Secondary progressive disease: what to watch for and what helps

If you or someone you care about has been told they’re moving into secondary progressive disease (often called SPMS), that can feel scary. SPMS usually follows relapsing-remitting MS and means symptoms slowly get worse over time, with fewer clear flare-ups. You can still take steps that matter — treatment choices, rehab, and day-to-day changes can make a real difference.

What is secondary progressive disease?

SPMS shows up as a steady climb in disability: walking gets harder, fatigue stays longer, and thinking or bladder control can change. Many people first have relapsing-remitting MS and then, over years, notice gradual decline that doesn’t fully recover after relapses. That shift is what doctors call secondary progressive disease.

Not everyone’s path looks the same. Some people still have occasional relapses; others have mostly slow progression. Your neurologist will use your history, exams, and sometimes MRI scans to decide if you’re in SPMS and whether the disease is active.

Practical steps: treatments, symptoms, and daily life

Treatment now focuses on slowing progression when possible and managing symptoms. Ask your doctor about disease-modifying therapies (DMTs) that are used for SPMS — for example, siponimod is an option for some people with active SPMS. These drugs aim to slow disability, not cure it.

Symptom control matters every day. For spasticity, medications like baclofen or tizanidine can help. For walking problems, dalfampridine (sometimes called Ampyra) can improve gait for certain patients. Bladder issues are common — pelvic floor therapy, timed voiding, or medications can reduce accidents. If medication side effects bother you, discuss alternatives; small changes often make life easier.

Rehab is one of the best investments. Physical therapy keeps muscles strong and improves balance. Occupational therapy shows practical ways to do tasks without stressing your body. Speech and cognitive rehab can help if thinking or swallowing become an issue. These therapies slow decline and reduce fall risk.

Daily habits add up. Regular, low-impact exercise (walking, swimming, seated strength work) helps energy and mood. Prioritize sleep, break tasks into short steps, and use mobility aids early — a cane or walker can keep you independent longer. Simple home changes like grab-bars, better lighting, and placing frequently used items within reach cut frustration.

Mental health matters. Anxiety and depression are common with SPMS. Talk therapy, support groups, and, when needed, medication can make a big difference in coping and motivation.

Finally, talk about planning. Advanced care choices, driving assessments, and work changes are hard but useful conversations. Keep a shared record of medications, emergency contacts, and clear notes for doctors. If you want to explore new options, ask about clinical trials — they sometimes offer access to promising treatments.

Secondary progressive disease brings real challenges, but many things help you keep function and quality of life. Work with your care team, try practical rehab and home changes, and focus on the small wins that make daily life smoother.