying the cooling clothing for a while, and after reading the article in the MS Canada newsletter I decided to give it a try.  I was unsure of what would suit my needs best, but settled on a belt as I thought it would move best while exercising.  I have found it allows me to exercise for longer, and I tend to go further with feeling in my legs.  Anything to keep me running for longer!  I really enjoy it!