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What to Expect With Primary Progressive MS

Now and Later

Progression rates for primary progressive MS are unpredictable continued...

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.

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