Hello again SLM Community! I am so sorry to have seemingly been absent so long. I promise you guys that you weren’t far from my thoughts. Time seems to have gotten way from me; nonetheless, I have returned! In doing so, I am finally sharing an article I had been somewhat hesitant to let go of as it is about someone who was so very, very dear to me.
As most of you are well aware, I am a woman with an amazing support network. I have a large group of family and friends who have helped me throughout my life and my MS journey. I am blessed to come from a large family with many grandparents, aunt and uncles and other relatives. I was fortunate to have a team of people that always had my back and I could go to for anything. I’ve been lucky to share close relationships with my grandparents; something I am well aware of that not everyone gets. It is through that blessing that I have experienced some of the ultimate highs in this life and some heart shattering lows. I am going to split this post into two (please click here for part 2) as this story encompasses more words than just one post can convey. So please bear with the split and know this story comes from some treasured parts of my life!
Please note: This post is part 2, to read part 1 please click here
I had been through the death of a loved one before. It was certainly not my first grandparent related death; it was just different. I felt the pain more acutely than before and there was a gaping void left in my heart. That sounds so cliché but there must be a reason there is such a cliché, right? I was so very numb and broken during that first day without him. I still had my MS infusion scheduled and I knew I couldn’t put that off because my grandfather wouldn’t have wanted it. So we drove the two hours to the private clinic. I sat the required two hours for treatment with sunglasses on so the tears I shed were private and I had some protection from the reality that I was facing. A reality that meant one of my closest allies in this world was no long here. The truth of that day was far too much for me to bear. After completing treatment and returning to my home, my body decided things were too much for it and it shut down. I lost consciousness, my breathing slowed to an almost imperceptible level, and my heart rate dropped. I still feel bad about my parents having to deal with that on top of everything else.
Dear someonelikeme community,
I was lucky enough to volunteer for a commercial that is connected to a very important campaign. After research and some reflection I decided to write a blurb that I hope you will share with your social media support networks. I am really inspired by the work the MS Society is doing and I feel like as young MSers it is important to help spread awareness. I hope you feel the same. Please share this post if you have the time. I thank you in advance.
If you saw a movie over the long weekend or happen to still have cable you may have seen this commercial…
Now let me tell you why this ad means more to me than turning 25 this weekend. I have now lived for 25 short years and in that time I have experienced 8 long years of life with MS and NEVER BEFORE have I seen a commercial for MS – at least not like this.
In 2009, the National MS Society described the history of MS as “a detective story spanning more than a century” and can trace what we know as MS in autopsies that date as far back as 1838. For us Canucks in 2015 we know provinces have reported various incidence rates, which are the number of new cases of MS per capita in a given year. These rates rival some of the highest incidence rates seen around the world, and researchers are trying to determine if the high number of diagnoses are due to a factor that is unique to Canada or if it’s a reflection of changes to our diagnostic technology. The two things to take away from this are:
a) MS has been around and has been a mystery for awhile
b) For as much as they know about the disease there is still so much more they need to discover (more…)
In late January, I flew out to Toronto to meet with the Personnel Awards committee at the MS Society of Canada office. The Personnel Awards committee is responsible for reviewing research applications for studentships – Master’s, Doctoral and Postdoctoral fellowship applications that are involved in both biomedical research and clinical and population health research. This committee was comprised of 11 researchers and clinicians, (one of whom was the chair) two MS Society grants staff, an MS Society intern, the Vice President of Research, (who herself has a PhD) and four community Reps, which included me. In all, the board room was filled to capacity with 19 people working as a team.
All of us spent 6 weeks prior to the meeting working hard on our reviews. I personally reviewed 24 grant applications. I spent countless hours learning new words (Thank goodness for Google!) and trying very hard to understand a few applications that were exceptionally challenging. There were times where I felt like I was stretching far beyond my comfort zone, but I would temper that with the knowledge that I was doing this work to the absolute best of my ability.
The review process was eye opening for me. I came away with a deeper understanding of just how complex a process it really is.
The Canadian MS Society’s mission statement reads:
“To be a leader in finding a cure for multiple sclerosis and enabling people affected by MS to enhance their quality of life.”
And these are the values* I saw in action during the review process: (more…)
Sooooo it’s been a LOOOOOOONG while since I have felt inspired to blog. I won’t lie. I could give excuses but I guess the real reason is I haven’t made time for it. I am more of a chatter box and I have yet to hire a scribe. Today however is a day I felt warranted some conversation. Currently I am 24 years old and my 25th birthday is in only two days yet today always seems way bigger than my birthday. This is because 8 years ago today (at around 11:00am) I was diagnosed with RRMS.
I can remember it was bright outside but cloudy, I was wearing my favourite family guy pyjamas, drinking a mocha Frappuccino from Starbucks, and pumped full of the worst steroid ever: Prendizone. It had been about a week since I had been transported to Sick Kids from a different hospital because there wasn’t a paediatric Neurologist in our town, and 6 months since my symptoms had started. It was also two days before my 17th birthday. (more…)
KRG Children’s Charitable Foundation and the MS Society are proud to announce a transformational new scholarship program for youth affected by multiple sclerosis.
The Follow the Leader Scholarship Program will award four exceptional youth from the Greater Toronto Area 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 attain the education they need to reach their full potential and become the next generation of MS leaders.
The recipients must be enrolled in a science, technology, engineering or math undergraduate program and will receive up to $25,000/year for four years to apply to tuition and living expenses.
To learn more about the Follow the Leader Scholarship Program, eligibility requirements and to apply, visit: https://juno.aucc.ca/app/followtheleader.html
The MS Society and Someone Like Me would like to congratulate Kayla McLaughlin on receiving the Prime Minister’s Volunteer Award for Emerging Leader! This prestigious national award is for new volunteers whose volunteer contributions made or are making a positive difference in their communities.
In 2007 Kayla was diagnosed with multiple sclerosis (MS) at the relatively young age of 18. Since then she has taken on the disease, for both herself and the other 3500 Saskatchewan residents living with MS. Kayla has been an active and vibrant volunteer in the MS community. (more…)
This is NOT meant to start a debate, as this is merely how I feel after doing all the research I have done … I have made choices FOR ME … for no one else.
I often find that the best doctors or health practitioners are those who don’t know a thing … there are many decisions I make in my life that are the best for me. I’m not saying you have to agree with ANY decision I make or write about, and that’s OK! But I don’t appreciate feeling attacked for my own opinion.
My husband and I have made the decision to NOT get the flu shot, I’m sure some of you support that and some of you don’t – that’s ok! But do I feel the need to verbally attack people who choose the flu shot? NO! So why is it ok to verbally attack me because I chose to not get the flu shot. (more…)
For the second year, I’ve decided to participate in the #OneWord365 Challenge instead of making a New Year’s Resolution. This word is going to be used to guide my actions in the year, and allow me to have somewhat of a focus on what I do in my life. 2015’s word is “Explore”.
This blogpost is going to be focusing on how I’m going to be exploring different approaches to health. I’ve written before about my struggle with health, weight and physical activity.
The reason I’m heading in to 2015 with a health focus is that I ended 2015 with a bit of a health scare. After two years of being on one treatment for my MS, my neurologist suggested I switch to a different one, because although I was clinically okay, the little bugger known as MS decided to keep developing inside my body. So this new treatment was supposed to help with that. (more…)
So…I have been keeping something very exciting under wraps for just over a month now, but I can finally tell you about it. In September, I applied to be a Community Representative for the Canadian MS Society and I received an email indicating that I’d been accepted as the representative for British Columbia at the end of October.
A Community Representative is someone who is affected by MS-either they live with MS themselves or have a family member who does. In my case, I lived with an MS diagnosis for 5 years before being re-diagnosed with Neuromyelitis Optica (NMO). I have a number of close friends who have MS and I also have members of my family who live with or have lived with MS as well, so my ties to the MS community run deep.
Community Representative assess MS research grant applications to ensure ease of comprehension and relevance to MS and offer valuable insight throughout the review process to ensure that research dollars are spent wisely on projects that will have a significant impact on those affected by MS. Each Community Representative spends significant volunteer hours reviewing, evaluating and recommending studies for funding by the Canadian MS Society.
I have been assigned to the Personnel Awards Review Committee, which is responsible for reviewing Masters, Doctoral and fellowship applications that are involved in both biomedical research and clinical and population health research. This committee is made up of one chair person, ten scientific reviewers (Doctors) and four community representatives.
Over the next month, I will be working hard on the review process and then in mid-January, I will be flying out to Toronto for a meeting to go over in detail each application our committee has reviewed.
I am very honoured to have been selected to participate in this process and to have the opportunity to have an impact on the future of MS research in this way. I am really looking forward to working with my committee (I think it will be an excellent fit!) and am excited to learn new things.
The Canadian MS Society will be posting profiles of each of the Community Representatives on their website soon. If you’d like to learn more about the Canadian MS Society’s research program, you can do so by clicking here.