Friday, February 26, 2016

#WYFF @ U.C. Davis Neurology Dept.

We have had a full week, visited wonderful friends and done some fun things....and here we are again with #WYFF falling on a "blech" type of day.

Woot! Sacramento - UC Davis - Neurology - fun times.

Seriously, we love our team and they love us. We're their fun patients. Other nurses say we have far too much fun at our end of the hallway.
Dr. Duffy and Michael's feet - note Michael holds
his left hand to keep it steady
But - there is something unsettling about the neurology department. On these days, we are smacked in the face with the reality that Michael has an incurable, degenerative, neurological disease - and it simply isn't going away.  For those playing the Boo Yay game with me - this is a Boo! ::snort::

Each neurologist asked us, "When are you going to Japan?"

"Um....still figuring THAT out. It won't be until after the VA determinations are done."

They have full confidence in our ability to figure out the health care picture and go to Japan. They encourage us not to let this disease define who we are or what we can do...but then it does, doesn't it? Just a bit. Mission boards and churches will certainly be interested in this when hiring.

In any event - here we are. Michael is a great sport and diligently preformed all the requested actions....he tapped fingers, followed her pen, tapped his leg, stomped hs feet, counted backwards, moved arms as requested, walked down a hall, heel-toed it (the worst for him), tried to maintain balance while she tugged and prodded, rested and relaxed....and she took notes and assigned numbers.

Checking balance
Many  of you have asked, "How is Michael doing?"  We don't want to blow off those who are praying for Michael - so "fine" isn't quite right - we've taken to saying, "There are good days and bad days." Which is true.   Dr. Duffy pressed. What are the good days like? What are the bad days like?  How many days are you unable to do what you want? How are your emotions?

Here's the thing - he IS doing better on Azilect. The internal, head to toe, jittery, shakes don't happen as often. The balance is still an issue. Chronic fatigue is a big issue. The external tremors are still present most days - some times worse than other times.  His movements are slow, his limbs stiff. Some days it's hard to recall words - but shoot he's still more articulate than the rest of us.  His voice is changing.- hasn't done that in 40 years. Little things like using a computer mouse and keyboard, playing the piano, working puzzles are difficult - but doable.  Some days he feels like a pin ball - bouncing off the walls in the Caboose. Today was an average day. Dr. Duffy said we could do better managing his symptoms. It's not all about doesn't want to lose dopamine or function. It doesn't come back.

Michael will begin a patch of a dopamine agonist in the upcoming week. Pills were discussed, but this will give a steady 24 hour dose and she thinks that will be better. Again, we find ourselves befuddled to willingly take meds which seem to have side-effects which mirror the symptoms they seek to alleviate or worse. They are aware Michael "doesn't do meds," but pressed the reasons it is time to add another med.

We had thought they would note the improvements on  Azilect - there are some fairly good days on it - and would tell us to continue taking it to see more improvement. In other words, we thought we rocked and things were going to improve more if we stayed the course. Evidently, we don't.  Or, we thought we'd ditch it and change to another med. Nope. We are keeping the Azilect and adding to it. 

We were told possible side effects of Azilect were hypertensive crisis - stroke and death-like symptoms.  The pharmacist spent 40 minutes explaining this and tried to get a different drug. Dr. Duffy says this is the lightest of the drugs she has for Parkinson's.  In any event, Michael has been careful, I've adjusted our diet and he's not experienced the possible side-effects.

The new possible side-effects include sleep-attacks, hallucinations and impulsive/compulsive actions. I'm to call if I observe anything like this, and he'll quit taking them. It's a bit freaky to consider a PILL can make a person a crazy gambler....we're praying to avoid all these side effects too.  I'm also believing the gospel is more powerful than the nutty drug. She warned us not to be alarmed if the Pharmacist asks for another consult.

This is a good time to slowly begin this drug. We will be here for another 4 - 5 weeks with VA appointments. We'll be able to see if sleep attacks are a problem before we start traveling around again. ::snort::  Dr. Duffy recommends Express Scripts and says she can handle most of Michael's care remotely - she is a big supporter of us getting on the road. LOL

Neurology days are a bit of a challenge. We find ourselves faced with what we've lost and with what is predicted for the future. I fight tears. I crack corny jokes and others laugh loudly - this is a good thing about the neurology department. LOL

These things we know! God is good. He controls our future. He knows what ministry He has left for us. We are pastors. It's simply who we are and what we do. That won't stop because titles and locations change.

Parkinson's isn't going away.
Michael has to take another med.
Sacramento traffic is horrid.

We have a great team of docs.
There are still new meds to try.
We get to spend much more time with Michael.
He laughs at my corny jokes.
I think he's cute as a perpetual slight drunk.
Slow rides home led to Papa Murphy's for dinner!
The stars are amazing out here.
God is still controlling our future.

#WYFF is sponsored by Fulltime Families. View more of our Friday exploits by clicking the #WYFF tab above. 


Unknown said...

De'Etta & Michael, i hate this. But thanks for the update. Prayers going up for you all. May God be glorified in it all.

Anonymous said...

Amen. I totally get this, my friend, much of it sounds parallel to my husband's experience over the past 8? 9? years. Hates doctors, hates meds. The same physical tests and questions at each appt. In real life, adjusting to compensate for diminished functions, overwhelming fatigue--or pain induced insomnia, difficulty walking, and what can best be described as excruciating phantom pains that no med can fix.

When my kids were little, one of my big house rules was "Do NOT touch the walls!!" and now he pinballs down hallway while trying to get his balance. It's my own private joke. ;)

A big concern of mine is that he may have some other serious medical problem that he/we will dismiss as a symptom, rather than something separate.

But God is good, all of the time. There have been countless blessings, and while a disease has changed our family, seeing Jesus at work has changed our family too.


Anonymous said...


I'm late reading this....... I just decided to go to certain folks' blog pages to see if I can catch up.

We just want to tell you that Dad/I cannot forget to pray for you both all the time. We really do understand much of what you are talking about. Well, at least, we sorta know how to pray......

Like the positive attitude your doctors have about you folks looking ahead to the time when you can step out etc.

our hearts are so with you and our prayers too.

love/prayers -- dad/mom t.