When we first started writing the “Unspeakable Bits” blog, I resolved not to candy-coat the difficult parts of living with multiple sclerosis. I’d always intended to open the conversation about end-of-life and Multiple Sclerosis Disease. I decided to broach the subject now, in the wake of the recent passing of our fellow “MSketeer,” Annette Funicello.Social media sites erupted with kind words and remembrances of the actress. Soon, however, confusion began to set in as Disney’s press release attributed her death to “complications from multiple sclerosis.” When a Canadian television video of her last days was broadcast as a remembrance, confusion became fear and concern.
My greatest fear when the dark days have me thinking about Multiple Sclerosis Disease is that it might get “that bad,” but I must admit that I didn’t really know what that means. What does “advanced Multiple Sclerosis Disease” look like? How does MS get to “end stage”? What are these “complications of MS”?As I stated in my first Unspeakable Bits, I have always felt that information is the counter to fear and that with knowledge – even knowledge of the nasty bits – I can make decisions for myself and my family that are based on sound reasoning. I am only qualified to speak from my personal knowledge and perspective when it comes to this sensitive subject. The Society will bring experts and additional information to address other aspects of the conversation on the Multiple Sclerosis Disease Connection blog, much in the same way we covered the controversial subject of medical marijuana last month, to help shed light on this dark corner of MS.
It’s important to understand that there are treatments, exercises, medications and devices to help us manage the most challenging Multiple Sclerosis Disease symptoms – even those that can eventually contribute to death. Being that death is something all of us must face in our own time, it may be helpful to understand how MS might be a factor. That level of complication is relatively rare, but it does happen. Just as I respect the feelings and experiences of those with the mildest forms of our disease, I also feel it is important to recognize and respect the feelings and experiences of those with aggressive forms of MS that can hasten death.
So, what might be some of the “complications” of Multiple Sclerosis Disease that can cause death?
Severe infections, sepsis
A Society clinical bulletin on Pulmonary Function and Rehabilitation states that “Just as muscular weakness in the limbs occurs early in the disease and increases as the disease progresses, the same progressive weakening occurs in the ventilatory muscles. Ultimately, respiratory complications are considered the major cause of morbidity and mortality in individuals with advanced Multiple Sclerosis Disease.”