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    What to Expect With Primary Progressive MS

    Now and Later

    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.”

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