Answering your questions on symptom management & well-being in progressive MS

The International Progressive MS Alliance gathered together a panel of experts to answer questions on well-being and symptom management in progressive MS during a live discussion.

During the live event, hosted on the MS International Federation’s Facebook page, our panel of rehabilitation experts discussed the effects of pain, cognition, fatigue and mobility and ways of managing them. We know these issues are complex and they can mean that people with progressive MS can’t enjoy their daily life. We heard about discoveries in research that help people better manage their symptoms and improve quality of life with progressive MS.

Jon Strum, a person affected by progressive MS and caregiver for his wife Jeanne, and a lay member of the Alliance Scientific Steering Committee was the host for the event.

He was joined by the following experts in MS rehabilitation and well-being:

• Professor Dawn Ehde, Rehabilitation Medicine, University of Washington, United States
• Professor Jennifer Freeman, Physiotherapy and Rehabilitation, University of Plymouth, England
• Professor Stefan Gold, Neuropsychiatry, Charité University, Berlin, Germany

Over 1,000 people registered for the event from 76 countries worldwide.

Here are some of the questions we asked our experts. We’ve included the timing in the video where the question appeared so you can hear the answer in the video above:

• What can someone do to improve their mobility even if they’re using a wheelchair? (05:47)
• Fatigue seems to be a universal challenge for people with Progressive MS. What can help address fatigue today? (07:52)
• Pain is the symptom that I call a stopper. It gets in the way of being able to fully engage with life. What kinds of things can people living with Progressive MS do to better manage their MS related pain and what’s on the horizon when it comes to pain management? (11:55)
• Are any programmes you can access on a computer that might help improve cognition? Question from Australia (13:35)
• Where do you see rehabilitation for Progressive MS heading? What might future treatments look like? (21:55)
• Do yoga and Pilates can help improve or preserve mobility? Question from Brazil. (25:40)
• Some people have found that neurologists don’t always consider physical rehabilitation as part of treating MS. So, what’s the conversation that someone living with Progressive MS should have with their neurologist? (26:23)
• This question is about mood and MS. Brain fog and depression are a big part of some people’s secondary Progressive MS symptoms. If you’re on antidepressants but not feeling any better, what’s your advice? (34:50)
• Where do you see treatment for fatigue in Progressive MS heading? What might future treatments look like? (36:56)
• What strategies can people use to help with cognitive challenges? (38:33)
• What are some of the things people can start doing now that will help them better manage the symptoms that we’ve been discussing and improve their wellbeing? (42:01)
• What can the International Progressive MS Alliance do to move our understanding of enhancing wellbeing for people living with Progressive MS forward and result in better treatments? (44:53)

The International Progressive MS Alliance has also gathered together some of the best resources on the topics we discussed in the Facebook Live. To access the resources we mentioned during the Facebook Live, click here.