I’ve been writing, and thinking, about self-advocacy a lot lately. I blogged last week about how simply becoming better informed about issues facing people with MS can be a first step toward advocating for oneself.
I wrote that I don’t have a lot of experience as a self-advocate when it comes to managing my life and my condition. But on further thought, I have recognized one big area in which advocating for myself – by making sure I schedule time to exercise every day – has paid off in a big way. I have placed physical activity at the top of my daily to-do list. Making sure everyone around me recognizes and respects that has taken a bit of effort over the years.
When I was diagnosed, in 2001, lingering doubts remained in some experts’ minds as to whether it was advisable, or safe, for people with MS to engage in physical exercise. It’s hard to believe nowadays, but people with MS were once cautioned to refrain from physical exertion for fear it would exacerbate their symptoms or even hasten the progress of their disease.
But my instincts – and my own neurologist – told me otherwise. I simply knew that running, riding my bike, taking a hike, swimming and (when eventually I discovered it, yoga) made me feel better, stronger, more in control. It might have been easier, in a way, to just sit around on my duff. But my body felt compelled to keep moving.
I was also inspired by the former Olympic skier Jimmy Heuga, who was diagnosed with MS in 1970, when he was 26 and at the peak of his professional skiing career. Though doctors recommended he stop skiing, he didn’t. Heuga, who died in 2010, was a pioneer in helping the general public and physicians understand the benefits of physical exercise to people with MS.
Of course, it’s now widely accepted that physical activity can be enormously helpful to those of us with MS. Appropriately selected exercise can build and maintain muscle strength, coordination and balance. For those whose symptoms are heat-sensitive, alternatives such as swimming or choosing cool environments to exercise in can make physical activity more comfortable.
The National MS Society recently posted on its website a link to a useful article about exercise and MS; aimed primarily at African Americans with MS, the information it offers – particularly its long and varied list of exercise options – is applicable to all of us. The article wisely reminds us to check in with our physicians before embarking on a new exercise routine, just to make sure it’s a good fit.
One fun mode of exercise (one that might not even seem like exercise at all!) is the video game Dance Dance Revolution (DDR), in which on-screen directions guide you through a complicated dance routine. The level of difficulty can be adjusted to accommodate any skill level (thank goodness for me; I’m terrible at DDR!). A studybeing conducted at The Ohio State University Wexner Medical Center is examining whether, for people with MS, DDR can lessen the cognitive and physical impacts of the disease.
According to a press release about the study, “In the ongoing trial, participants exercise using DDR three times a week for eight weeks. The patients’ cognitive functions are tested at the beginning and end of the trial, and functional and structural magnetic resonance imaging is used to detect brain circuitry changes.”
The release quotes research team member Nora Fritz as saying, “DDR requires a lot of cognitive processing. Players must look at a screen and time their movements to the arrows on the screen…. Incorporating DDR into standard MS treatments has the potential to improve balance, walking, cognition and motivation.”
Those potential benefits aside, when I’m doing DDR – or running, walking, riding, or doing downward-facing dog – I try to concentrate on how good it feels to move and how much fun life can be. Breathing hard, sweating, and using my muscles are things I do for myself to keep my body and mind healthy. They are also things I have learned never to take for granted.
Nor do I take for granted the vital role exercise plays in managing my MS. That’s why I insist on taking time to get out and get moving every day – even when I have to assert that need as a top priority.
Learn more about exercise and MS at the National MS Society’s Exercise page.