Map of the world in orange with purple dots in Australia, America, Canada, and Europe.

Symptom management and wellbeing in progressive MS

I recently had the privilege of hosting the International Progressive MS Alliance’s Facebook Live event. It involved interviewing a panel of international MS experts on symptom management and wellbeing in progressive MS.

The panelists included:

  • Professor Jenny Freeman, a professor in Physiotherapy and Rehabilitation at Plymouth University
  • Professor Stefan Gold, a professor of Neuropsychiatry at the Charité Medical School in Berlin
  • Dr Dawn Ehde, a professor and psychologist from the University of Washington.

A global response

Our discussion focused on some of the most challenging symptoms of progressive MSfatigue, cognition, pain management, and mobility. As well as my own questions, the panelists also answered questions sent by people watching the event around the world. The countries included Israel, Brazil, Italy, Spain, Australia and the UK. A clear reminder that progressive MS is a complex global problem that requires a global response.

As well as discussing advances in symptom management research, the panel also provided specific actions that people with progressive MS could take today to better manage their symptoms.

Managing MS fatigue

Our audience asked lots of questions about fatigue. I wasn’t surprised as it’s one of those symptoms that can keep people from fully engaging in their lives.

Professor Gold explained that while MS-related fatigue can feel like one symptom, it can be the result of several things that are going on at the same time. Some of these are biological and might require a drug intervention. But other things may contribute which are more immediately addressable.

For instance, while tiredness and fatigue are not the same thing, if someone is tired, their fatigue will feel worse. So the solution there is to take steps to make sure you’re getting enough sleep.

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In the past, many people believed that exercise wasn’t helpful for people living with MS. Professor Freeman explained that research has shown that some people with MS can benefit from exercise.  Jon Strum

Treatments for pain in MS

Dr. Ehde also reminded us of the non-drug treatments that can also help people to better manage MS-related pain. Mindfulness meditation is one treatment strategy that scientific studies have shown can help.

Exercise and MS

In the past, many people believed that exercise wasn’t helpful for people living with MS. Professor Freeman explained that research has shown that some people with MS can benefit from exercise.

She shared some of her own breakthrough research which found that spending just 30 minutes daily in a standing frame at home could improve mobility in people with progressive MS. The message was to try doing at least some form of physical activity - "get up and do what you can!"

Future treatments are coming

What impressed me most about the information all the panelists shared was that there were so many different treatment strategies that could immediately be put into practice.

I came away feeling that as technology provides scientists with new tools, the pace of discovery will continue to accelerate. And this means that “future treatments” aren't nearly as far down the road as they once were.

Watch a replay of the event on the Real Talk MS website

Jon Strum's wife lives with progressive MS. He is one of three lay members of the International Progressive MS Alliance Scientific Steering Committee, and also hosts the RealTalk MS podcast.