Her eyesight steadily eroded by multiple sclerosis, Mimi now lived in a near-constant dusk. The realization came at a scary time. “I was driving. I thought, I can’t do this anymore. I had to pull off the road and let my friend drive,” says Mimi.
Until then, Mimi had been living “in a deep state of denial” about her advancing symptoms. As her primary progressive MS forced her to hand over her car keys, she remembers, “I knew I had to start planning for a future that included this disease.”
Primary progressive MS: Uncertain futures
Tens of thousands of people in the U.S. are living with primary progressive multiple sclerosis. For them, planning for the future includes all the usual worries: raising children, planning for college, changing jobs, buying a home.
And a few more: Will I be able to walk? Can I continue to work? How will I afford all the equipment I might need? Will I end up in a nursing home?
Planning for future life with primary progressive MS isn’t for the faint of heart. But there are practical strategies for dealing with the uncertainty and challenges of this chronic condition.
Feeling “left out in the cold” with primary progressive MS
People with primary progressive MS have a different illness -- physically and emotionally -- than other MS sufferers, says Rosalind Kalb, PhD, a psychologist with the National MS Society.
“The big thing I see is they feel left out in the cold.” She’s talking about all the advances seen with other forms of MS. “It’s almost like the message is, ‘it’s not for you’ -- not the new treatments, the new research. They’re even feeling left out by health care professionals -- it’s like ‘we can’t do anything for you.’”
The experience of primary progressive MS itself is different, too. Unlike people with other forms of MS, who have attacks followed by symptom-free periods, says Kalb, people with primary progressive MS have, from the beginning, been living with a disease that steadily progresses.
There’s no “bright side” to primary progressive MS. But the absence of sudden attacks may make primary progressive MS slightly less unpredictable than other forms of MS, which can strike suddenly and severely.
“Still,” says Kalb, “just knowing you’re living with a progressive disease doesn’t tell you how fast or how far.”
Progression rates for primary progressive MS are unpredictable
By definition, everyone with primary progressive MS has an increase in symptoms over time. But the rate of progression varies widely.
The proof of this came after researchers followed hundreds of people living with primary progressive MS for more than 20 years. Seven years after their diagnosis, 25% of people with primary progressive MS needed help to walk (for instance, a cane). At the 25-year mark, some people were bed bound -- but a quarter of the participants could still walk without help.
What this and other studies have failed to do, though, is predict who will become disabled and who will not. There’s no test to tell how quickly progression will occur, or what body parts MS will affect.
By the same token, nothing has been shown to slow down the progression of primary progressive MS. Treatments for more common types of MS don’t work well. In fact, the processes underlying primary progressive MS have only recently been discovered. It will take years for research to yield answers and test any new treatments.
Most people with primary progressive MS -- up to 80% -- will slowly experience significant leg involvement. Called progressive spastic paraparesis, it’s a gradual stiffening of the legs. Walking becomes difficult, and eventually impossible, for many.
Fracturing fear: A practical approach to dealing with primary progressive MS
No one wants to plan for a future of increasing disability. The thought of losing the ability to walk, to work, to care for one’s family can be overwhelming. The usual response is panic -- followed by quickly thinking of something else.
Kalb teaches people living with progressive MS how to confront and convert fear into practical action. “The idea is to break fear down into its parts and address each piece separately,” she explains.
“I ask people: What are you most afraid of? For some, it’s being in a nursing home. For others, it’s not being able to work.” Kalb encourages a frank exploration of exactly which aspects of the outcome are so frightening.
After breaking fear into its parts, Kalb advises, attack the parts by acting now. She asks people to consider what they can do today to help make their feared outcome less likely or to be better prepared if it does happen.
“People think that talking about this stuff is bad luck, or losing faith,” she notes. “But what I find is doing it makes them feel more in control. The worst time to plan is when you’re in a crisis situation.”
At heart and at home, an essential makeover
For Mimi, living with progressive MS means both a stubborn resistance and a grudging acceptance of her ever-changing reality. Recently, Mimi reached a new turning point in her life with MS. For the first time, she found herself on the floor, unable to get up to her chair.
Panic set in. “I said, ‘Oh my God, I’m a disabled person!’” she recalls. “There was this rush of vulnerability -- before that, it was always an anger thing.”
A dark depression followed, lasting weeks before lifting. In its wake, she and her husband, John, are working on solutions to their newest dilemma -- no more riding the now-dangerous chair lift to the second floor.
A new fully accessible ground-floor addition to their home in Virginia will be an expensive but necessary project. Thanks to John’s efforts, donated materials from local builders are coming in. And stay tuned: a “home makeover” television program has even picked up the story.
“He went into ‘rescue mode,” Mimi says, referring to John sending out hundreds of letters seeking help from friends, family, and businesses. “And for once I let him,” says Mimi.
As in Mimi’s case, the paradox of having to accept progression while struggling against it is at the center of life for thousands of people living with primary progressive MS. Or as Mimi puts it, you have “to stay in the day and find peace and gratitude with what you’ve got -- because you never know when you’re going to lose that.”