Diagnosis
Primary Progressive Aphasia. ”What is that?” No one has heard of it… no one that I talk to knows anyone who has lost his or her language. “We don’t even notice,” they used to say. “You sound just fine to me.”
But every conversation is an effort. I hear the sentences in my head, but when I start to speak the words fade. Our amazing brain! The part of the brain where we prepare for speech has its own special function (or, in my case, malfunction). I can think thoughts in my head and carefully say them aloud. But if I think while I am speaking, the thoughts do not come.
My speech surprises me. As the words leave my mouth, I think, “That’s weird. That didn’t sound right!” I repeat myself and can’t get the vowels right. I can answer questions or speak in sentences, but paragraphs, stories or long explanations elude me.
I practice reading in short phrases with a slow pace, like my speech therapist taught me. I see the words. I hear them in my head. I remember enjoying reading out loud. I am surprised by what I hear coming out of my mouth. Is this me speaking so haltingly?
What I read and what the doctors tell me is the scariest part: “progressive.” I don’t know exactly what that means for me. It could develop a number of ways. I could continue to lose my spoken language. I could even lose my language of thought –what would that be like? Dementia. I can’t imagine.
Other diseases I have some knowledge of. This is new to me. I don’t have any examples.
I am going forward into the dark.
