Thursday, September 03, 2015

Here We Go Again - PLOT TWIST TAKE 3

I will most likely edit this post - but here is the text of an email I sent to a few sister-friends this a.m. Michael said it would be simplest to just post it .

I realize we left you hanging after the neurologist appointment. We wanted to talk to the kids before I emailed or posted anything online so  there was no chance of them finding out family news online.

Anyway - we lost internet when we arrived at our campground. We're back now.

Our appt was 1.5 hours long. They listened. They asked for my input on questions where Michael wasn't sure or hadn't noticed problems. First he saw a "fellow" who did quite an exam and then he saw the neurologist  - who did the same exam. This was at UC Davis...then they brought in more to observe him walk etc. Upshot....she has diagnosed Michael as having Parkinson's Disease rather than essential tremors....based on the history and her exam she is confident in saying he appears to be in the early stages of Parkinson's Disease. She agreed with the base doc (and us) that if he had "atypical essential tremors" the beta blocker would have worked by now and that it is stupid to keep increasing the dosage. His resting heart rate is now 53. We are happy to cancel further appointments with neurologist #1.

She said the DAT SCAN does not always show changes early on and that PD is one where the doctor needs to make a clinical assessment. She noted his right arm doesn't swing when he walks, the tremor, the quiet voice (which is getting quieter), he sways when he gets up from sitting etc. She said the jitteriness he feels is not him being crazy - it's an internal tremor and the external tremors usually follow.

To confirm a diagnosis of PD she will start him on the Parkinson meds and if he responds, he has it. If not, it IS something else odd....and she said we will track it down. Much better response than, "I TOLD you - I don't know."

The complication came when she remembered he's on the beta blocker. A person doesn't willy-nilly stop this med.  They don't want to start another new drug while weaning him from the beta blocker. They are slowly weaning him off it. We will see her again in Nov, she will evaluate him again (looking to see if the symptoms are progressing) and then start him on levodopa.  I feel like we dodged the bullet before but this time it found it's target - and yet the treatment for ET simply isn't helping much - it's always good to have answers - even when they are answers we don't like much.

She said to continue on with life. She said there are new treatment options and we will get through this together. We are trying not to consider the implications too much just yet....we are focusing on adjusting to RETIREMENT first.... Michael sees the military doc on Tuesday to discuss the way forward as it impacts care and VA claim.
Let go my soul and trust in Him
The waves and wind still know His name....


Renee said...

Continued prayers.
Might need a new referral for November appt since at that time he'll no longer be active duty and as you know most all specialists require a referral from PCM.

Marcia C said...

So sorry to hear you are going through this. I'm sure it is very frustrating. Try to find something to take your mind off things as he weans off the beta blocker.

DeEtta @ Courageous Joy said...

Will be looking into that. He has an appointment Tuesday with the base doctor we love to discuss how to get the best care possible going forward.