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Guest post by Samara Bleiwas
I’m a mom, wife, business owner and a volunteer – things don’t just stop when you receive a diagnosis of multiple sclerosis. What’s most challenging for me is that I never fully gained my vision back – my right eye is at about 30 percent, and what I see is equivalent to watching a blurry black and white movie. Most people get their vision back within three months, but after almost two years, I’m resigned to the fact that my vision will remain the same. I’m just a little bit more cautious when crossing the street and driving. It’s amazing how I got used to limited vision, and my brain just adjusted to my new normal.
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Guest post by Lisa Mackintosh
The road to my diagnosis started when I saw my family doctor in October of 2014 because I was having issues with numbness and balance, which I originally thought was undiagnosed vertigo. It turns out I was in denial and had been experiencing a variety of symptoms for a while. When I ended up with numbness in my right arm, I was sent to get a cat scan right away. My doctor showed me areas of fuzziness on my brain and referred me to an urgent neurology clinic. Once at his office, the neurologist spent nearly an hour asking me questions like had I ever felt this, experienced that, or does this ever happen when I do so and so, and so on. Every one of my answers that followed his questions started out with “Yes… but.” The neurologist really made me think about when the initial signs of my MS started, and mentioned that he thought I might have had multiple sclerosis since my early 20s – when I had a case of optic neuritis – which makes sense now. If anything, I guess I had 20 some years of ignorant bliss! My third MRI, in 2015 confirmed it – I had MS, and now I have an explanation of why my body acts the way it does without warning.
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Guest post by Kim Cormack
I used to love running – I’d run ten laps of Bob Daily stadium almost daily. Now, writing is my new form of running – I’ve been writing a paranormal fantasy series since 2009 and it’s become my saving grace. Some things I’d still love to be able to do is stand at my son’s high school graduation and my daughter’s graduation from University. Someday I’d love to be able to dance at their weddings. I’d love to travel with them, maybe go to Disneyland with my son or Rome with my daughter. I’m not sure how well I’d do with my MS walking in the heat… but I’d try.
Years ago, I would lose track of time due to my MS. Hours would pass, and they’d be gone, but I was still just – there. I couldn’t understand what was happening. I’d read about it, but I wasn’t capable of putting two and two together at the time. I couldn’t even remember where I was supposed to put a comma in a sentence. I was incredibly lucky to have support, but at the time nobody really knew what was happening either. You feel like you’re losing your mind. You walk in a room and have no idea why you’re there. I once went to the wrong town to visit someone… true story. It’s humiliating because it’s almost impossible to explain this to someone that hasn’t gone through incapacitating brain fog. In time, I gained some of my memories back and was able to learn back the things I’d lost through repetition, but in the back of your mind, you always know there’s a chance you’ll lose it again.
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Caregivers are the backbone of our health care system and home care programs. They contribute an estimated $25 Billion of unpaid care annually.
Canada has the highest rate of multiple sclerosis in the world and caregivers make it possible for Canadians living with MS to stay in their homes while receiving the care they need, an important consideration in assessing quality of life, especially given the lack of available age-appropriate long term care. (more…)
“This announcement marks an important milestone in MS research, and possible treatment options for people like me — living with progressive MS.”Continue Reading
Guest post by Cory Turner
We don’t get to pick when we’re diagnosed with multiple sclerosis, and like many others who’ve received the news, the timing for me wasn’t ideal. Having just moved to San Francisco a couple of years prior, my life was just finding its footing. My career was moving in the right direction – my wife was six months pregnant with our first child, and plans for a new home were on the horizon – life was good. It’s when double vision, and the associated unbalance invaded my world, made it clear that life for me and my family would begin to change. Agility and strength were now being replaced with fatigue and disruption, and my energy needed to be invested wisely. In 2005, feeling that something was off, my wife convinced me to go to the hospital where an ER doctor ordered a CT scan that quickly revealed spots on my brain. It was a fast diagnosis of relapsing-remitting MS that followed, which would develop into progressive MS as time passed. Surrounded by a flood of concern, this would represent the first of many forks in the road.
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By Chantal Milne
When I found out I was pregnant, I eagerly downloaded two pregnancy apps, bought three books on the subject and made it my morning ritual to get up and google, “Day X of pregnancy.”
The amount of information available to us these days is vast to the point of being overwhelming sometimes. When it came to the progress of my growing baby, I wanted to know everything. Every. Last. Detail. I’ve always been a curious person, and at a certain point, I started thinking about how stark a contrast the progression of my pregnancy was in relation to my MS progression. There are no apps to tell me how I’ll be feeling next month with MS, that’s for sure. There are the obvious differences, like getting to meet your wonderful new baby versus finding out you have an annoying scary disease, but this idea of progression and how we know so much about pregnancy, and so little about MS, it keeps me up at night sometimes – I need to know more.
MS is a journey I wouldn’t wish upon anyone. Receiving the diagnosis can feel like an uphill battle, once you know, then what? I have a great health care team, but not one of them can tell me with certainty how my disease will progress, or whether or not I’ll be able to walk into the room and present a candle-lit birthday cake to my daughter on her fourth birthday. I’m optimistic and I’ve got my disease under control, I think. There are just too many unanswered questions when it comes to MS disease progression.
I’ve found ways to deal with the anxiety of not knowing how my MS will impact me in the future, but I look at my daughter and I wonder how will I answer the questions she has? What if we knew what causes MS? What if someone could tell me how to stop my MS from progressing? What if someone could tell me if I would be walking in five years? Would that change how I live my life now?
When it comes to MS, for me, not knowing is half the battle. That’s why I’m so excited about the MS progression study results. I can’t prevent the onset of MS in my life, it’s too late for that, but what if in 10 years we can stop it from progressing? What if we knew why my MS is different from the guy down the street? What if we could stop relapsing remitting MS from turning into secondary progressive MS, or better yet, end MS altogether!
I am hopeful, I am confident and I know that we can do this. We’ve got the world’s best MS clinicians and researchers working to answer these questions. By the time my daughter is old enough to ask me what MS is, maybe – just maybe – there will be an answer. That’s where I want my MS journey to go, and the MS progression study is giving me a road map to get there.
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By Judith Kays
In 1976, Jack MacDuff led his curling team from St. John’s, Newfoundland to number one at the Brier – Canadian curling’s highest honour. At only 26 years old, Jack was on top of the world.
A couple of years ago, Jack spoke at a sports awards dinner for youth. He stressed the importance of staying in the game:
“Keep your head on straight and keep going – lean on your teammates and your coaches and you will be the best you can be.”
The best that Jack is everyday reveals a strong-willed, thankful and witty man, who just happens to live with primary progressive multiple sclerosis. (more…)
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Women in Canada are three times more likely to develop MS than men. Women also face significant barriers to finding reliable information about their health; accessing quality medical services; and being prescribed treatment options appropriate to their specific circumstances. Additionally, when taking the Canadian workforce into account, women’s average incomes and earnings are lower making them more susceptible to poverty, which intensifies the barriers and hardship caused by MS.
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People in Canada are most commonly diagnosed with MS between the ages of 15-40, but did you know that it can affect children as young as 2 years old?
Lynn MacMillan has been working as a pediatric MS nurse at the Sick Kids Hospital in Toronto since its inception in 1999. We sat down with her to discuss her role in the lives of children living with MS.
By Lynn MacMillan
Because MS is unpredictable and episodic in nature, we manage concerns over the phone and by e-mail quite a bit. We do a lot of education on the disease itself: what is MS, how to recognize relapses, how to deal with symptoms that run the gamut from being very mild to completely life altering. We talk a lot about the importance of being adherent with medication and what that means when choosing a disease modifying therapy. We like to remind parents that their child has MS but it does not entirely define them – they are a kid first and foremost who happen to be living with MS. We try very hard to keep kids out of the hospital, out of emergency, and encourage leading a regular life. We meet with the families whenever they need to, basically.
My friend and colleague, Jennifer Boyd, Clinical Nurse Specialist and I are both certified Neuroscience and Multiple Sclerosis Nurses. We have worked in the Pediatric MS Clinic at SickKids since its inception in 1999. We are lucky to have recently recruited Joley Johnstone, Nurse Practitioner to our team. Dr. Ann Yeh is the director.
Almost all of the children we see present to their family doctor or pediatrician first, with concerning symptoms. A referral is made to our clinic, we meet the patient and family, a consult is done and investigations begin and the diagnosis is made over time.
Kids are resilient, parents are often much more upset about the diagnosis than the kids themselves. I think that the approach of the disclosure and the support we provide make understanding and accepting the diagnosis a little better.
Ongoing research has resulted in several new disease modifying therapies that are available for our young patients. These therapies may involve daily injections/ pills or less frequent infusions.
For the most part children with MS are quite well and stable, happily. There are some kids that really have a rough go of it but within any population, you’re going to have people on either end of the spectrum.
When our kids graduate out of our clinic to adult care; it’s very emotional, we’ve been through a lot with these kids and their families.
I always think of one young boy, diagnosed at six years of age who had a very rocky course – he ended up losing his vision. He was one of the original campers at MS Summer Camp and he never missed a year until he graduated at 21. Just seeing him through so many things, becoming a man, getting his service dog – everyone at Camp loved him and his dog, Agent, graduating from Elementary School and High School, playing goalie for his hockey team, cliff jumping to name a few. His story is a feel good story for me. I don’t know where life will take him, but I’ll always have a soft spot in my heart for him.
Well, I have a soft spot for them all. I have so many great stories.
I keep in touch with many of the kids who have come to MS Summer Camp. The campers are a family, they refer to themselves as “my MS family” and it’s just a wonderful thing for them. They’re very, very supportive of one another.
Having experienced MS nurses at camp is comforting for families, especially for younger campers who may be reticent to come.
The first year of MS Camp in 2005, was fantastic – I believe back then it was only for three nights. Once the kids got there and met each other, they absolutely loved it and the feedback ended up being that they wanted camp to be longer! So every year since then it has been a whole week long. It just gets better and better every year. Barb, the director of Camp Merrywood, is amazing and has so much experience. She employs exemplary counsellors who are very well trained and full of life. She always gives the campers plenty of hang time so they can chill and rest.
The nice thing about camp is that they all have MS, they all know what each other is going through. MS Camp offers a wonderful place for them to have FUN on their terms.
I’ve been a nurse now for 42 years. I’ve worked with neonates, children, adolescents and teens for 40 of those years. I love children, I love their energy and their humour, their kookiness, their vulnerability, honesty and trust. We have a hoot with the kids. Kids are so insightful.
Working with children who are impacted by a chronic illness, I have learned, above all else, how resilient they are, for sure, and also their strength and bravery.
MS Family Camp takes place at Easter Seals Camp Merrywood in Perth, Ontario from August 25-31, 2017. For more information visit www.mssociety.ca/camp or contact Jackie Mahoney, Camp Coordinator via email at firstname.lastname@example.org or toll free at 1-800-688-6252 ex 325.
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Kiss Goodbye to MS is the first and only global fundraising and awareness campaign for multiple sclerosis.
We talk a lot of talk around here about MS being Canada’s disease. While it’s true that we have the highest rate of MS in the world, and some of the best researchers around, it’s important to remember that we are part of a global community. MS reaches beyond borders, so we’re going to do the same. Now through February 14, we’re calling on all Canadians to join the rest of the world in a show of solidarity, to Kiss Goodbye to MS.
So how can you help? It’s simple really: