Why the title of this chapter? I don't know. Maybe because it's the middle of the night. Maybe because it makes about as much sense as my life and this disease.
Can't sleep. Just when I thought things were on more of an even keel, my husband began experiencing double vision mid morning today. Who do I call? Our neurologist? An eye doctor? Our family doctor? The neurosurgeon?
I started with the neurologist and left a message with her assistant, asking if this was probably related to his FTD and brain atrophy and who should I call? Then called his eye doctor to ask their opinion - was told it sounded neurological and to wait to hear back from our neurologist. Left a second message for the neurologist. Later called our primary care physician's office - who, by the way, recently moved to an administrative position so we have a brand new doctor to start over with in the practice - and spoke with the administrative assistant there. She was very helpful and indicated an urgent care center or the ER was the way to go, as it was late in the afternoon and they could not fit my husband in today. She arranged for us to go to a same day center with imaging services on site. This center would have access to my husband's records, which sure would make things easier.
We headed over there and got in quickly. Ended up getting a CT scan to make sure it wasn't the subdural hematoma growing and rearing its ugly head again. That came back looking pretty good and ruled out that. So what now? Tomorrow - or I guess this morning - I need to get him in to see an ophthalmologist.
While we were in the waiting room, I googled his symptoms on my phone. My gut feeling is that the brain atrophy had just finally chipped away at a particular brain cell, turning off some particular function in his brain. The double vision is not side by side - it is up and down. So he sees, for instance, a road sign right over top of the same sign. When he covers one eye - either one - his vision is fine. When he tilts his head to the right, no double vision. When he tilts his head to the left, no double vision. Weird. I asked him all these questions while we were waiting for the CT scan. These were all from a website I'd googled.
At home, I googled "brain atrophy and double vision" and got a new set of scary things. I think it all points to progression of his disease. After a year of no real obvious new symptoms since diagnosis, here it is. Ugh.
I hadn't posted in a while, but when thinking about what to write about next, I thought of how we didn't have to have a six month follow-up with our neurologist and how that made me feel very alone in this journey with FTD. I thought about how we are on an "as needed" basis - well, frankly, I think we need at least every six months - at least I do. I constantly have more questions, and I think I need the support. I'm not sure I'll notice changes - not sure what "significant" changes are - mostly not sure I want to wonder about all this alone. I guess now we are seeing a significant change - at least that's what I think we're going to find out. I think we're ruling causes out at this point. And I may be jumping the gun. But I don't know.
So - couldn't sleep - too many "what if"'s rolling around in my head. So I'm on my blog - my journal of this ride. More tomorrow.
By the way - my favorite new role - GRANDMA! To a beautiful little boy born July 19. What a joy!
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