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.
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…)
By: Andrea, guest blogger
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?
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
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: firstname.lastname@example.org
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)
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…)
It’s important to vote because it’s important to have your voice heard.
It’s ESSENTIAL to have your voice heard.
As 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 ideas 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.
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.
“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