"I'm not sick."

We are waiting for the gastroenterologist today. Waiting. Waiting. He is on time. We are early because Casper was ready too early but could not wait to leave for the appointment. Finally he comes in. We have seen him before. There is some recognition.

"Hello ladies. Why are we here?"

I am quite sure Casper is going to deck him. Calling a butch a "lady" is not such a terrific idea. Over the top humor is even less so.

Casper has decided in the last 48 hours that she's not sick, and she's back in charge. She jumps in where I was left to answer before. "I can't swallow well. I need it fixed."

The doc pulls out her chart, with the full color pics of the last two times we were here before. During those visits he told me, emphatically, that neurological problems have nothing to do with internal organs. I know better now. I am Mrs. Parkinson's Disease, and I have the research under my black belt.

"You were here in 2012 and 2011. There were no issues then. It would be unusual for there to be such a sudden onset of symptoms if it were a stricture."

Hold the phone. No issues? I was here the last two times. I was here when I handed your MD self a printout about PD and said "I think this is PD. It all checks. And her swallow is slowed."

I challenge him, nicely (yes, even I can be nice. Do not get used to it.). "Wait- you found a slow swallow last time. In 2011. Do you see that?"

Oops... (I love those moments. Maybe you should not pretend to be God and listen to family who have a brain and can read and research.)...

"Yes, there was a slow swallow. It looks like there was a problem with that then."

I know this is a stupid question now, but... Why did you NOT make an issue of it then???

"Which neurologist are you seeing who said this is PD?" Nice try. Only the head of movement disorders at UCI and Eisenhower Medical Center.

Then a cry from the exam table: "I don't have PD. They are wrong. This is something else."

Oh crap. And I mean that. Casper is the living example of coping with denial. She cannot, and will not, accept this is PD. That's where she needs to be to cope. I get that. But I have to live in reality to get the help we need. She's choking. She choked three times on our way here. Saliva is now dangerous, especially when she is asleep. Diet 7-Up is not her friend. How do you survive without fluids? We live in Southern California! It's going to be 105 degrees in a few months.

The doc looks at her. He can see the tension, and our primary care provider must have written something, because he's looking at the referral and suddenly accepting her denial. "I need to see if there are any changes. There were no strictures in 2011. It would be odd to have prominent ones now, but I need to look. Will you allow me?"

Thank you! Casper finally feels in charge. She has to have a gruesome scope, and another IV, and more drama, but she gets to to make a decision. "I guess."

If there is a blockage, the doc will stretch it to make it disappear...

"What if it's not a stricture?" The silence is deafening.

"If it's not, it would be caused by Parkinson's. We can't treat that. If it is PD we would need to eventually look at feeding tubes. But I am not saying we are there now! We need to wait!"

We have already been there. That discussion is over. No feeding tubes, no pegs, no artificial anything except pain management. Lots of it.

"What about the fluid build-up?" He looks trapped. A doc without an answer he can jump on to make it better.

"We will have to wait for the results."

Yes, we will. And for Casper to come to terms. And for my heart to catch up. In a weird way we are already there. In another light years away. I know there are meds that will help. I know we will have help. I respect Casper's decisions. I know I will struggle to keep my promises but I will all the same. I know we have both seen enough of late stage PD to not want that to be us. And I know we will see this through. No matter what, no feeding tubes included.

"We will get you in as soon as we can. I will fix it if I can. " And that's the rub. You can't On the way home I think about how suction might help, and all the teaching I have sat through telling families that suction can do more harm then good. I call some of my nurse friends, and am reassured they will be there if we are on a quick path, and even if we are not. Casper and I talk about our next trip.  And we both avoid the topic in the middle: This is PD, and we have to face it if you are choking. And I have to be ready again.

I am not. But I am working on it. And we will be holding hands tonight in our sleep.