What are some of the biggest fears of people with MS?
Particularly with people newly diagnosed, I’ve found there’s very much a fear of loss of mobility and of degeneration. They have concerns about losing control of their body, and they feel uncertain about the future. They often don’t appreciate the variability of MS—that it’s different in different people. I think sometimes the fears outpace the realities, because with the treatments we have now, there’s a lot more time for them to do things, whether it’s working at a certain job, having a family, traveling, or something else.
What should I tell family members about how MS affects me?
It’s important to communicate that MS isn’t always going to affect you the same way. Symptoms can change from day to day, and new ones can arise anytime. Sometimes there are major symptoms that others can’t see, such as fatigue, depression, pain, or numbness—and people with MS need to be supported when experiencing those. They often feel frustrated when others say, “You look fine.” I recommend that family members come to doctor visits if the patient is comfortable with that; if I know a person has been struggling with a particular issue, I can try to steer the conversation that way.
How can I prevent or deal with cognitive changes?
Being on a highly effective disease-modifying drug can be very beneficial for cognition. Beyond that, there’s good evidence that increasing physical exercise and engaging in cognitive activities, even ones as simple as reading the newspaper or being at work, can help. Sometimes we refer people to therapy that can help with memory, problem-solving, or attention to improve cognitive performance and develop strategies for times when they’re having trouble.
What have you found helps people with MS relieve stress?
There’s no one single way—it depends on the individual. Social support is one thing that helps. I encourage my patients to activate their social support when they can—sometimes that’s through an MS group. For many people, exercise and physical activity are important ways to manage stress.
What’s your hope for the future?
I truly hope for a day when we’ll have restorative therapies for MS. A lot of our medications are aimed at stopping disease progression; it would be amazing to have therapies that could restore individuals to where they were and make them feel better. I also hope we’ll have more customized medications that target fatigue or mood changes. We need more and better biomarkers to understand who will be at risk for MS progression, as well as ways to predict disease outcomes so we can better gauge which treatments to use. In the meantime, I wish people would tell me more about how they’re succeeding in living with MS and how they’re managing to handle this very difficult disease. We can learn so much from our patients.