someonelikeme.caSomeone Like Me - An online community for youth affected by MS.

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Title:Someone Like Me - An online community for youth affected by MS.

Description:Someone Like Me - An online community for youth affected by MS. Someone Like Me An online community for youth affected by MS. MS Society of Canada Search for: Fran?ais Blog About History Who We Are Pr

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Someone Like Me - An online community for youth affected by MS. Someone Like Me An online community for youth affected by MS. MS Society of Canada Search for: Fran?ais Blog About History Who We Are Principles Our Bloggers Aaron Amanda Ashley Martin aurora721 Domesticated Firm Believer Footsteps Himani kirstimarie Lelainia LionCoeur Loribelle Maria Mike neenuh_bee Smiles Spicy Trina Verlyn Partners Contact Us Tools What is MS? Who Gets MS? What Causes MS? How Does MS Work? What are the Symptoms of MS? Physical Aspects Living a Healthy Lifestyle Medications, Therapies, and MS Coping with Fatigue Pain Management Cognitive Changes Bladder Problems Emotional Aspects Coping with an MS Diagnosis What Do I Tell People about Having MS? Dynamics with Family and Friends MS and Depression Intimacy, Sexuality and MS Forums Get Involved Videos Follow: RSS Feed Twitter Facebook YouTube Flickr Operation Med School 2016 Written by Lelainia on May 31st, 2016 – No Comments 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! Share this: Click to share on Facebook (Opens in new window) Click to share on Twitter (Opens in new window) Click to share on Google+ (Opens in new window) Click to email this to a friend (Opens in new window) No Comments Living in the Winnipeg Area? Join us! Written by Emily on April 27th, 2016 – 1 Comment Share this: Click to share on Facebook (Opens in new window) Click to share on Twitter (Opens in new window) Click to share on Google+ (Opens in new window) Click to email this to a friend (Opens in new window) 1 Comment Personal Story Written by Guest Blogger on April 22nd, 2016 – 1 Comment GUEST BLOGGER: PASCALE LAVALLéE 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. (more…) Share this: Click to share on Facebook (Opens in new window) Click to share on Twitter (Opens in new window) Click to share on Google+ (Opens in new window) Click to email this to a friend (Opens in new window) 1 Comment Fresh Ink! Written by Lelainia on March 3rd, 2016 – No Comments 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. (more…) Share this: Click to share on Facebook (Opens in new window) Click to share on Twitter (Opens in new window) Click to share on Google+ (Opens in new window) Click to email this to a friend (Opens in new window) No Comments Trip to Toronto! Written by Lelainia on February 2nd, 2016 – No Comments 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…) Share this: Click to share on Facebook (Opens in new window) Click to share on Twitter (Opens in new window) Click to share on Google+ (Opens in new window) Click to email this to a friend (Opens in new window) No Comments Awareness Written by aurora721 on January 26th, 2016 – 1 Comment *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 ??wern?s/ 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. Share this: Click to share on Facebook (Opens in new window) Click to share on Twitter (Opens in new window) Click to share on Google+ (Opens in new window) Click to email this to a friend (Opens in new window) 1 Comment Announcing the new John Helou Scholarship for youth affected by MS! Written by Emily on January 21st, 2016 – No Comments 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…) Share this: Click to share on Facebook (Opens in new window) Click to share on Twitter (Opens in new window) Click to share on Google+ (Opens in new window) Click to email this to a friend (Opens in new window) No Comments Conversation Written by aurora721 on January 13th, 2016 – 2 Comments By: Andrea, guest blogger con·ver·sa·tion k?nv?r?sāSH(?)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? Share this: Click to share on Facebook (Opens in new window) Click to share on Twitter (Opens in new window) Click to share on Google+ (Opens in new window) Click to email this to a friend (Opens in new window) 2 Comments 4th Annual UBC NMO Patient Information Day Written by Lelainia 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 Share this: Click to share on Facebook (Opens in new window) Click to share on Twitter (Opens in new window) Click to share on Google+ (Opens in new window) Click to email this to a friend (Opens in new window) No Comments Fast Forward Your MS Knowledge Written by Emily 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 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) Share this: Click to share on Facebook (Opens in new window) Click to share on Twitter (Opens in new window) Click to share on Google+ (Opens in new window) Click to email this to a friend (Opens in new window) No Comments ? Older Entries Watch the #MSMyStory Youth Videos Hear From MS Youth Advisory Group 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 andria.samis@mssociety.ca for more information. Recent Posts Operation Med School 2016 Living in the Winnipeg Area? Join us! Personal Story Fresh Ink! Trip to Toronto! Active Forum Topics Newly Diagnosed My bestfriend. Smoking Tysabri Anyone? Lashing out medical MJ Archives May 2016 April 2016 March 2016 February 2016 January 2016 November 2015 October 2015 September 2015 August 2015 July 2015 June 2015 May 2015 April 2015 March 2015 February 2015 January 2015 December 2014 November 2014 October 2014 September 2014 August 2014 July 2014 June 2014 May 2014 April 2014 March 2014 February 2014 January 2014 December 2013 November 2013 October 2013 September 2013 August 2013 July 2013 June 2013 May 2013 April 2013 March 2013 February 2013 January 2013 December 2012 November 2012 October 2012 September 2012 August 2012 July 2012 June 2012 May 2012 April 2012 January 2012 December 2011 November 2011 Links MS Society of Canada MS Answers National Multiple Sclerosis Society F.U.MS Online Store The Experience Project Blog Privacy Statement Comment Policy Terms of Use Contact Us ? 2016 MS Society of Canada. Send to Email Address Your Name Your Email Address Cancel Post was not sent - check your email addresses! 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Domain name: someonelikeme.ca Domain status: registered Creation date: 2009/07/10 Expiry date: 2016/07/10 Updated date: 2016/05/17 DNSSEC: Unsigned Registrar: Name: Rebel.ca Corp. Number: 45 Registrant: Name: Multiple Sclerosis Society of Canada (NFP) Administrative contact: Name: Brenda Leblanc Postal address: 175 Bloor St E Suite 700 North Tower Toronto ON M6E1T8 Canada Phone: +1.(416) 922-6065 x2804 Fax: Email: brenda.leblancⓜmssociety.ca Technical contact: Name: Paul Athaide Postal address: 700-175 Bloor Street East Toronto ON M4W 3R8 Canada Phone: 416-967-3048 Fax: 416-922-7538 Email: paul.athaideⓜmssociety.ca Name servers: ns1.linode.com ns2.linode.com ns3.linode.com ns4.linode.com ns5.linode.com % WHOIS look-up made at 2016-05-27 20:00:36 (GMT) % % Use of CIRA's WHOIS service is governed by the Terms of Use in its Legal % Notice, available at http://www.cira.ca/legal-notice/?lang=en % % (c) 2016 Canadian Internet Registration Authority, (http://www.cira.ca/)