Thanks to the generous support of Biogen, the MS Society of Canada will be running a series of eight nationwide webinars beginning in the fall of 2016. We would like to hear your opinion on which topics are most important and interesting to you so that we can develop educational webinars that meet your needs.
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.
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.
The second simulation involved a volunteer putting on a pair of oven mitts and then I asked them to either button or unbutton or zip up their jacket and then to untie and tie their shoes. It took them longer than usual and helped give them an idea what it might be like to live with neuropathy (numbness) in their hands. They got a sense of how frustrating it could be to struggle with small motor skills.
For the final simulation I passed around a pair of safety glasses that I had coated with layers of white glue to blur the field of vision. This was to demonstrate what someone with optic neuritis might experience during an attack. I asked them to try and read something, which was of course, impossible. I always think it’s interesting to let someone try these experiments so that they can better understand the kinds of things people living with MS and NMO deal with on a daily basis.
Volunteers signing up. Photo credit: Taryn Lencoe
I was also able to share about the research the MS Society does, having just finished two terms as a Community Representative and to talk about the Interprofessional Health Mentors Program at UBC. At the end of my talk, I invited students to join us for our local MS Walks as either a participant or as a volunteer. Taryn ended up with a deluge of students wanting to volunteer at the walks, so that was fantastic! We’d brought lots of fliers, books and handouts about MS and NMO and by the end of the afternoon pretty much everything had been snapped up!
Organizers of OMS & Lelainia. Photo credit: Taryn Lencoe
It was a wonderful opportunity to inspire the future of health care and we had a really great time. This was my first event as an MS/NMO Ambassador and I am looking forward to future events to engage with the community. Next week, I am headed to Port Coquitlam’s council meeting to speak briefly and receive a proclamation for MS awareness month from the Mayor. In about 3 weeks, I will be speaking to UBC medical students about collaborative care at Vancouver General Hospital. I can’t wait!
I remember that day five years ago. My dad was with me. We were sitting in the waiting room at the neurologist’s office. The secretary didn’t look very friendly – you know, the kind of person who always looks as though you’re bothering her. There were hundreds of files in the cabinets behind her. All those sick people who needed a file here to get better. I remember feeling uncomfortable to be sitting there in that chair. I felt as if I was taking the place that belonged to someone who really needed to see the doctor. There was nothing wrong with me – no more symptoms at all. It was just fatigue, or maybe the side effects of my birth control pills. So when the neurologist invited me to come into his office, I went in alone. But he suggested that I go get my father from the waiting room.
Then the diagnosis: multiple sclerosis. To me, it sounded like a skin disease. Maybe that explained my problems with eczema. When I turned to my father, I could see that something was wrong, but I knew absolutely nothing about neurology and I had no clue. My father grabbed my hand and gave me a hug – a strong hug, full of love and pain. When the neurologist started to explain the disease to me, I tried to figure out what was so serious about it. I understood that people with the disease often end up in a wheelchair after a few years. OK, fine, I can live with that, but then what? Am I going to die? Am I going to become a vegetable? Am I going to be unable to remember the people I love? No, no and no. So I was still trying to work out what was so bad. The only thing I had in mind was a planned trip to Asia; I told myself that, as long as I could travel, everything would be fine.
So…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.
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…)
*The following post is one I wrote this past May when I decided to go public (thru the help of social media) about my (then) pending diagnosis of MS.
a·ware·ness əˈwernəs/ noun knowledge or perception of a situation or fact
So, here it goes…This Wednesday, May 27th is World MS Day. As a woman living with the reality of this disease, MS awareness is now something I realize I need to help be a part of. My diagnosis began nearly 2 years ago, and it has been the most terrifying, uplifting, isolating, exciting ride of my life. Each day I grow stronger, making the days when I do falter have less of a lasting impact. I am constantly learning everything I need to know about MS, and THAT is my power.
I have many people to thank for this opportunity who have encouraged me to share my story. One in particular, who is helping me express my journey through photos. If you, your family member, your spouse, your friend is undergoing a life-changing disease, talk about it. Educate yourself. Because no one should be left to fight on their own.
Pfizer, Rx&D and the MS Society of Canada are proud to offer a new transformational scholarship program for youth affected by multiple sclerosis. This innovative program is available solely due to the generous financial support of Pfizer and Rx&D
The John Helou Scholarship will award up to two exceptional Canadian youth with the financial support they need to overcome the financial obstacles that come with a personal or familial diagnosis of multiple sclerosis, enabling them to reach their full potential and become the next generation of MS leaders. (more…)
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.
During 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?
Multiple sclerosis has multiple meanings for many young people. Some live with a diagnosis of MS; some have a family member, friend or colleague with MS; some care for an individual living with MS; and some want to learn more about helping others with MS.
We are a group of young Canadians whose lives are touched by multiple sclerosis in one of these multiple ways. Together we have created this on-line community where you will hear from or connect with other young people—someone like you.
This is a community where you can share your story and have your voice heard in a safe, supportive and real environment.
Join us; be inspired, learn more, take action, become aware or get involved.
Check It Out
Wondering who came up with the idea for someonelikeme.ca? The MS Society Youth Advisory Group! This group of young adults living with or affected by MS want to make sure youth are supported and have their voice heard. Interested? Email firstname.lastname@example.org for more information.