Each of us has our own way of dealing with bad news, and an MS diagnosis is bad news. When someone is newly diagnosed, it is pretty scary. Some people bend over backwards to learn everything they can. Others just live with it awhile, hoping for the best. We all learn as we go along because living with MS is such an ongoing challenge. Living with progressive MS is even more of a challenge.
The positive thinker adopts the mantra: "I have MS, it doesn't have me." There are times MS tries to take over our lives. It's as if the disease is an evil entity with a life of its own, but we must make the effort to ensure MS does not dominate. We are still the people we were before MS invaded our bodies. To stay true to the positive mantra, it is more important than ever to work on a healthy quality of life. I am here to tell you Progressive MS does not indicate the end of life. Our lives are different, but still within our power to shape.
People with Progressive MS face an unknown future that no one can predict. The purpose of this series of articles is to offer information and some comfort and hope. Facing the "scary" parts allows our lives to be more manageable. MSers living with Progressive MS should be prepared physically as well as emotionally. Do the most you can to take care of yourself. Get to know your symptoms. You know your body better than anyone else. The more you can tell your doctor, the better chance you have of getting the best treatment.
It is a good idea to track your progression. Note each new symptom, when a symptom gets worse and when it reaches a plateau. Sometimes that is not as easy as it sounds. My friends and family often tell me I look good, just the same as always. Maybe they are being kind and don't want to tell me if I look pathetic. Regardless, the changes we feel have little to do with our appearance, and often result in more effort required for our daily routine. No one sees and feels the progression as we see it.
Conversely, we don't see what they see. Both Julie Stachowiak and MS Central's own Lisa Emrich tell about having differently sized pupils. They didn't realize it until they were told. Therefore, it is a good idea if we MSers are open to having our friends tell us about symptoms they might notice. This could include pupil sizes or fuzzy thinking or anything we might never notice, but our doctors need to know.
Denise suggests "Find a good Neurologist with a specialist interest in MS, and also an MS Nurse. Don't try to manage on your own. I tried managing on my own for 18 years, and in retrospect it was probably a mistake." Building a knowledgeable care team is a big step to a well-managed life with MS.
Secondary Progressive, the advanced stage of Relapsing/Remitting MS, allows many MSers to simply continue as they always have. Is that to be acceptable? Chatting with two online friends with progressive MS, Beverley and Denise, helped clarify this situation. Let's look at the similarities.