Searching for answers about wellness and multiple sclerosis
In August 2015 the MS Society of Canada reached out to the community to better understand how people living with multiple sclerosis view wellness, learn about what they do to improve their own wellness, and narrow in on the gaps in research, health practices, and policies around wellness and MS. We accomplished this through an online survey that focused on nutrition, physical activity and emotional wellbeing. We wanted to know if people living with MS incorporated healthy living approaches in these areas and, if so, how? Do they partake in physical activity? Who do they turn to talk about daily physical and emotional challenges? What kind of research do they feel would help address unmet needs in wellness and shape strategies that enable people with MS to live a better quality of life?
Why did we do it?
Multiple sclerosis is a chronic condition that can have enormous impacts on a person’s ability to carry out everyday tasks, perform on the job, engage in social relationships and live life to its fullest potential. While managing MS is possible with medication, people are becoming more aware of other approaches to dealing with symptoms and leading a healthy lifestyle, such as exercise, maintaining a healthy diet, effectively coping with stress, and so on. At the same time, the MS Society recognizes the importance of funding research and developing programs centered on wellness. Together, these principles led to the creation of the MS Wellness Survey, which allowed the MS Society to have a deeper understanding of what is most important to people living with MS in terms of wellness and to harness this information in a meaningful way to shape future priorities and activities within the organization.
What we found
The MS Wellness Survey received an overwhelming response from the public, with 1,032 people affected by MS submitting responses from across Canada. The survey contained questions about the needs, practices, gaps, and impacts of nutrition, physical activity and emotional wellbeing, defined as follows:
Poor diet has been linked to chronic disease and it is becoming increasingly recognized that maintaining a healthy and balanced diet is a key component of disease prevention and management. Since food serves as an important aspect of individual, social and cultural satisfaction and development, the interest in nutrition and diet as a driver of wellness is very high, and individuals are keen to take control over what they eat and to learn about what makes a healthy, MS-friendly diet. Nutrition can include food, supplements, and specialized diets.
Here’s what our survey respondents had to say about nutrition:
“I would like to know how the foods I eat affect my multiple sclerosis. Are there foods I should avoid because they could lead to flare ups, or are there foods that I can eat that will help with some of my symptoms?”
“When I was diagnosed with MS I took a course and am a certified holistic nutritionist. Learning how to use food to heal has been a life changer - no tin or packaged food, mostly fruits and vegetables, greens, and antioxidants. I would eliminate coffee, sugar, aspartame, and saturated fat. I learned how to use food to help cope with MS.”
“I am interested in understanding if/how what I eat affects my symptoms AND my MS progression.” “There is so much nutritional information available these days, with "new facts" promoted every day. Well-researched and authoritative information about nutrition and MS is much needed.”
“People with MS need information about how to maintain a healthy weight while dealing with the challenges associated with MS (e.g. getting to the grocery store, food preparation, etc.)”
MS can bring about long-lasting disability that can impact mobility and bring about significant pain and fatigue. Research is demonstrating that maintaining an appropriate level of physical activity is critical for people living with MS. Involvement in physical activity programs that are tailored to an individual’s abilities and comfort level promotes improved muscle strength and endurance, flexibility, coordination and balance, as well as a sense of fulfillment and increased sense of wellbeing among people with MS. Physical activity can include exercise (anaerobic and aerobic training), sports, gardening, taking children to the park, and other hobbies that help people stay active.
Here’s what our survey respondents had to say about physical activity:
“I would also like to see the MS Society and health professionals promote more ways for people with MS to exercise in a group setting - sport, games, classes, etc. - for those of us who aren't enthused by gym-type exercises.”
“I strongly believe physical activity is important in dealing with MS! But would like to see research to confirm this.”
“I am interested to know what types of physical activities people with MS prefer. All of us have different levels of being active; some of us get tired faster, overheat faster, or just get plain sore faster. What could be done to level these out?”
“I am physically active with the support of my husband. When I am physically active, I experience a feeling of wellbeing. Also, when I'm physically active (e.g. swimming in the pool), it gives me an opportunity to break my isolation and to interact with other persons.”
“My MS symptoms are much worse when I am active, but I recover after a day. The question is does the exercise help or hurt over the long run.”
“My only concern really is the heat. My body heats up when I exercise and I do not want to swim. So trying to find core exercises is sometimes hard for me. But one should always exercise. Just try to find the right fit for you.”
The effects of MS reach beyond physical wellbeing, as the disease can also have considerable impacts on a person’s mental and emotional state, both due to the challenges and stress of having a chronic disease as well as the neurological effects of the disease itself.Emotional wellbeing encompasses mood disturbances like depression and anxiety, cognitive challenges, fatigue, stress management, work-leisure balance, and the ability to build and maintain fulfilling relationships.
Here’s what our survey respondents had to say about emotional wellbeing:
“While my MS health care team are well-versed in MS, they sometimes lack compassion when I discuss the softer, intangible symptoms of MS and the concerns that I have (e.g. fatigue, cognitive dysfunction, vertigo, malaise, etc.)”
“I recently met a person who has MS that I can open up to. I never had that before. I think it is important to try and find a good connection with somebody who understands and will be honest with you. He has changed my life.”
“For the most part, I am fine emotionally. But fatigue is a big problem for me, as well as balance. Some days I have to force myself out the door to take a short walk with my walker. And many people don't seem to understand when I say ‘I can't’.”
“One of the hardest things is the impact MS has had on my personal relationships – with friends, family, and the general public. MS changes how we see ourselves, and how others see us, and that is very difficult to deal with. There's so much that we want people to understand, but it's just so difficult to communicate it to them.”
“Cognitive dysfunction is the worst. It is fatiguing in and of itself, but it also makes relationships and working outside the home impossible at times. When you can't concentrate, or remember where you left your car, keys, state of mind, you feel discouraged.”
The survey also invited people to be “researcher for a day”, and develop a research study or invention that would address barriers in wellness and ultimately help people with MS to live better. This part of the survey offered an opportunity for respondents to be creative and think outside the box when creating a study, intervention, program, or product that they would want to test to see if it would improve wellness among people with MS.
Researcher for a Day
A number of themes that were identified from the survey responses:
- The majority of respondents wanted to see more research into how certain foods and types of physical activity affect their MS symptoms. This reflects a need for more immediate wellness approaches to coping with symptoms.
- Many respondents listed fatigue and cognition as areas that they would like to see addressed through research in terms of cause and ways to effectively manage fatigue and cognitive dysfunction.
- People living with MS more often turn to family and friends to discuss their emotional wellbeing.
- Respondents touched on isolation and loneliness, incorporation of social and peer support groups, mentorship, addressing how people perceive their disease (stigma), expressing the need for more independence and ability to participate in the community, and managing stress, anxiety, fatigue, and relationships.
- Responses centered on nutrition discussed the effects of specific foods on their disease, barriers to accessing healthy food, and the creation of meal programs or food preparation workshops to eat healthy and create a shared sense of community.
- In terms of physical activity, respondents were interested in approaches that would provide widespread access to gyms and trainers, and discussed the idea of home-based exercise programs and non-weight training activities like yoga.
- A priority identified was improved access to integrated, multidisciplinary MS management programs that include neurologists, rehabilitation specialists, diet specialists, mental health professionals, and community service providers.
- Many of the researcher for a day responses overlapped in theme, often linking approaches in an effort to boost outcomes in more than one wellness area.
What happens next?
The information gathered from the MS Wellness Survey will play an enormous role in shaping research priorities and informing future research funding programs related to wellness. It’s important that the research that is funded addresses fundamental gaps and needs among people living with MS in terms of nutrition, physical activity and emotional wellbeing, and that the outcomes of the research will inform lifestyle behaviours and help improve healthcare policies and practices.
Inspiring students to develop real-world wellness solutions for MS
Recently, the MS Society presented the results of the survey to participants of a 2-day competition called Hack4Health. This event called upon undergraduate and graduate students from the University of Waterloo, who came together to create innovative wellness tools and solutions for people living with multiple sclerosis and Alzheimer’s disease. Because students came from backgrounds such as engineering, project management, computer science, graphic design and others, this event yielded novel, tech-savvy, real-world ideas that addressed and incorporated feedback from the MS Wellness Survey. The MS Society will be awarding up to $15,000 in grant funding for top teams to help them further develop their applications under the guidance of an experienced researcher.