VOLUME 39 • NUMBER 136
SPRING / SUMMER 2014
2ND QuEBEC SuMMIT ON MuLTIPLE SCLEROSIS
RETROSPECTIVE: 6-7 MS WALK AND MS BIKE 11
Message from the Executive Director
Sleep Issues in MS From the Managing Pain & Sleep Issues in Multiple Sclerosis brochure, produced by the MS Society of Canada and its American counterpart.
The year 2014 will be an exciting one in many respects. First of all, I’m pleased to announce that, following the success of our 2012 event, a second Quebec Summit on Multiple Sclerosis will be held in September. This one-of-a-kind event will be an opportunity for eminent neurologists, researchers and other health care professionals to get together and talk with people who have MS and their families. In addition, about a dozen presentations will be held across the province during the year on topics of interest such as emerging treatments, and a series of short Web videos on physical activity will be created.
In 2014, we will also celebrate the 20th MS Walk and the 25th MS Bike. Thanks to these flagship fundraising activities, we have raised more than $32 million since they were created. This money helps the MS Society pursue its mission. The MS Society is determined to keep innovating so it can continue to stand out; thus, it is important for us to develop new activities and move ahead with new projects. For example, after its dazzling success last year in Quebec City, the Muck MS obstacle course will return to the capital this year, and also to the Eastern Townships. Finally, we will present a brand-new event, Toqué! for MS: a gala evening whose honorary president will be Louis Vachon, President and Chief Executive Officer of the National Bank. Continuing to listen to the needs of people who have multiple sclerosis and offering them services throughout Quebec remain our top priorities and the foundation for all the initiatives we promote. This year, more than ever, I urge you to join forces to achieve our common goal: to end MS in the near future! MS
MS Quebec • SPRINg / SuMMER 2014
Editor: Céline Patenaude Assistant Editor: Nathalie Kessler Executive Director: Louis Adam Legal Deposit – Bibliothèque et Archives nationales du Québec, 1989 Legal Deposit – Library and Archives Canada Thank you to all our collaborators. Désirez-vous recevoir votre revue en français ? Composez le 514 849-7591 ou le 1 800 268-7582. Member of:
Consequences of poor sleep Everyone has experienced lack of sleep at some point in their lives and is well aware of the effects of a reduced quantity and quality of sleep. Problems falling asleep, staying asleep, or getting the right kind of sleep prevent people from waking up feeling refreshed. If you’re not getting the proper amount of restful sleep — eight hours a night — your thinking may not be as sharp, you’ll feel tired throughout the day, and you may not be as productive. With MS, that’s just the beginning because many symptoms can be connected and affect overall quality of life. Cognitive impairment can be magnified by lack of sleep. Balance and gait can be affected by reduced sleep quality, making
ISSN: 0822-5702 Published by: Multiple Sclerosis Society of Canada, Quebec Division 550 Sherbrooke St. West, East Tower Suite 1010, Montreal, Quebec H3A 1B9 Tel.: 514 849-7591 or 1 800 268-7582 Fax: 514 849-8914 or 1 877 387-7767 E-Mail: firstname.lastname@example.org Website: mssociety.ca/qc
Everyone needs quality sleep Everyone needs quality sleep to maintain good health and feel productive. Sleep disorders can be an added barrier to quality of life for people with MS, in addition to fatigue, pain, and many other symptoms. Studies suggest that people with MS may be up to three times more likely to experience sleep disturbances than the general population. In addition, they are about twice as likely to experience a reduced quality of sleep. Poor sleep has serious consequences for cognition, fatigue, mood swings, and physical symptoms such as balance, spasticity and pain.
you more prone to falls. Waking up not feeling refreshed may be a sign that your level of emotional well-being is affected. In turn, not getting the proper amount of sleep can also affect your mood and emotional health. Warning signs of a sleep disorder It is recommended that you should seek help for your trouble with sleep or fatigue if it interferes with your quality of life. Look for these warnings signs that you’re not getting the appropriate amount of sleep or quality of sleep: • You’re tired right after getting up and don’t feel refreshed • You need an alarm clock to wake up • You fall asleep during the day when you don’t want to • You either can’t fall asleep, or wake up after a few hours and can’t fall back asleep • You kick off the bed covers • You get up frequently at night • You snore Addressing these warnings signs with your healthcare team can be the first step towards determining if you have a sleep disorder and managing the effects of a reduced quality of sleep. To read the full version of this text, go to mssociety.ca/qc/services/Publications-MS. html (Symptoms and treatments section). MS
INVITATION – Annual General Meeting of the Multiple Sclerosis Society of Canada, Quebec Division, for the Fiscal Year of January 1 to December 31, 2013 Date: April 12, 2014, from 11 a.m. to noon Place: Hôtel Le Victorin, 19 boul. Arthabaska Est, Victoriaville, Quebec g6T 0S4 Please confirm your attendance by April 4, 2014, with: email@example.com or 1 800 268-7582
MS Quebec • SPRINg / SuMMER 2014
By the time you read these words, 2014 will already be well under way. As I think about the projects that are planned for the months to come, I’m filled with enthusiasm. The true strength of our organization is the dedicated commitment of every one of the people who make it up and our shared determination to improve the quality of life of people who must cope with MS every day.
Nadine Goes Live: Your Eyes and Ears at Scientific Conferences
Summiting for MS
By Nadine Prévost, Director of Services and Social Action
The ECTRIMS Congress: A fascinating event! I was delighted to take part in the ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis) congress for the second year in a row. I wanted my readers to experience all the buzz of this important event—if only from a distance. Every year, this conference attracts MS specialists from around the world. From October 2 to 5, 2013, over 7,500 participants came together in Copenhagen, Denmark. The program included more than 1,000 presentations on the results of new studies that had been selected from about 1,500 submissions. All I had to do was choose the subjects I thought readers of the blog would find most interesting.
The endMS Conference From December 11 to 13, 2013, I was in Saint-Sauveur for the endMS Conference, which welcomed over 200 Canadian researchers. The speakers—top experts from near and far—gave scientific presentations on the following topics: risk factors and pathogeny, biology of André Lespérance and myelin and central Dr. Helen Tremlett at nervous system repair, the endMS Conference in evolution of MS, Saint-Sauveur rehabilitation and symptom management, immune system/central nervous system and treatments. This conference is an initiative of the endMS Research and Training Network, which was established by the MS Society to maximize the capacity to conduct research on MS. The ultimate goal: speed up the pace of discovery.
MS Quebec • spring / summer 2014
This conference was a big success. As an observer, I could see the real camaraderie that exists among Canadian researchers and students. During his visit to Saint-Sauveur, André Lespérance, a member of the board of the Quebec Division of the MS Society, said that he was happy to see such a well-established network for sharing knowledge in the field of multiple sclerosis.
You can meet local, national and international researchers through my blog, Nadine en direct, at sp-nadinedirect.blogspot.ca (in French only).
Bella Center, Copenhagen
You can also visit Dr. Karen Lee’s blog for regular updates on MS research and events at drkarenlee.ca. MS
Following the great success of the first Quebec Summit on Multiple Sclerosis in November 2012, the MS Society is repeating the experience this year, and integrating something new. In September 2014, participants at the second Quebec Summit on Multiple Sclerosis will be able to take the word “summit” literally! While multiple sclerosis specialists will be telling the public about their latest MS research inside the Hôtel Mortagne, high outside the building adventurers will defy gravity by participating in our fundraising activity: deepelling. Come out and learn about new research orientations in epidemiology, lifestyle, immunology, symptom management and upcoming treatments for MS at the second Quebec Summit on Multiple Sclerosis, which will be held on Saturday, September 27, 2014, at the Hôtel Mortagne in Boucherville, from 9 a.m. to 4 p.m. During this special day, at which health care professionals and people with MS will meet and mingle, we will have a chance to hear specialists and eminent researchers—all members of the MS community— report on the progress made in research. At lunchtime, participants will share tables with the new generation of researchers, and everyone will benefit from this discussion period. As for the participants in the deepelling activity, their challenge will be more psychological than physical. There’s no need to be an athlete to perform this feat. Whether you’re a hard-core thrill-seeker or you just want to push yourself a bit, you can join health care professionals, MS Society employees, people living with MS and adventure lovers in taking up the challenge. Summiting together for the cause: an intense and enriching experience that will bring the Multiple Sclerosis Society of Canada a few steps closer to a future without MS.
To register for the Summit or the deepelling activity, or obtain more information about it, visit mssummit.ca or call 514 849-7591 or 1 800 268-7582 (bilingual event). MS
What is deepelling? Deepelling is an activity that allows you to push your mental limits. The challenge involves descending a vertical wall, such as a cliff or building, with your body parallel to the ground, like Ethan Hunt in Mission impossible. This rappelling technique was first used by the military and rescue teams but is now available to the public and has been growing in popularity. Training will be provided on the ground, and experienced trainers will ensure that all participants remain safe during this sensational activity, which is suitable for all ages.1 Participants will be able to make two descents so they can really relish the experience! MS 1. Children aged at least four years old and adults, weighing from 35 to 385 pounds.
MS Quebec • spring / summer 2014
Live from two scientific conferences in 2013, I had a chance to communicate about what’s being done in research today, by means of a blog that included articles, written interviews and videos. This blog is for everyone who likes to keep abreast of advances in research.
25 Years of Pedalling for the MS Society
Since 1995, the MS Walk has raised $15.5 million, thanks to all the participants, volunteers and donors who are determined to put a stop to multiple sclerosis.
about this disease: How does it develop? How does it evolve over time? And how can it be treated? In addition, the support of all the event’s participants has enabled the MS Society to offer a range of programs and services to support people affected by MS.
The efforts made at this unifying event in the last 20 years have allowed us to create an exceptional Canadian network of MS researchers and raise Canada to the ranks of the countries that are contributing the most to research on the disease. And Quebec is undeniably participating in the various advances made in this field, which are starting to answer some fundamental questions
Nevertheless, important questions remain unanswered regarding the cause, prevention and treatment of MS, as well as a cure. Continuing to support the MS Society is crucially important for keeping up the hopes of people who have multiple sclerosis, and that’s why your participation in the MS Walk is so important. MS
MS Bike is 25 years old this year. Every year, close to 1,400 participants get on their bikes, rain or shine, and ride 50 to 150 km per day with the goal of ending multiple sclerosis. Thanks to their determination and dedication, the new recruits, veterans and cyclists at every skill level who have been taking part in the event for 25 years have raised over $17 million for the MS Society.
A family united for MS
MS Quebec • spring / summer 2014
“My name is Nicole Carmel, and I’m the leader of the Carmel Lefebvre family team, which has been participating in the MS Walk since 2002. My team is made up of around 50 members of my family, along with friends and former co-workers. As the years go by, it’s so enjoyable to get together and support the cause of people with multiple sclerosis.
It’s true that recruiting as many people as possible and raising money demand a lot of work and energy. Still, on the day of the event, we realize how important our involvement is, when we see all the people who have gotten together for the MS Walk, and all our efforts are rewarded. Every dollar counts, as it helps to finance research on MS and ensure the delivery of all kinds of services for people with this disease, such as yoga courses, walking school, a choir, etc. In 12 years, my team has been able to raise more than $100,000.
1990 MS Bike participant
The Carmel Lefebvre family team at the 2013 MS Walk in Montreal
Because I myself have had multiple sclerosis since 1996, I feel that the MS Walk is the ideal event for raising funds easily and making other people aware of this disease. The 20th MS Walk is the perfect opportunity to join the movement to stop MS!” On May 25, join us on the occasion of the 20th MS Walk organized in your region. To register or obtain more information, visit mswalks.ca. MS
From a “bicycle ride for multiple sclerosis” to “MS Bike,” this Canada-wide event has come a long way since it started in 1990. Several partners have associated their names with ours, numerous teams have been formed for the challenge, and countless volunteers have gotten involved to make the event possible.
Long-term participants have kept MS Bike going in the most amazing way. They have taken part in the event for 5, 10, 15 and even 25 years… Many of these people want to keep fit but they also keep a flame of hope in their hearts that enables the MS Society to move forward in achieving its mission. “Every year at MS Bike, I’m impressed to see the solidarity everyone feels and the desire to make the event a huge success. But what impresses me most is to see the same faces year after year. People who are cycling for a friend, a colleague or, like me, a sister…
My dearest wish? Not to celebrate the 30th MS Bike, because a cure has been found. So let’s keep hoping.” – Patricia Paquin, spokesperson since 1999 “MS Bike is a dynamic and very well-organized happening. The cyclists have plenty to see and enjoy over two beautiful days. Since 1993, my team and I have been participating in MS Bike and it’s always a pleasure. It’s a fantastic way of discovering Quebec’s beautiful regions and country roads. Write it down on your calendar; you’re in for two marvellous days.” – Paul Rochefort, participant since 1993 “That’s right, it’s my 25th MS Bike. Already! Thanks to the Multiple Sclerosis Society of Canada for allowing me to discover all those beautiful landscapes, the many different routes, and this great organization behind MS Bike—it’s like another family for me today… I’ve made many friends over the years and, unfortunately, other people I know have been diagnosed with MS. We’ve got to hang in there… If my pedal strokes and those of my team can help to advance research and allow for the discovery of a cure one day, I’m very proud! Thanks to everyone who joined Les Dérailleurs over the 25 years. As captain, I’ve been spoiled for choice!” – Mario Sorel, team leader of Les Dérailleurs and participant in the MS Bike Tour since 1990 Let’s pedal together! Join us on August 16 and 17 or August 23 and 24, 2014, on the occasion of the 25th MS Bike and let’s gear up for people with multiple sclerosis. To register or obtain more information, visit msbike.ca. MS
MS Quebec • spring / summer 2014
20 Years of Joint Efforts
New Web Videos on Physical Activity
Muck MS in Pink! By Julie Aubin, Julie Garon and Marie-Josée Saindon
This series is intended both for people who have no motor problems and for those who use a manual wheelchair to get around. It follows up on the guide titled Physical Activity, which was recently published for people with MS and is available in hard copy by calling at 1 800 268-7582 or online at mssociety.ca/qc/ services/Publications-MS.html. These two tools can be used separately or together.
Recent studies show that, if you engage in physical activity, you can decrease fatigue and enhance your aerobic capacity, strength, mobility and overall well-being. To start • It would be a good idea to seek advice from a health care professional regarding the type and amount of physical activity that would be most appropriate for you. • If you don’t do any kind of physical activity now, you can benefit from the proposed program, even if you have to decrease the intensity, frequency and/or duration of the recommended exercises. Have fun exercising!
This initiative was made possible by a grant from Biogen Idec. (Web videos in French only)
Answering Your Questions Question from Florane Tremblay in Saint-Sauveur “I frequently have quite intense headaches. Is this related to MS?” Answer from Bibi Roziana Bandhoo, B.Sc.N., M.Sc.N.
MS Quebec • spring / summer 2014
There are several kinds of headaches, including tension headaches and migraines.
According to the World Health Organization (WHO), tension headaches affect more than 70% of the population. The pain they cause is located on both sides of the head and gives the impression that your head is caught in a vise. Stress is one of the main causes of tension headaches. Migraines mainly affect women and can be very disabling. These headaches cause shooting, throbbing pain.
A study1 suggests that people with MS are more likely than the general population to suffer from headaches. According to this study, the prevalence of headaches in people with MS is 55.6%. The WHO estimates the prevalence of headaches in the general population to be 47%. Whether these headaches are caused by MS or not, the treatment remains the same. Possible options include simple painkillers, non-steroidal anti-inflammatories, triptans and antidepressants. Finally, a healthy lifestyle, good stress management and relaxation techniques can help decrease the frequency of headaches. If your headaches are frequent or unusual, or if your current treatment is not giving you the relief you need, don’t hesitate to contact your doctor. MS 1. GEE, J. R., J. CHANG, A. B. DUBLIN, & N. VIJAYAN. “The association of brainstem lesions with migraine-like headache: an imaging study of multiple sclerosis”, Headache, 2005; Jun; 45(6): 670-7.
In the beginning, the Muck MS adventure was meant to be a personal challenge for most of the Pink Ladies. Then we found out that, in addition to taking up the challenge, we could raise money for the MS Society, a cause that is particularly important to us: one member of the team has multiple sclerosis, as do several other people we know. We started training and went out to look for sponsors and raise money. People were more than generous and we were 100% supported in our adventure. On the big day, we were registered in the “participation” component. We were timed, but our result wasn’t that important to us. Our objective was to try to overcome all the obstacles and, most of all, to cover the five kilometres as a team. We waited for each other all along the course and we were very proud to achieve our goal. We were filthy from head to foot, but we had a lot of fun! The icing on the cake was that we won three trophies from the event’s organizing committee: 1. Totale Bouette Oscar, awarded to our team for raising the second-largest amount of money for the event;
The Pink Ladies, Muck MS 2013
2. Totale Bouette Oscar, awarded to Julie Aubin, who won first place for individual fundraising; 3. Crinqués Bouette Oscar, awarded to our team for our motivation and energy before the race and on the day of the challenge. In the end, Muck MS was an enjoyable experience and we had a fantastic time. However, by taking part, we were primarily trying to contribute to the efforts being made to find a cure for this disease, which affects far too many people. MS
The Muck MS experience is returning this year with many new features, including a race in the Eastern Townships and a night race in Quebec City. More than 5,000 participants are expected to join in these two extraordinary races. You can experience a naturally rugged course at beautiful Mont Hatley in the Eastern Townships and an urban route in the Quebec City region. For more information, visit totalebouette.ca.
Congrès Espoir famille Do you need information about MS for the whole family? Would you like to meet other people who are experiencing the same things as you? From October 24 to 26, take part in the congrès Espoir famille at the Delta Sherbrooke hotel and conference centre. To check out the conference program or to register, visit scleroseenplaques.ca/qc/espoirfamilleEn.htm. Conference given by Dr Marc Girard, neurologist. No Web access? Contact Mylène Huet, at 1 800 268-7582.
MS Quebec • spring / summer 2014
The MS Society, working together with two physiotherapists, has created a new series of short Web videos on physical activity conforming to the Canadian Physical Activity Guidelines for Adults with Multiple Sclerosis. These videos, which will be accessible on the Quebec Division’s website as of the beginning of March, will allow you to combine muscle strength training and stretching.
Two summer camps for kids aged 7 to 17 years old who have a parent with multiple sclerosis will be held this summer: the first session will be at Camp Richelieu Saint-Côme, in Lanaudière, from June 22 to 28, and the second at Camp Edphy International, in Val-Morin, in the Laurentians, from August 3 to 10. Campers will be able to take part in a variety of recreational activities, as well as others focusing on MS, so they will be able not only to have fun but also to share their experiences with other kids who are living in a situation similar to theirs and to better understand the disease that one of their parents has. “The MS Camp gave me a chance to make new friends who are like me and who understand that it isn’t easy to have a sick parent. Listening to the others gave me more courage and helped me understand my mother better.” Nicolas “Both the MS activities and the sports activities were appropriate for kids of all ages. I adored the counsellors and supervisors, who were always there for us. The memories of this camp will stay with us forever.” Valérie
The kids at Camp Edphy 2013
The MS Summer Camp is offered free of charge and is financed by the Fondation Club Richelieu Montréal, the Fondation Jeunesse-Vie and the Fondation Jean-Dupéré. Young people who would like to be selected must send a letter or drawing that explains their motivation for participating in the Camp by April 25, 2014. To receive the Camp brochure, please contact Carole Corson at 1 800 268-7582, ext. 2269, or firstname.lastname@example.org. MS
A Way of giving Hope MS Quebec • SPRINg / SuMMER 2014
Would you like to do more to end multiple sclerosis? A legacy gift can let you change the course of events.
Legacy gifts are not well known, but they can be an easy way of making a donation to a cause you care about, without affecting the value of your assets or reducing the amount you want to leave your heirs.
Muck MS is an opportunity for you to meet a substantial athletic challenge—a 5 km obstacle course! To follow up on the dazzling success achieved by the Région de Québec Chapter in 2013, Muck MS is expanding. In 2014, two of these events will be held: on June 21 in Parc du Mont Hatley in the Eastern Townships and on August 30 in Quebec City. Registration has already begun. Tell your friends and family about it! Visit totalebouette.ca for more information. MS
In the wider sense, the term “legacy giving” or “planned giving” refers to any kind of donation that is made in the course of financial, tax, or estate planning. Some kind of legacy giving is possible for you, and you can rest assured that it will have a long-term impact on the battle against MS. The important thing is that it is meaningful to you. For more information, visit mslegacy.ca or contact us at 1 800 268-7582. MS
MS Adrenalin refers to the more extreme events offered by the MS Society. Now you can push your limits with an ultimate experience! A will to keep seeking new challenges and good mental strength are the order of the day for these challenges for thrill-seekers who want to support people with multiple sclerosis. You have a choice: you can try deepelling and descend a building’s wall with your body parallel to the ground, or go skydiving and experience 60 seconds of free fall at a speed of 200 km/h! For more information, visit adrenalinesp.ca. If you live in Mauricie, a deepelling activity is planned in Trois-Rivières! Contact your local chapter for more information. MS
The MS Society is proud to offer an exclusive event organized in cooperation with two of the biggest names on the Montreal restaurant scene and in Quebec’s business world: Normand Laprise, the celebrated chef-owner of the restaurant Toqué!, and Louis Vachon, President and CEO of National Bank. This colourful and flavourful event will be held on the trading floor of the Caisse de dépôt et placement du Québec, on October 16, 2014. Close to 400 guests from the business world, who have different backgrounds and come from different generations, will enjoy a gastronomic experience that is sure to tickle their taste buds. MS
Just a few months remain before the first group of participants in the MS Everest Base Camp Challenge departs! Fourteen people will take up this sizable challenge in October 2014; thanks to their adventurous spirit, they will raise more than $150,000 for the MS Society. After Acotango and Kilimanjaro, Everest will be the third peak scaled by trekkers who want to support people with multiple sclerosis. Best wishes to all the participants! Keep watching for new challenges to come. MS
MS Quebec • SPRINg / SuMMER 2014
MS Summer Camp: 60 Places Available!
upcoming MS Events
April 27, May 25 and September 28, 2014
May 8 to 10, 2014
May 23, 2014
May 25, 2014
May 31, 2014
June 8, 2014
June 21, 2014 Eastern Townships August 30, 2014 Québec
June 29 and 30, 2014
August 21, 2014 A&W Rendez-vous
August 16-17, 2014 Montérégie August 23-24, 2014 Beauce
September 27, 2014 2nd Quebec Summit on MS and deepelling
October 16, 2014
October 2014 and 2015
October 2014 and 2015
Multiple Sclerosis Society of Canada Quebec Division 550 Sherbrooke St. West, East Tower, Suite 1010 Montreal, Quebec H3A 1B9 Return Postage Guaranteed Address Correction Requested
Volunteers Needed The MS Society is currently looking for volunteers for our various fundraising events and different administrative duties. Visit mssociety.ca/qc to obtain the contact information of the ofﬁce closest to you. Your contribution is essential to the success of the MS Society’s events. Thank you for your help!