“We are addressing one of the most challenging aspects of research in MS: understanding and treating progressive MS.” Dr. Alan Thompson – Meeting Co-chair
On February 27th, a historic meeting of more than 170 researchers convened for the very first meeting of the International Progressive MS Collaborative. This consortium of knowledge leaders was brought together by two leading MS advocacy organizations – the MS Society and the MS International Federation.
After reviewing a summary of the proceedings, it was exciting to see the significant focus on the need for research and best practice guidelines related to rehabilitation and exercise. A brief summary of key research priorities can be found here.
- “Research is needed to determine ways to keep people exercising beyond time-limited supervised programs.”
- “More well-controlled, larger trials are needed to evaluate symptomatic therapies and rehabilitation methods, particularly cognitive rehabilitation interventions.”
- “There is an urgent need for symptom management and exercise programs to improve quality of life for those who are severely impacted by MS progression.”
The importance of confidence, self-management, and modification
The phrase, “keep people exercising beyond time-limited supervised programs”, really sticks out for me. I interpret this to mean that people living with MS are struggling with self-management. In 2012, Ploughman et. al. published findings from a survey focused on self-management drivers/barriers for older adults with MS. The excerpt below captures some of these key challenges.
“Over years and decades, learning from life experiences, trial and error, and interactions with health care professionals, participants seemed to consolidate MS into their sense of self. Self-determination, social support, strong problem-solving abilities, and collaborative relationships with health professionals aided adaptation and coping.”
- These pillars of self-management can serve as a reliable litmus test for evaluating current best practices and developing new tools that drive self-efficacy, planning, and effective HCP communication.
- I think we will also find that patients need to learn how to modify “cookie cutter” exercise/wellness programs to meet their preferences and physical strengths/challenges. This is a skill that needs to be developed.
- I wonder if we are overlooking the unique emotional support that is needed when fighting a chronic, progressive illness that often drives mounting losses – roles, interests, work, relationships, movement, comfort, and financial difficulty.
Moving from “exercise” to “staying active”
I stumbled on a great online blog/organization entitled, “Active MSers” that offers many tips for people with MS to stay active. I really like that they add a disclaimer that it is important to talk with a healthcare provider prior to starting a new activity. I also like that they use the term “active” in their name. As health educators, we are trained to use the phrase “staying active” rather than “exercise”. Exercise tends to have a negative connotation for patients and is actually a limiting term. We can improve/maintain health and wellness in many ways, beyond traditional “exercise routines”.
The challenge with these expansive, narrative lists of exercise routines is that a person dealing with depression and fatigue can often become intimidated, overwhelmed and defeated before they ever start.
So, in the spirit of best practice sharing, I thought I would share some thoughts that come to mind after being inspired by the great work and recommendations coming out of the IPMSC summit. It would be great to hear other thoughts from people living with MS and the dedicated healthcare providers who support them.
- Involve the person with MS in assessing for hobbies, interest, wellness preferences, and need for modification based on symptoms
- Develop an Action Plan that breaks down the “abyss” of exercise into small daily or weekly goals that allow the person to gain/build confidence and track/celebrate small victories.
- Involve key healthcare extenders on the treatment team such: Yoga/Pilate instructors, massage therapists, dieticians, physical therapists, occupational therapists, and home care professionals
- Provide a check-in opportunity after a few weeks to allow the person with MS to share progress with their care team and modify based on needs
National MS Society
What ways do you stay active? Tell us in the comments below.
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