Living with progressive multiple sclerosis (MS) can be a deeply personal and varied experience. For many, it’s a journey marked by unpredictable changes in their body and mind. Progressive MS, particularly primary progressive MS (PPMS), often begins in mid-adulthood, around the age of 40. Unlike other forms of MS, PPMS doesn’t have distinct relapses or remissions; instead, it involves a steady progression of symptoms over time.
One of the most common symptoms is physical weakness, which can manifest as numbness or weakness in the limbs, often affecting one side of the body or the legs and trunk. Some people experience tingling sensations, similar to small electric shocks, especially when moving their neck. Tremors, lack of coordination, and an unsteady gait are also common, making everyday activities challenging.
Vision problems are another significant aspect of progressive MS. These can include painful loss of sight in one eye, blurry vision, or prolonged double vision. Speech can become slurred, and fatigue is a constant companion for many. Dizziness or vertigo can make it difficult to maintain balance, and issues with bladder, bowel, or sexual function can add to the emotional and physical strain.
Despite these challenges, the progression of disability varies widely among individuals. Some people maintain their mobility and independence for years, while others may need to adapt to using mobility aids like canes or wheelchairs. The key to managing progressive MS is early treatment and a proactive approach to health. Working with healthcare professionals to develop a personalized treatment plan, including physical therapy and regular exercise, can help individuals stay active and independent for longer.
Invisible symptoms, such as anxiety, depression, and cognitive difficulties, are also a significant part of living with progressive MS. These symptoms can be just as debilitating as the physical ones and require attention and support from loved ones and healthcare providers. Understanding and addressing these invisible symptoms is crucial for maintaining overall well-being.
Living with progressive MS requires resilience and adaptability. It’s a journey that involves learning to navigate unpredictable symptoms and finding ways to maintain quality of life despite the challenges. With the right support and mindset, many people with progressive MS continue to live fulfilling lives, finding ways to manage their condition and stay engaged with the world around them.
