The faces behind the research: Spotlight on wellness and MS, Part I

Today, the MS Society announced the three recipients of the Hermès Canada | MS Society Wellness Research Innovation Grant. Each grant recipient will receive $40,000 over one year to embark on a research study that will lead to a better understanding of wellness and how to integrate physical activity and rehabilitation approaches into MS care and lifestyle for people affected by MS. I’m very excited to see these grants out the door as they represent the culmination of more than a year of planning and consultation with the MS community. This included the valuable feedback on wellness priorities gathered through the MS Wellness Survey, the contribution of our community representatives on the independent review panel for the grants, and the ongoing involvement of people affected by MS in each of the projects as a central pillar of their community engagement strategies.

I’m also excited to learn more about the amazing people who have taken the reins on these studies. Each one of them brings to their study their unique expertise in wellness and/or MS, along with deep roots in their local communities, in a perfect mix that makes them well-positioned to tackle gaps in wellness faced by people affected by MS.

In this multi-part series, I will be featuring interviews with each of the researchers and community innovators leading their respective Hermès Canada | MS Society Wellness Research Innovation Grants to give you a glimpse at the amazing personalities and stories behind the research. This week, we’ll focus on Dr. Charity Evans, Professor of Pharmacy at the University of Saskatchewan, and Jana and Jason Danielson, co-owners of multidisciplinary health and wellness studio Lead Integrated Health Therapies, and their study titled “Determining the Impact of a Pilates Program in Multiple Sclerosis”

Meet the Researcher: Charity Evans

How did you first become involved in the field of MS?

I first became involved in MS research when I started a postdoctoral fellowship with Dr Helen Tremlett at the University of British Columbia in 2010. Almost immediately after starting the fellowship I attended the endMS Summer School in Halifax which was my first major “introduction” to MS.

What do you enjoy most about working in the MS field? What are some challenges you have faced and how have those challenges shaped your research?

I think I have most enjoyed how welcoming and supportive the MS community is. Individuals are willing to share their experiences and be actively involved in research, and the research community is extremely collaborative.

As a relative “newcomer” to the field of MS, I find that the rapid rate at which things are changing can sometimes make it challenging to keep up. However, I think that this is also a positive indicator of how research continues to advance towards finding a cause and eventual cure for MS.

What does wellness mean to you, and why is the study of wellness approaches and strategies an important priority in MS research?

As a pharmacist, it’s easy for me to focus on the importance of drugs for treating a certain disease or condition. Although we have several drug therapies available for the treatment of MS, they are not appropriate or effective for all individuals. Strategies that focus on individual wellness, such as diet and exercise, are other important tools available for helping to manage MS, and health in general.

Describe the importance of collaborating with a community innovator(s) or academic researcher(s). How will collaboration maximize the quality and impact of your study on wellness outcomes for people affected by MS?

What most excites me about this study is the fact that it was envisioned and initiated by two community innovators who wanted to make a difference for individuals affected by MS. This study is a true partnership between academic researchers and community members, and because it is being conducted in the community, makes it that much easier to translate results directly to the people who will most benefit.

Why is it important for people affected by MS to be meaningfully engaged throughout the research process? How does your study engage members of the MS community

The involvement of individuals affected by MS is critical to ensuring the success of our study – who better to provide important insights into the feasibility and usefulness of a potential intervention than those who will be participating in, and ultimately benefiting from, the research.

Initially, two information sessions were held to introduce the idea of Pilates and MS to the MS community. Eleven individuals affected by MS, and the Senior Community Resources Coordinator from the Saskatoon MS Society office, attended the sessions. After the sessions, participants were asked to provide feedback related to the feasibility, logistics, and interest in a Pilates program specifically for individuals with MS; the response was overwhelmingly positive. From there, a pilot Pilates program was conducted over the summer where 9 participants provided direct feedback related to implementation of the exercises and modifications necessary for individual ability levels and symptoms. The plan is to also have one of the pilot participants continue to serve as the MS advisor throughout the study.

Meet the Community Innovators: Jana and Jason Danielson

Describe why you became involved in this research study. What motivates you to learn more about wellness in people affected by MS?

Pilates is a form of movement that does not discriminate on the basis of age, gender, or ability – it is inherently that good.  We came across the work of a Pilates colleague in the US who, due to her own MS diagnosis , researched and developed an amazing resource for teaching movement to a body living with MS. 

We were intrigued to learn that many of the movements we teach did not have to be varied that much and we were confident that the mind body connection created, the neuromuscular benefits, the confidence with managing activities of daily living would be amazing for this population to experience.

The other reason we were motivated to learn more about this population is that we have achieved great success with a class we offer called Empower – which is a class designed for people who are currently or who have dealt with a cancer diagnosis.

We believe strongly that Pilates will fundamentally change the lives of our participants. 

Describe your role as a community innovator in this study. How will you work with your research partner to generate new knowledge and create wellness solutions for people affected by MS?

We strive to find ways to connect with the community and applying for this grant was a decision that was very easy for us to make. We hope to make Lead a ‘Centre of Excellence’ for movement and movement therapy.

We are excited to work with our research team to take our findings and transfer this learning into classes at Lead but also have a goal of creating a teacher training program for other Pilates instructors so that our findings can expand beyond Saskatoon. 

What does wellness mean to you? Why do you think it is important to study approaches to wellness that will improve the health and quality of life of people affected by MS?

Wellness is a mindful state of being.  At Lead the definition of a ‘Lead Experience’ is to educate, inspire and move the bodies in front of us and when this happens, quality of life increases and that person can now enjoy a new perspective on their life.

Compared to other modes of movement and exercise, Pilates is still fairly untapped and there is not much published research in this area. We need to study this approach in order to truly understand the statistical significance that Pilates can have on a body with MS.  This will support the anecdotal, more qualitative information that we have received about Pilates and MS.

What are you looking forward to most in carrying out this study? What challenges do you anticipate?

Looking forward to:

  • Seeing the changes in the participants’ bodies each week.
  • Gaining a better knowledge from an instruction perspective.
  • Being a part of cutting edge research.
  • Building relationships with our research partners.

Challenges: possibly recruitment, but I feel we have a solid plan and have many resources to get the word out.

Stay tuned for the next researcher / community innovator spotlight!

Categories Research

National vice-president, research, past MS researcher, and PhD in Cellular and Molecular Medicine from University of Ottawa. Leads the MS Society's research program to find the cure for MS and improve the quality of life for people affected by the disease.

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