Navigating the Slow Climb: Our Journey with PPMS
Living with Primary Progressive Multiple Sclerosis (PPMS) can often feel like we are navigating a different world than our peers with relapsing forms of the disease. While many in the MS community deal with flares and remissions, our experience is more of a steady, uphill climb. One person in our community poignantly described this feeling by saying, “I am the Titanic passenger, wandering the sinking ship as if in purgatory, always being told, ‘This lifeboat is not for you. Go find another.’” It is a unique path, but it is one we do not have to walk alone.
Understanding the PPMS Difference
For many of us, the diagnosis itself was a long time coming. Because our symptoms often start subtly and worsen gradually, they can be mistaken for the simple aches and pains of getting older. Unlike other types of MS that are driven largely by inflammation, PPMS is often characterized by more lesions in the spinal cord. This leads to the heavy legs and balance issues that many of us know all too well. As one of us shared, “Your normal continually changes and PPMS doesn’t give you a break, ever.“
Because we make up only about 10 to 15 percent of the MS population, it can sometimes feel like we are an afterthought in research and treatment. While there are a dozen treatments for relapsing-remitting MS, we often find ourselves waiting for our turn. One member of our community noted that “while the relapsing community has treatment choices, the progressive community waits patiently, or sometimes impatiently, for our turn.“
Facing the Cognitive Fog
It isn’t just our physical mobility that changes; our “thinkers” often take a hit, too. Many of us struggle with what feels like a cobweb in the brain, making it harder to find words or process information quickly. One community member shared the heartbreak of having to leave a career due to these changes, noting that “it’s one thing to have cognitive issues like memory problems… It’s something entirely different when you have actual diagnoses of cognitive decline.“
Even when the fog rolls in, we find ways to adapt. We learn to use GPS for familiar routes and lean on tools like brain-training apps or simple puzzles to stay sharp. It is about hacking our lives to fit our new reality. As one person bravely put it, “I do have cognitive decline, but cognitive decline does NOT have me!“
Finding Our Power Through Lifestyle
While we wait for more medical breakthroughs, many of us have found strength in taking control of what we can. Nutrition and movement are huge pieces of this puzzle. Some have seen success with specific dietary protocols, like the Wahls Protocol or keto-based diets, to help manage fatigue. One person noted that “something seems to be preventing the progression” after years of strict dietary changes and exercise, even when their scans stayed stable for nearly a decade.
Exercise might sound impossible when your balance is off, but it doesn’t have to be a marathon. Many of us find that baby steps like physical therapy, hydrotherapy, or even just stretching, help preserve the muscle we have. One community member reminded us that “muscle stores energy,” and by building that strength, we might just find a little more stamina to get through the day.
The Strength of Our Community
Perhaps the most important thing we can do is stay connected. Living with a progressive disease can be isolating, especially when we feel like we are “losing pieces” of ourselves. But there is a special kind of resilience that grows within us. We learn to find humor in the “MS drunk walk” and celebrate the small victories, like a good night’s sleep or a day with a little less fatigue.
We must keep pushing forward, supporting one another through the darker days and cheering during the lighter ones. As one friend in the forum encouraged, “Keep your head high, never stop fighting, always push forward with a smile and sense of humor.” We are a community of fighters, and by sharing our stories and our practical tips, we remind each other that we are still here, still capable, and still dancing, even if that dance looks a little different than it used to.
