Friday, June 26, 2015

Plot Twist - Again

Realizing drama is simply going to find us regardless of our efforts, Michael has lifted the talking ban and told me to "come clean."  Thank you for your prayers as retirement nears and we continue to search for answers. He really was the picture of health until 2012.

We believe God writes the story of each person's life. We've felt fairly certain for a few decades that we knew and were cooperating with His story - His plan for our lives (Ps 139:16).  We would  minister, as a family, to the military. We would then spend 10 - 15 years as missionaries (depending on when retirement came - most recently we've thought 15 years as missionaries).  We would spend 1 - 2 years living in an RV, visiting all our kids (we'd be 70 by then) and finally settle down.  In the past few years several of our children, as well as Michael and I, have felt God specifically call us back to Japan. We've studied a difficult language and culture. We've prayed. We planned a vision trip for mid-July 2015. We hoped to move to Japan in 2016. We'd live in the trailer (The Caboose) until all the pieces fell into place for a move to Japan. 

PLOT TWIST! It happens. The story isn't over. It's taking some unexpected turns. We trust the Writer of our story.

Six weeks ago a neurologist informed Michael he had "all" the symptoms of Parkinson's Disorder (PD) and gave him a preliminary diagnosis of PD. It looked to be stage 2 or 3.   He said it was pathological and not Essential Tremors - as the AF docs had said.

Our military doctor, whom we love, looked over the tests coming back and the doctor's notes and called to let us know with a diagnosis of Parkinson's Michael would need to go through a medical evaluation board and would not be retiring in August.  This was a low point as we had to cancel our July trip to Japan and thought we'd be active duty another 12 - 18 months. We have to be out of our house in August - you can see how our thinking had to change. We began to search for motor homes and quit pushing on retirement ceremony/VA claim.  

For six weeks we rested in the fact that this diagnosis explained every symptom Michael was having from tremors, balance impairment, stiffness - that elusive, unexplained pain in his side.  Of the ten symptoms of PD - Michael has 8 or 9. During this time they did a bone density scan. Osteoporosis is often seen paired with PD. That came back showing Osteopenia (between normal and Osteoporosis). Everything points to Parkinson's. We, obviously, were not happy with this plot twist. We were confused as we were convinced God was leading us to Japan and that seemed unlikely with PD...and Parkinson's is a not a fun condition to deal with. We determined to fight back with courageous joy - we have quite a few funny stories from this time which will stay in our family memory. We all waited for the final confirmation of the disease from the DAT scan.

We met with the neurologist yesterday.  He said and I QUOTE, "The DAT scan is normal. Let me look at you walk. I see no indication of Parkinson's." He seemed ready for us to leave.

We asked about all the symptoms which led him to the preliminary diagnosis. He said they could be associated with arthritis or lifestyle.

He said  Michael has Essential Tremors (ET).  Which we'd been told years ago - BUT he now shakes when he sleeps (and it's supposed to get better at rest).  It's head to toe. He prescribed a drug which may help the tremors if they are atypical Essential Tremors.

The neurologist loved me when I asked, "OK - you are explaining away most the symptoms and the tremors may be atypical ET - but what about the balance issues? The trouble walking?"

Um....His answer?

"I don't know. I told you I have no idea."

He did order an  "urgent MRI" on Michael's brain. He ran a complete thyroid screen - Michael had a bout with hyperthyroidism years ago, and this doesn't feel the same - but that would be an EASY answer. He's also checking liver and kidney functions and a B12 deficiency.  We will see him in two weeks.

And the plot twists AGAIN  -  we are RETIRING AGAIN IN 7 WEEKS.

We are woefully behind the timeline we need to be on for both the  retirement ceremony and the VA claim. In fact, we STILL have outstanding referrals so they may not let us begin the VA claim yet and he's not been allowed to have his final doctor's appointment with the military. We would love to say all is well - but  all is ODD right now.  Michael doesn't feel good. Something is simply not right. We would LOVE answers while we are still active duty - the VA will cover future care differently based on if it was diagnosed while he was active duty. Yet, we are planning as if we are retiring. If something turns up and retirement is postponed, we are going to have a big party on the 14th of August anyway. LOL

We are no longer looking for a motor home as we don't plan to drive around America until we reach our upper 60's or 70's. I was determined to make that dream a reality for Michael and that meant doing it now if he had Parkinson's and we couldn't go overseas.  We DO plan to move into our trailer, we will do some trips and live in it until we are sure nothing in our health would keep us from living overseas. We are going to study Japanese and wait for God to say, "NOW."

Through all this - Stacia kept saying, "Dad can't have Parkinson's, because GOD told us we were going to Japan."

As Michael told Vince, our denomination's Global Mission's Director, "God has a plan. We know it's a good plan. We have no idea what the plan will look like."

"For I know the plans that I have for you,' declares the LORD, 'plans for welfare and not for calamity to give you a future and a hope." Jeremiah 29:11 NASB.

 We determined years ago to be a family which would love courageously, follow God courageously, serve courageously... As we face this ongoing challenge and the many questions - we've decided to handle it with courageous joy (defiant joy even ::smirk::).

There is much I could say of the past weeks about symptoms, lessons learned, high points and low points - but perhaps this is enough.

"Be strong and courageous! Do not be afraid or discouraged. For the LORD your God is with you wherever you go." Joshua 1:9 NLT

Update 19 August 2015 - Neurologist #2 and #3 feel that Michael does not have essential tremors. They have currently given him a diagnosis of Parkinsonism. He is weaning off the meds the neurologist #1 put him on. The next step is to try Lepodova - a Parkinson's med. If he responds favorably to the meds he will be given a positive Parkinson Disease diagnosis. You can read more details here.  They told us, "Live your lives. We'll get through this together." They knew we were going to be traveling in an RV - so we still are. LOL  We are living this dream NOW - why wait until our 70's?

Let go my soul and trust in Him
The waves and wind still know His name....

7 comments:

Renee said...

Continued prayers for your family during this roller coaster ride

Renee said...

Be certain that ALL medical issues are documented in the AF medical files. VA will need all that for a disability rating. And have a personal copy of EVERYTHING before retirement! (that comes from dh) Be certain that Michael starts NOW with the VA for a disability rating.

Lisa Berry said...

Praying for you, Michael & your family that answers will come soon and everything you are to do will be made abundantly clear to you.

DeEtta @ Choosing Joy said...

Renee - THIS is our frustration. We started the claim 2 months ago and the VSO said to wait until we had a complete record ready to go - until all referrals had been followed through to conclusion. AND WE ARE STILL FOLLOWING THEM THROUGH and we are supposed to retire in 6.5 weeks. As of tomorrow, we will have missed the window to fast track our VA claim. The claim had to be submitted 4 - 6 months before official retirement date of 1 Nov. Supposedly there is a brain scan this week - but we've not heard WHEN....so I suspect next week....and each delay sinks us a bit further. I feel like there are a lot of discordant "pieces" flying around and if one will fit into place the others will follow. I pray.

Thanks for the prayers, Lisa.

Anonymous said...

SIS: Boy, we are sorry you and family are having to go thru all of this. All we know is to pray and often at that for you all, all 13 plus of you. Honey, we know Prayer is what is needed and so we can at least do a lot of that and we do. Tons of HUGS to you all! love/prayers - mom t.

Ginger Harrington said...

Praying for peace and health and retirement answers and...and... Blessings to you guys in a challenging time of shifting answers and directions. Your faith is an encouragement to many. Hugs my friend!

Stephanie said...

Praying for y'all! I've always thought of you as a courageous one and as someone who is such an awesome example of living the way He desires us all to live.