To mark World MS Day, join us on Wednesday, May 27, 2015 from 7:30-8:30pm EST for our annual MS Research Town Hall. This by-phone and live-streamed event will feature prominent MS researchers, including Dr. Mark Freedman, Dr. Helen Genova and Dr. Ruth Ann Marrie, in conversation with the CBC Radio’s Bob McDonald (Quirks and Quarks).
The annual MS Research Town Hall offers listeners across Canada insights and information regarding the latest research being done in the area of multiple sclerosis and how it impacts the future of disease knowledge. Learn more about stem cells and MS and other ground breaking research that brings new hope to people with MS.
Watch our social media accounts to cast your ‘wild card topic’ vote. For more information and to pre-register for the event, visit mssociety.ca/msresearchtownhall.
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!
It’s that time of year again!!! Sunday is the big MS walk in Saskatoon and I’m very excited!!! I always love doing “CTV news clips” here in Saskatoon – wanted to share two that I’ve been a part of in the last couple of weeks to help promote the walk!!
GET WALKING EVERYONE! Thanks for all that you do!
Check out the 2 links below to watch the features on CTV News Saskatoon!
This one is from last week: http://bit.ly/1JcM7GZ
This one is from yesterday! (Start watching at 8 minutes): http://bit.ly/1DBRgQU
I encourage each of you to get involved in any way that you can, being an MS ambassador is amazing!
By coming together at the MS Walk and through your fundraising efforts, we make a tangible and life-changing difference to the 100,000 Canadians living with MS. This is an excellent opportunity to interact with members of the community while supporting a great cause! Go to mswalk.ca to register today or to sponsor a team!
Hello Someone Like Me! My name is Melissa. I’m 27 years old (newly might I add!), and I was diagnosed with Relapsing Remitting Multiple Sclerosis in late 2012, when I was 24. Before my diagnosis things were different for me, which I’m sure anyone with MS could say, really. I had recently graduated from the Toronto Film School, and was trying to get my foot in the door working in world of film production here in Toronto, something I really loved to do. After being diagnosed with MS though, things took a bit of a different turn and I ended up having to leave that behind. After just about a year of being diagnosed, and trying to learn to accept that, I decided it was time to find some new activities to keep me productive, and get excited about life again! I started trying new things that I hadn’t before. Even some things that I’d wanted to do for a long time but was a bit scared of, like taking singing lessons, travelling alone and even starting a blog of my own about it. It was around that time, I also started getting more involved with the MS Society, and joined the Youth Advisory Group (YAG). It felt like it was the right time for me to try and give back to the community that I had now found myself a part of. I didn’t really know what I could do to help, but after joining YAG I started to feel like maybe there was something I could bring to the table, something I could do to try and make some small difference in the world of MS, and maybe even involve some of the things I had learned in school! (more…)
I’d like to start my blog by saying this is just my story and I’m not advocating for anyone to do anything other than listen to yourself in making choices regarding your life and MS. I was diagnosed with MS in 2010 and have been on medications since a few months after diagnosis. I selected an injectable medication at the time based on lowest side effects, ease of use for travel with work to remote locations (expiration outside the fridge) and so forth. This medication was injected into deep fat layers under my skin. I wanted to live my life the best way possible with as minimal interference. Adjusting to the drugs was difficult – the huge itchy welts that didn’t go away etc but I was committed and after about 3-4 months of this I got through it and things became better. It took much out of me to deal with this and I won’t down play the difficulty. I felt, at the time, I was set for a long while despite the nurses forewarning “some people have injection site issues and cannot tolerate being on injectables in the long term and some people have no issues!” I never missed taking my medications and I depended on this as one of several things to manage my MS. After 2 years of being on my medication, I observed the dreaded injection site reactions – the lipoatrophy (death of fat layers) first in my arms and then finally in other injection locations despite vigilant rotation of injection site locations. I realized my time on these medications was slowly coming to a halt and this issue essentially eliminated a whole suite of other drug options (because they required injection into the same type of tissue).
Last year I set a timeline in which I would chart my next steps in moving forward. I gave myself a year to figure things out. I had to make difficult decisions and I wanted to be informed about what was next for me – at first it was mass learning about which drugs were available. I learned much about the oral medications coming on the market and of their side effects. The reality is all the drugs have side effects and all were harsher than the medications I was on. I spent several months feeling like my only option was to change drugs and I was set that this was my path forward. I was scared to make change –any change that might make me take a turn for the worst. To me no drugs was fear and thus not an option. (more…)
By: Chris Mann, guest blogger
Check out the videos below to see day 3 and 5 of my new MS treatment:
Back in the fall we were asking that everyone vote for someonelikeme.ca for the WEGO Health Activist awards. I am delighted to announce that someonelikeme.ca won for the category of Best Team Performance!
As described by WEGO Health: “This award is for teams who work better together. Whether it be a group that runs an online chat, a non-profit organization, or a caregiver and patient duo – this award is for a team that takes their activism to new heights because of the assistance from one another”. Visit the link to see the video announcing the winner: http://hubs.ly/y0CxY_0
Congratulations to our amazing team of bloggers who share their personal stories and experiences to make the site what it is, and provide support for those around them.
We would like to thank everyone for sharing and voting to help someonelikeme.ca become a finalist. Thank you for your ongoing support!
By: Chris Mann, guest blogger
Check out the videos below to see day 1 and day 2 of my new MS treatment:
By: Chris Mann, guest blogger
My name is Chris Mann. I’m 35 and live in Victoria, BC. I was diagnosed with RRMS in April of 2013 and had a very aggressive start to life with MS! Hence I am starting treatment with Lemtrada March 9th and have decided to video blog each day of my treatment. I hope others can learn from my experience as I’ve learned so much from others with MS. Check out my story below and stay tuned for more updates to come:
By: Andrea Mears, Guest Blogger
With the Mandarin MS Walk season quickly approaching, I wanted to share a little bit about my walk experience last year! My name is Andrea and I’m 24 years old. After being diagnosed with MS in December of 2013, I decided to create a team for the Mandarin MS Walk so my friends and family could come together to support the MS Society. Being diagnosed with MS has changed the way I value things in life, specifically my health and wellness. There are difficulties I face on a daily basis that may not be visible to others. Despite the negative impacts MS has on my life, it has taught me about personal strength and resilience the way no other experience has before.