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Reducing clutter can help people with MS better manage their symptoms and improve their quality of life. Photo by Keith Carlsen

Less mess, less stress

Cleaning and decluttering offer surprising benefits for people with multiple sclerosis.

by Shara Rutberg

Marie Kondo launched a legion of followers with her minimalist approach to home organization, showing people how to declutter by keeping only items that “spark joy.” Decluttering can deliver even more to people living with multiple sclerosis, clearing paths for emotional and physical benefits, says Stephanie Singleton, an occupational therapist diagnosed with MS in 2014.

“There’s substantial anecdotal evidence that clutter is common among people with MS,” says Jennifer Tamar Kalina, PhD. Kalina developed and led clutter management groups at an MS Center and wrote about them in the International Journal of MS Care (IJMS). “Symptoms like fatigue, poor balance and mobility can lead to everyday activities becoming more and more difficult,” she says. “Clutter can start small, like not feeling like doing the dishes. Then, they pile up and pile up until what began as just rinsing off a coffee pot becomes a big ‘to-do.’”

“Diminished cognitive abilities including the capacity to categorize and to make distinctions between what is necessary and what is not” can also lead to clutter, says Josh Bacon, PhD, professor of psychology at Yeshiva University and a research associate professor at NYU Langone Multiple Sclerosis Comprehensive Care Center in New York City. Bacon was the senior author of research about hoarding and cluttering among the MS population presented to the Consortium of Multiple Sclerosis Centers 2019 Annual Meeting. “Hoarding is two to three times more prevalent in the MS community than in the general population,” says Bacon. Hoarding disorder is a Diagnostic and Statistical Manual of Mental Disorders 5th Edition (DSM-5) diagnosis. This is more serious than people with cluttered homes. Both, however, may share roots.

Woman doing dishes

Sarah is a mother of two and was diagnosed with MS in 2012. Photo by Keith Carlsen

There may be psychodynamic factors contributing to clutter as well, Bacon says. “One of the main issues for people with MS is the slow loss of physical and sometimes cognitive control,” he says. Difficulty getting rid of items “may be a metaphor for holding onto those things, whether they be capacities or possessions, over which one still has control.” In some ways, battling clutter is analogous to battling MS, says Kalina. “With MS, patients feel the disease is taking over their lives, just as clutter takes over their environment.” But clutter may exacerbate a sense of helplessness.

Clutter can have a pervasive and profound effect on daily functioning, including physical, financial, emotional, cognitive and social aspects, she says. For example, it can promote social isolation, as someone may be less likely to invite people to a cluttered home.

It can discourage a healthy diet—it’s easier to grab a frozen pizza than chop a salad if the counter is covered in stuff.

Conversely, gaining control of the clutter can make a huge positive difference. “Over the years at our center, dozens of individuals with MS have reported that reducing clutter has had a positive impact on their symptoms and quality of life,” Kalina wrote in IJMS.

Start with a plan
Begin your clutter-busting crusade with a distinct plan, says Singleton, who practices in New Mexico. List the areas of your home you’d like to address.

Then prioritize them, says Dori Cohen, senior occupational therapist at NYU Langone Health.

But don’t plan on doing it all at once. “Start small,” advises Ginny Rieger, an occupational therapist who practices in Wyoming. “Maybe focus on just one drawer first.”

People get really excited about managing clutter, but tackling too much at once can lead to increased levels of fatigue, Cohen says. To prevent that, “make a plan and don’t spend more energy than you have,” she says. The therapists recommended setting aside 15–30 minutes for decluttering. “Remember,” Kalina says, “the clutter didn’t accumulate in one day, and it will not be conquered in one day.”

Build rewards for short-term and long-term progress into your plans to help keep you on track. “If you’re taking on your kitchen first, maybe reward yourself by baking brownies when you’re done,” Cohen says. After completing an even larger project, reward yourself with something bigger, like having people over to enjoy your newly organized space, she says.

Ask for help
Once you’ve outlined and prioritized your tasks, find help. Not only can having a friend, relative or professional empower you to lift and move things you might not be able to on your own, having a third party can help clarify what things to keep and what to recycle or find new homes for without being encumbered by sentimental attachments. They can be a cheerleader to help keep you motivated.

“Most insurances cover occupational therapy services that can give you an ally who is specifically trained for these situations,” Rieger says. “We can come in and do everything from a home evaluation to create a list of recommendations for making your home safer by removing or rearranging furniture to lots of tools and tricks of the trade for arranging things to increase safety and conserve energy.”

Less clutter can mean more energy, Singleton says. “For example, you’ll not waste time and energy looking for things, and it will make cleaning easier.”

Take a seat and take your time
Do as much as you can from a seated position. “Sitting takes 25% less energy than standing,” Singleton says. Set a reasonable pace and take breaks. “Most of all, be kind to yourself. Stop. Take a breath. Then proceed with what you can do.” Make decluttering more fun by putting on some good music, she says.

Labeling can be a great tool in long-term clutter management, says Cohen, especially for people experiencing cognitive symptoms. “It helps people remember where things are and where they belong,” she says, suggesting labels for everything from file folders to bins in the linen closet.

Stay motivated
To prevent the piles from becoming mountain peaks in your mind, “Keep in mind that decluttering helps you remain as functional as possible for as long as possible,” Rieger says. “Remember, you’re taking action to keep your independence high.”

Kalina recommends creating a “model space” in an obvious place, “like a coffee table in the middle of the living room, or a two-by-four-foot section of countertop.” Clear it, and do not put anything on it that doesn’t belong. “This can work as a visual incentive to how the whole room — and ideally the whole apartment — should look.”

Don’t be afraid to dive in and get started, Kalina advises. Spring is the ideal time to bust clutter for a fresh start, sparks of joy and a safer, more functional home. “And once you get going,” she says, “it really does get easier.”

Shara Rutberg is a writer in Evergreen, Colorado.
Spring 2020
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