TAKING ACTION TO IMPROVE #LIFEWITHMS
Continue ReadingBy Benjamin Davis
As the dust settles on our annual Day on the Hill and carnation pinning ceremony on Parliament Hill, I’ve been reflecting on the importance of the nearly 80 meetings we had with parliamentarians and staff in our nation’s capital.Reprioritizing my life to save it
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Guest post by Kate Thompson, MS Bike ambassadorThat first year I was diagnosed with MS was hard — hard in so many ways. I had never struggled like I struggled then. Life was chaotic. I had a very supportive husband, whom I almost never saw. Our “quality time” was spent waiting in emergency rooms or for MRI appointments. I had three wonderful children — who were children — with temper tantrums, constant needs, and a poor understanding of what was happening to their mother. I had a career, which I had worked so long and hard to get. I could no longer do many of the things I used to do, like staying up until midnight to finish up work or to make cupcakes for school parties, and then get up at 6 a.m. the next morning to make lunches. Well I could, but my next day would be a mess.
Also, after my first relapse, my vision never fully returned, and I later learned it never would. What vision remained, worsened if I was tired. And then there was the dizziness. If I was tired, I was dizzy. If I moved too fast, was hot, upset or stressed, I was dizzy. I remember being at a work meeting one evening, talking to two experienced physicians and leaders in their fields, and walking through the conference hallways as we were talking. I couldn’t tell you what we were talking about — I was concentrating so hard on keeping my balance because my surroundings were spinning around me.
“Research and the foresight of my neurologist saved my quality of life!”
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Guest post by Darcie, MS Walk ambassadorI like to think that I’m one of the fortunate ones because my neurologist put me on my disease modifying therapy (DMT) right away for my MS without hesitation. Since I’ve been on it, I haven’t had any relapses – it’s been seven years now. His theory was why wait? He’d seen good results in other patients who have multiple sclerosis and took this DMT, and because I hadn’t been on another medication he thought it would be the best option for me – I like to think that my neurologist positively changed my life. I take a once a month transfusion, and although it has its documented side effects, I haven’t run into any issues and it’s drastically changed my quality of life. So now I can still do everything I enjoy doing, but I just have to make sure that I don’t get overtired. I still play volleyball for an hour and a half twice a week, and I’m still able to work full-time, which I’m thankful for.
MS research has improved my quality of life in terms of providing me with an available treatment for my MS. If it wasn’t for this DMT and the fact that my neurologist saw the potential for this drug to help me, I wouldn’t be where I am today. Both of my relapses before I went on this drug were quite severe, and I couldn’t imagine what my future would have looked like without it. But I do know that there’s no end all be all in terms of treatments, and that what works for one person might not work for the next. There’s also much more information about MS since I’ve been diagnosed.
(more…)Captain Jack: A Canadian MS champion
Continue ReadingBy 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…)
How to talk about MS after you’ve been diagnosed
Continue ReadingDiane’s story
Diane sits quietly in the neurologist’s office collecting her thoughts. She’s just received a diagnosis of multiple sclerosis. It didn’t come as a surprise; she recognized many of the warning signs and has known for a few years that something was off. Fatigue and heat sensitivity tipped her off, seeing double is what brought her to her doctor to seek answers.
Diane is conflicted by the relief she feels at her MS diagnosis. As she leaves the hospital, her relief turns to fear: “What do I do now?”
She runs through her next steps: learn more about this disease and decide whom to tell about her diagnosis. This was not going to be easy.
Diane’s experience is not unique. Nobody wants to feel alone at the time of their diagnosis. As well intentioned as people are, sometimes you just need someone who understands what you’re going through.
THREE’S A CROWD: MAINTAINING A RELATIONSHIP WITH MS
Continue ReadingJesse and Pat
Jesse and Pat met at work, the way so many adults do after they graduate. On their first date, Pat introduced Jesse to rock climbing. On their second, they saw Jesse’s favourite band and danced all night. And on their third date, they wandered city streets with a thermos full of coffee, laughing about how awkward it would be if their coworkers found out about their relationship.
Eight months later, Pat and Jesse moved into a beautiful two-bedroom apartment and got a cat.
That same year, Jesse started to feel burnt out. The couple agreed to be more active and eat more greens. They’d read an article that said green vegetables would boost their energy. Pat felt great, but Jesse started to feel even worse. He could no longer handle even the easiest rock climbing wall because his left arm kept going numb.
A few months later Jesse was diagnosed with MS.
Nutrition and MS: What we know about what you can do
Continue ReadingThe skinny on eating for MS
People living with multiple sclerosis can benefit from proper nutrition much like everyone else. No one diet directly improves MS, but there are ways you can adapt your diet to manage the many symptoms of this often complex disease.
MS presents itself differently in each person, and much like anything else relating to MS, it’s important that you work with your MS healthcare team to determine what works for your personal needs. You may want to include a nutritionist as part of your healthcare team for some advice on how to optimize your diet for those MS symptoms you are dealing with.
Sexual dysfunction: Managing a common symptom
Continue ReadingIntimacy and sexuality are important components of a healthy and contented life. Multiple sclerosis can affect sexual functions both directly and indirectly. In either case, can impact quality of life.
Single, ready to date, and living with MS: What you should know
Continue ReadingThe awkward first date is a trope so routinely played out in movies and on television that most of us feel like we’ve been on ten before ever experiencing one ourselves. Waiting to find out if you’re likeable enough for a second date is straight up terrifying. The other side of the coin is equally scary: the decision to let a stranger into your life. Dating can often seem like a balancing act as you simultaneously try to sniff out red flags while remaining open enough to give people the chance to pleasantly surprise you. (more…)
Abusive relationships: How to cope when you have a disability
Continue ReadingWhen I was first diagnosed with MS, I became very disabled very fast. I became completely dependent on my husband, which frustrated him. I allowed him to take his anger out on me because I felt so helpless and guilty. He would go into fits about how his life was ruined and became very depressed. He started taking medication, which made it better for a while, but then one day he went off the meds and told me that if he had to take a pill to live with me, then what was the point?
I would internalize all of his comments and think, ‘Look what I’ve done to him.’
I was lucky to have a social worker take notice of the situation. She helped me realize that this was not my fault, that my disability was not in my control and that if my husband couldn’t deal with it, that was on him, not me. She helped me find a better support base. You need to reach out to somebody — a friend, a family member or someone at the MS Society — just for that confirmation that it isn’t your fault. That’s the most important thing.
– Anonymous
As the dust settles on our annual Day on the Hill and carnation pinning ceremony on Parliament Hill, I’ve been reflecting on the importance of the nearly 80 meetings we had with parliamentarians and staff in our nation’s capital.
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