Symptoms of the MS include extreme fatigue, lack of coordination, weakness, tingling, impaired sensation, vision problems, bladder problems, cognitive impairment and mood changes. \u00a0\u00a0Sadly, there is no cure, but research is getting closer to finding one every day.\u00a0 MS is three times as likely to impact women as men. It usually strikes people between the ages of 20-49, in the prime of their life.\u00a0 To learn more about the disease, and what we can do to help, we turned to Pamela Valentine, the President and CEO of the Multiple Sclerosis Society of Canada.\u00a0 Pamela is a trained neuroscientist, published researcher and has been awarded Hotchkiss Brain Institute Alumni of the Year, Canadian Psychological Association of Excellence, and the Neuroscience Canada Foundation Award.<\/p>\n
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Canada has the highest rate of MS in the world, yet we hear so little about the disease. It\u2019s still a mystery to many.\u00a0 Why do you think that we have the highest rate and why is there still so little known about the disease?<\/h3>\n
We really don\u2019t know, but I often use the analogy of a perfect storm.\u00a0 MS is a complicated disease in which there are a multitude of factors that can result in the expression of the disease; some of which may be genetic, others may be environmental and when they come together in that perfect storm, you have MS.\u00a0 We know some of those factors, but we don\u2019t know all of them.\u00a0 Some of those factors happen to be high in Canada and other countries and a number of environmental factors play into that.\u00a0 We try on a daily basis to let people know, because we consider this to be Canada\u2019s disease in a way because the numbers are so high.<\/p>\n
I often think that people don\u2019t know that somebody has MS because they may seem fine at times.\u00a0 They might not fit the visual image of what MS can look like.\u00a0 It\u2019s invisible at times.\u00a0 There are two forms of the disease, relapsing remitting which can be episodic in nature so somebody may be fine one day and not be able to get out of bed the next day.\u00a0 Then, there are progressive forms where somebody progressively experiences levels of disability over the course of the disease.\u00a0 For some people, that progression can happen quite quickly, and for other people very slowly. It\u2019s very individual.<\/p>\n
How can we be better allies to people with MS both as peers and potentially as employers?<\/h3>\n
Be open and understanding of those that have the disease. \u00a0There has to be a real recognition of the unpredictability.\u00a0 I think about the reality of us all living with the unpredictability of COVID-19 right now.\u00a0 That\u2019s what somebody who has MS lives with all the time.\u00a0 We have been advocating strongly at the federal level for extending EI benefits from 15 to 26 weeks. There has to be a recognition that this is episodic for many people.\u00a0 For employers, peers and family members, just having that understanding that somebody may go for years and be fine and then have an episode is important.\u00a0 We now have a better understanding of what the unpredictability of a disease feels like.<\/p>\n
I think that there is a bit of stigma with people not wanting to talk about MS because they aren\u2019t feeling unwell all the time. People may not want to let their employers know if they are feeling relatively well. That\u2019s why we are so happy when somebody that has visibility like soccer star, Christine Sinclair has a willingness to talk about it. \u00a0Those stories and voices are so important in getting beyond the stigma.<\/p>\n
You have been an outspoken advocate for “episodic disabilities”, including MS.\u00a0 How has the new reality benefited or hurt people with conditions like MS?<\/h3>\n
I hope that as a society that we are gaining an understanding that would allow for it to be better for the person who is living with MS.\u00a0 That as employers or members of a community that we have a much greater understanding of what it means to be that vulnerable.\u00a0 For the person that is living with MS, it\u2019s added a level of uncertainty.\u00a0 We don\u2019t know what getting COVID-19 is going to mean for the person with MS.\u00a0 We don\u2019t understand what it means if they are on particular disease modifying therapies and how that will play out.<\/p>\n
People living with MS already, generally speaking, often have challenges with their financial situations because of not being able to work.\u00a0 This adds to that stress for sure.\u00a0 I think that there has been a real challenge for people in terms of accessing the normal support structures that they would usually have under no COVID, whether that\u2019s access to their neurologist, physiotherapist, massage therapist or whoever they see to manage the symptoms of the disease.<\/p>\n
People living with MS are more at risk for mental health issues than the general population and then you add the stressor of COVID-19.\u00a0 From the folks that I talk to regularly who are living with MS, that\u2019s a big concern for them.\u00a0 They are probably going to be living with constraints due to COVID-19 for a longer period of time than some of us who may be able to get back to work sooner because we are less at risk.\u00a0 I hope that one of the positive outcomes that we have is that as a society, we have a better understanding of what it might mean to be living vulnerably.<\/p>\n
The MS Society provides advocacy support, but people with MS will have to advocate for themselves from time to time.\u00a0 Patients often fear or lack the confidence to question doctors.\u00a0 What advice do you have for patients with MS when it comes to advocating for their own health?<\/h3>\n
One of the jobs that we see as being important to us is providing topical, fast, quality information for people.\u00a0 Having an understanding of what evidence is there and what evidence is lacking is really important for the dialogue that people are having with their health care providers.\u00a0 It\u2019s also important to have someone in your corner.\u00a0 We have peer support programs in place so that somebody that is at a particular point in their disease has the ability to phone somebody else and talk to them about what it means.\u00a0 Having a family member or a friend being able to be in some of those conversations and providing you with support as you make decisions is crucial. It is a complicated disease and there are complicated decisions that you have to make as a patient.<\/p>\n
We want to make sure that people have good evidence at their fingertips, that they have the information that they need and that they have the proper support to talk through that.\u00a0 We run a knowledge network which is a phone service that anyone across the country can access if they have a question and want to get some information.\u00a0 We provide as much support as we can in enabling people to have those conversations with care providers and make decisions that are right for them.\u00a0 What is right for one person won\u2019t necessarily be right for the other.\u00a0 You need to think about the individualized path that somebody chooses in how they are going to manage their disease.\u00a0 Some people are able to manage it with nutrition, exercise and a more natural approach and for other people, it means a disease modifying therapy. We want to encourage the right decisions and the right path for those people.<\/p>\n
Can you talk a little bit about the holistic approach of using nutrition and exercise<\/a> if you have MS?<\/h3>\nThere is a breadth of information and the jury is still out on diet.\u00a0 There are certainly a number of dietary approaches and I wouldn\u2019t want to recommend one over the other without the individual with MS having a conversation with their care provider.\u00a0 There is a host of nutrition approaches that people have anecdotally described as being successful.\u00a0 I think that people need to follow their own path on what works for them.<\/p>\n
Twenty years ago, what a neurologist would have told somebody with MS about exercise is go home and don\u2019t do anything.\u00a0 Today, we know that exercise has great benefits.\u00a0 What works as an exercise regime for one person might be different than what works for another, but we generally know that exercise is beneficial.\u00a0 It keeps you moving, keeps your cardiovascular system healthier and that generally, it has long term impact on the trajectory of the disease.\u00a0 We know that people use physiotherapy or physiotherapy guided movements to help keep themselves mobile.<\/p>\n
We also know that there is a huge feeling of isolation for the person living with MS. Having peer support impacts mental health as do mental health approaches like a therapist.\u00a0 The individual has to pick and choose what works for them, whether it\u2019s being part of a group or just a peer that they can call once a month.\u00a0 There is a breadth of solutions that people can access to help them figure out what works for them.\u00a0 But we know today that diet, exercise and keeping yourself mentally healthy have an outcome on your disease.<\/p>\n
People need hope when they are fighting against a disease.\u00a0 What are the good news stories about new treatments on the horizon?<\/h3>\n
What we\u2019ve come to learn over the last 10 to 15 years in the MS space is really remarkable.\u00a0 There has been a ton of research investment and I would say that investment has really paid off.\u00a0 We\u2019ve got a long way to go, but we\u2019ve come a long way.\u00a0 Fifteen years ago, we had three disease modifying therapies available; today we have 14 or 15.\u00a0 There are much more effective treatments available.\u00a0 We know can diagnose earlier.\u00a0 We can identify earlier. We can treat earlier and that makes a huge trajectory on one\u2019s life with the disease.<\/p>\n
We also know much more about the holistic picture including the effect of diet, exercise and the appropriate mental health support.\u00a0 All of that means that we have a much better picture today than we had 15 years ago.\u00a0 It\u2019s not that we don\u2019t need to keep our foot on the gas on research and search for the cure.\u00a0 I often talk about there not being a cure, but multiple cures that are going to eliminate this disease in the future.<\/p>\n
Our world has changed due to the pandemic.\u00a0 Many organizations like the MS Society of Canada depend on charity walks and other in person events for fundraising.\u00a0 What can people do to support the MS Society right now?<\/h3>\n
It\u2019s had a massive impact.\u00a0 Our revenue streams are down somewhere between 50-70% at a time when the need for Canada\u2019s most vulnerable citizens has never been greater.\u00a0 The charitable sector is at a crisis point.\u00a0 You can donate on our site<\/a>.\u00a0 You can get involved on our virtual platform that we\u2019ve dubbed We Challenge MS<\/a><\/strong>.\u00a0 You can do anything that you want to raise money.\u00a0 We have done our MS Walk and we are doing our MS Bike \u2013 all virtually.\u00a0 We have a couple of events happening this fall.\u00a0 We are doing a new MS Run on September 12.\u00a0 We also have a new culinary festival called \u201cSavour\u201d happening in early October.<\/p>\nBurgers to Beat MS<\/a> is a campaign that we\u2019ve been running with A&W Canada for 13 years.\u00a0 A&W Canada’s goal is to raise over\u00a0$1.5 million\u00a0for the MS Society through this year’s\u00a0Burger<\/em>s to Beat MS<\/em>, bringing the campaign total to more than $17 million raised in support of the MS Society. A&W is going to donate $2 for every Teen Burger sold on that day either through A&W Mobile Ordering, drive through, delivery through third parties like UBER Eats, dine-in or take out.\u00a0 Leading up to\u00a0August 19th<\/sup>, Canadians can support the campaign by rounding up their bill with any purchase, by making an online donation at\u00a0BurgersToBeatMS.ca<\/a>, or by adding a donation when ordering through A&W’s mobile app.\u00a0 We would love the support.<\/p>\nAll I can say is please help at a time when people with MS really need us to be there.<\/p>\n
Content updated, August 9, 2021<\/strong><\/em><\/p>\n","protected":false},"excerpt":{"rendered":"
Burgers to Beat MS<\/a> is a campaign that we\u2019ve been running with A&W Canada for 13 years.\u00a0 A&W Canada’s goal is to raise over\u00a0$1.5 million\u00a0for the MS Society through this year’s\u00a0Burger<\/em>s to Beat MS<\/em>, bringing the campaign total to more than $17 million raised in support of the MS Society. A&W is going to donate $2 for every Teen Burger sold on that day either through A&W Mobile Ordering, drive through, delivery through third parties like UBER Eats, dine-in or take out.\u00a0 Leading up to\u00a0August 19th<\/sup>, Canadians can support the campaign by rounding up their bill with any purchase, by making an online donation at\u00a0BurgersToBeatMS.ca<\/a>, or by adding a donation when ordering through A&W’s mobile app.\u00a0 We would love the support.<\/p>\n All I can say is please help at a time when people with MS really need us to be there.<\/p>\n Content updated, August 9, 2021<\/strong><\/em><\/p>\n","protected":false},"excerpt":{"rendered":"