Author Archive

Operation Med School 2016

Written by on May 31st, 2016 – No Comments

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On April 30th, I attended the Operation Med School (OMS) Conference at UBC as an Ambassador for the MS Society. The conference is a day-long event held annually for grade 12 students and undergrads who have expressed an interest in attending medical school. It gives them the opportunity to hear from and meet medical professionals to learn more. Each year, OMS chooses a charity to donate part of proceeds from the conference to. This year, they chose the Canadian MS Society.

Photo credit: Taryn Lencoe

Presenting about MS & NMO. Photo credit: Taryn Lencoe

I spent 3 days preparing a power point presentation on MS and NMO and the work the Canadian MS Society does. My friend Taryn, who works for the BC-Yukon Division, joined me at the conference for support. I spent the afternoon giving my half hour presentation four times-there were 200 students in attendance, so they were broken up into groups of 50.

I decided that it would be interesting for the students to get some hands-on experience about what it’s like to struggle with some of the symptoms of MS and NMO, so I bought along some props to help me illustrate my point. I had one volunteer from the audience come up and put a high heel shoe on their left foot and a swimming flipper on their right and then asked them to walk a straight line. The idea was to simulate what it would feel like to try and walk with a lack of balance (the high heel) and foot drop (the flipper). All of the students who volunteered were trying to hold onto the table for support and agreed that there’s no way they would be able to walk around campus for a whole day like that.

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Fresh Ink!

Written by on March 3rd, 2016 – No Comments

tattooSo…this happened yesterday afternoon! It was my Xmas gift from my son. I have been thinking about a third tattoo for some time now and yesterday I finally did it.

The design is a stylised ampersand. (The “&” symbol.) I love the symbol being the font/typography enthusiast that I am, but didn’t want to have the same tattoo that a zillion other people are walking around with. I came across this particular design and fell in love. I did some digging and managed to track down the artist, Beth Sicheneder. I sent her an email to see if she would give me permission to use her design.  She very generously gave me her blessing. It’s important to seek permission to use another artist’s work-It’s the right thing to do and personally, I believe in karma. I want to keep mine good!

I knew that I did not want this done in black ink with thick heavy lines. I wanted it to be subtler and more feminine. Ashley, the tattoo artist I’d chosen to do this piece understood exactly what I meant and suggested we use a tiny needle and dark grey ink.

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Trip to Toronto!

Written by on February 2nd, 2016 – No Comments
Me in front of the Toronto sign from the 2016 PanAm & ParaPanAm Games.

Me in front of the Toronto sign from the 2016 PanAm & ParaPanAm Games.

On January 18th, I flew off to Toronto to serve my 2nd term as a Community Representative for the Canadian MS Society. This year, I was assigned to the Clinical and Population Health (CPH) Committee, which deals with research related to mental health/quality of life research in relation to MS patients. It was really encouraging to know that researchers and clinicians are invested in finding ways of treating the whole patient and helping to address the unique mental and emotional challenges MS patients face living with this life-altering disease. (more…)

4th Annual UBC NMO Patient Information Day

Written by on November 17th, 2015 – No Comments

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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

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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…)

Be Prepared!

Written by on October 6th, 2015 – No Comments
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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.

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Vancouver ScotiaBank MS Walk 2015

Written by on May 25th, 2015 – No Comments

Yesterday was the Vancouver ScotiaBank MS Walk. This year. the walk was held at a new location, at The Plaza of Nations right along False Creek in beautiful downtown Vancouver. This meant that the route ran right along the seawall. It was a gorgeous walk for everyone who participated.

The turn out was fantastic-about 500 people showed up and there was so much to see-teams in costumes…

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Teams with signs…

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Teams whose participants were doing the course their own way…

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Catching Up!

Written by on April 28th, 2015 – No Comments

Page 17, MS Pathways March/April 2015

March was an insanely busy month. Just before I left for LA for NMO Patient Day, my husband and I faced an unexpected move. For added fun, I also had an accident that resulted in a fractured rib. It was not ideal to have to be purging and packing up an entire house in order to downsize and move, but somehow I did it. I am eternally grateful to my son and my husband’s co-workers (big burley construction guys) who came and did all the heavy lifting. We are now settled in at our new home, a condo on a beautiful greenbelt and it even has a pool. We LOVE our new home.

Patient Day in LA was a wonderful experience. There were NMO patients there from all over the world as well as NMO researchers and clinicians. I was invited to share some of the ways in which I advocate for NMO awareness through the UBC Interprofessional Health Mentors Program, as a Community Representative for the MS Society of Canada and as a blogger from Someone Like Me. While I wasn’t at my best, (my fractured rib was causing me a considerable amount of pain) it was really nice to have people come up to me afterwards and offer such positive feedback about the work I am doing. I really appreciated the support. I always feel so blessed to be able to serve and do the work I am most passionate about.

It’s amazing to think that the Guthy-Jackson Charitable Foundation was only founded six and a half years ago. At that time, there were NO clinical trials for NMO. There are now THREE being set in motion which is absolutely incredible! At Patient Day, we had the opportunity to hear from representatives from each of the three drug companies that are running the clinical trials. They did a great job explaining in layman’s terms how each of their trials worked. It was good to hear the facts and to be able to ask questions. Because NMO is so rare, NMO patients are being encouraged to participate in the clinical trials if we meet the eligibility criteria. This is our opportunity to actively help find the cure for NMO.  More information about these studies can be found here at NMOtion: http://nmotion.guthyjacksonfoundation.org/

Awhile back I wrote a short article about blogging about MS and NMO for MS Pathways, which is a UK MS organization publication. It was recently published and was a great opportunity to raise awareness for NMO, Someonelikeme.ca and NMODiaries.com . I’ve included a screen shot (above) of the e-publication. (I’m the one circled in red.) If you are interested in a hard copy, they can be ordered here: www.ms-uk.org

I have lots going on this month, which I’ll talk about in my next post. Blogging at the speed of life!

 

 

 

 

 

On A Mission

Written by on February 17th, 2015 – No Comments

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In late January, I flew out to Toronto to meet with the Personnel Awards  committee at the MS Society of Canada office. The Personnel Awards committee is responsible for reviewing research applications for studentships – Master’s, Doctoral and Postdoctoral fellowship applications that are involved in both biomedical research and clinical and population health research. This committee was comprised of 11 researchers and clinicians, (one of whom was the chair) two MS Society grants staff, an MS Society intern, the Vice President of Research, (who  herself has a PhD) and four community Reps, which included me. In all, the board room was filled to capacity with 19 people working as a team.

All of us spent 6 weeks prior to the meeting working hard on our reviews. I personally reviewed 24 grant applications. I spent countless hours learning new words (Thank goodness for Google!) and trying very hard to understand a few applications that were exceptionally challenging. There were times where I felt like I was stretching far beyond my comfort zone, but I would temper that with the knowledge that I was doing this work to the absolute best of my ability.

The review process was eye opening for me. I came away with a deeper understanding of just how complex a process it really is.

The Canadian MS Society’s mission statement reads:

“To be a leader in finding a cure for multiple sclerosis and enabling people affected by MS to enhance their quality of life.”

And these are the values* I saw in action during the review process: (more…)

Exciting News!

Written by on December 4th, 2014 – No Comments

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So…I have been keeping something very exciting under wraps for just over a month now, but I can finally tell you about it. In September, I applied to be a Community Representative for the Canadian MS Society and I received an email indicating that I’d been accepted as the representative for British Columbia at the end of October.

 A Community Representative is someone who is affected by MS-either they live with MS themselves or have a family member who does. In my case, I lived with an MS diagnosis for 5 years before being re-diagnosed with Neuromyelitis Optica (NMO). I have a number of close friends who have MS and I also have members of my family who live with or have lived with MS as well, so my ties to the MS community run deep.
Community Representative assess MS research grant applications to ensure ease of comprehension and relevance to MS and offer valuable insight throughout the review process to ensure that research dollars are spent wisely on projects that will have a significant impact on those affected by MS. Each Community Representative spends significant volunteer hours reviewing, evaluating and recommending studies for funding by the Canadian MS Society.
I have been assigned to the Personnel Awards Review Committee, which is responsible for reviewing Masters, Doctoral and fellowship applications that are involved in both biomedical research and clinical and population health research. This committee is made up of one chair person, ten scientific reviewers (Doctors) and four community representatives.
Over the next month, I will be working hard on the review process and then in mid-January, I will be flying out to Toronto for a meeting to go over in detail each application our committee has reviewed.

I am very honoured to have been selected to participate in this process and to have the opportunity to have an impact on the future of MS research in this way. I am really looking forward to working with my committee (I think it will be an excellent fit!) and am excited to learn new things.

The Canadian MS Society will be posting profiles of each of the Community Representatives on their website soon. If you’d like to learn more about the Canadian MS Society’s research program, you can do so by clicking here.