Thursday, August 18, 2016

Textbook Anomly

"I don't like him"

"He's better than a lot that I've had," I told my wife earlier today.

"I don't care, I don't like his bedside manner," she insisted.

"Bad bedside manner I can put up with," I plead. I just want a damn diagnosis. He's supposed to be one of their best neurologists and this has has been going on for months."

He had already told me on one urgent phone call a truth I could easily figure out with his repeated reschedules: he is incredibly overbooked and overworked. He's focused on doing the best he can for the patients and not their feelings. Regardless, I think he is alright. Although his lack of diagnosis did help drive me to say the F word about three times directly in conversation to Amy and I almost never do that. Hey, I've been stumbling on a cane for eight weeks. Sue me.

The doc still has not made a diagnosis, but has committed to fully being against a Lewy Body Dementia diagnosis, as he says I am too young. For weeks, he said it could still be Parkinson's. He has still not ruled it out completely that we know of, but is now leaning toward something else. He said they're sending the labs taken today to the Mayo clinic. They will be "rushed" but that means two to three weeks still. The paraneoplastic autoantibody evaluation will test for autoimmune encephalitis.

I don't know exactly what that is, but it does not look particularly less or more terrible than all the other diseases they were considering. Yes, that was sarcasm. But it is important to take into account he did not diagnose me with that, just that he is sending labs to test for it.

As long as my memory loss suffers weekly along with the loss of being able to walk, I'm going to do my best to regularly journal about it here. A bit will be be boring or depressing. Or both. Like seven tenths of it for a while probably.

A couple times today, Amy grabbed my hand and just asked "how are you doing?"

I'm tired.
I'm exhausted.
I just need a break to catch my breath.
I am grateful I have friends and family and faith.
Thank God I have Amy by my side.
Someone has to make fun of the neurologists with me.


  1. You WILL make it thru this. It is so incredibly hard right now for you and Amy. Please, please if there is anything we can do,. Reach out. We love you and are pulling for you.

  2. I'm with both Amy's - shoulder through

  3. I want to make it over soon for a visit. I really hope they figure this out. Call me when you are feeling up to it.

  4. You have our love and prayers. If we can do anything for you, I beg you, Pat, please don't hesitate to call. ❤️