I was diagnosed with RRMS 3 years ago at the age of 31. I had been experiencing numbness on the left side of my body for months and MRIs showed lesions everywhere. I remember feeling relieved for a brief moment because it wasn’t a brain tumor. My relief quickly faded after I asked the Neurologist if I should continue to try to have a baby. (My husband and I had been trying to conceive with no luck for several months). What he told me broke my heart. He believed it was important to start treatment right away but the medication was not safe for pregnant women. Also, many women experience a relapse postpartum and a relapse could affect my ability to look after my baby. I had a tough decision to make.
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.
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.
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.
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.
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.
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
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.