Somehow I doubt the disease is changing, I suspect that frankness in discussing MS is changing. Of course with a 20+ year history of “living with MS”, we have the perspective of ‘tribal elders’
It seems to me that medical information is filtered to maximize hope. While well-intended, patronizing people and families facing challenges can create problems. In part this journal was created because we knew that too often MS progression was “forgotten” in mainstream MS publications. People and families just seemed to fade into silence.
A neurologist will drone on about how cognitive dysfunction symptoms can range from mild to Dementia. … Wait a minute - STOP! The word Dementia alone sends you directly to the ‘worry chest’ to search for the appropriate panic button, finally selecting the one labeled “freak out”. This, in turn, invites denial of early symptoms, especially if intermittent.
Reading this recent MS Connection article I couldn’t help but remember and reflect. Back in the “10% era” when Patti’s symptoms began I lost count of the number of times I was asked “Are they sure she has MS?”
One guaranteed "free" litmus test of cognitive dysfunction is when people stop asking you questions directly about your own health. <grin>
Like most people at the onset of cognitive dysfunction Patti was not even aware. How could she be? It is the fingerprints left by mysterious mistakes or faulty reasoning that tells the story.
To be continued …
(I’m working on a personal goal of word count in entries so this “thought” will have to be in two parts.)