Tuesday, October 25, 2016

"Let's have this discussion now....." "No, thanks, I'd rather not!" ::snort::

Michael has a list of VA certified disabilities.

The VA is compensating him for these diagnosis' as they are all service-connected.

Love the check in Kiosks - Eugene 
I  We have felt odd TAKING the disability compensation - but with the dawning realization the pain Michael lives with is a direct result of burn pits, P tabs and/or Anthrax vaccines, I got angry. Then I prayed through the intensity of those feelings and realized, "They broke him." He wouldn't have the majority of these illnesses if they'd not insisted on the meds or sent him to areas with burn pits...and it is o.k. to be compensated for things we are told will be permanent and degenerative.

With the diagnosis of "Gulf War Illness" - a nebulous hope was born. Maybe the odd things Michael is experiencing can be attributed to THAT and not Parkinson's. It could happen. 

We have come to greatly appreciate Dr. C and the Motion Disorder Clinic at the VA clinic in Portland, OR. Dr C's goal is to ensure quality of life for his patients. We realize now the treatment Michael had been getting all focused on motor skills (tremors and balance) and were pharmaceutical in nature.  Dr. C takes a more holistic approach to treatment.

He referred Michael to a Physical Therapist.  She wanted to meet with him weekly. Instead,  Michael diligently works at home, and we drive to Eugene monthly. She continues to point out things we'd sort of noticed....Michael's muscles are stiffening, and he has to fight to keep PD from causing his body to close in on itself. He does a lot of stretching. She has pointed out the things she notes which are attributed to PD and told him her goal is to give him tools to help on the bad days and to slow the progress of the disease.

Roseburg has them too! 

Dr. C  also referred Michael to a Speech Therapist.  That seemed a bit out of place, but on 17 Oct we met with the speech therapist after physical therapy.  She asked a lot of questions, talked, observed and began to point out things Michael is experiencing in his speech which are classic Parkinson symptoms.  His voice is getting softer and hoarser, and he clears his throat often. She explained the effects Parkinson's has on the brain and muscles which control speaking and swallowing. As Michael's career involved much public speaking, she said it was normal we picked up on this early. We had asked a doc about this in 2012 - he said it was because Michael was intubated during surgery and it would go away. It didn't. He shared no other ideas when we asked again. I shared with Hilary (Speech Therapist)  Michael kept saying my hearing was going bad - and  I actually HAD MY HEARING checked. She had a good laugh and said often a spouse saying, "You need your hearing checked," is the first indication of PD affecting speech....but spouses don't usually go get their hearing checked. ::snort:: Of course, we didn't have the PD diagnosis when we were trying to figure out why I couldn't hear Michael.

She wanted to meet 2 - 3 times a week. We simply can't do that and be down here watching Mom G.  There are no "close" VA clinics to Crescent City. The one in Brookings is very limited in what they offer - mostly primary care clinics.  This means a 3 - 4 hour drive to each appointment from here. Sacramento would be 8 hours. We are stuck and not sure what can be done.  She gave Michael exercises to help various muscles improve muscle tone and to get his voice back to a middle range voice. All these therapists and doctors want to "have the discussion now," so we can prepare our thinking.  Hilary wanted us to realize  Michael could lose his voice - as in not be able to speak.  We'd never heard that possibility before. Since we are already seeing symptoms, we are going to work hard to slow the progress of PD. She assured him the VA has speech adaptation tools they will give him if he needs them.  She also mentioned there is a disconnect in a PD patient's brain - he doesn't realize his voice is soft (sounds loud to him) or that he's shuffling or his body is closing in - we will work on compensating. Well - that was CHEERY. I mentioned he's a preacher, and his voice is essential - she said they can give him his own personal amplifying system if we want it. We opted not to as he isn't preaching much these days.  What we loved about Hilary is she said, "We are going to FIGHT the progress of Parkinson's."

Realizing appointments 2 - 3x a week aren't feasible, the plan is to meet with her when we are in town for Physical therapy. Brookings will let us use "tele-health" on Mondays. We'll begin that soon too. Tele-health....we sit in front of a computer, she sits in front of a computer....the future in health care??????

Also on the 17th, Michael met with the respiratory clinic, and they changed his CPAP machine to the one the VA uses.

Dr. C and Hilary referred Michael to have a swallow test. We were able to do this in Roseburg (an hour closer than Eugene) today.  He has mentioned difficulty swallowing for several years, and the docs sort of glazed over and said, "Hmmm." Dr. C immediately sent him to speech therapy and she immediately sent him for this test.

I sat and watched the fluoroscope as he ate and drank various barium laced treats. This was one of those times you hope they figure out what is going on, but also hope it is really nothing. It was quite clear foods and liquids are getting stuck at the back of his mouth and on the little shelf by the epiglottis.  I am NOT into medical shows and *I* could tell things weren't going in the direction they are plumbed to go. I watched as he aspirated. It was obvious. He quit saying anything about his "swallowing problems" when the docs quit listening, and I'm thankful we have a new team who listens. Of course, they are listening for certain things and so clue in quicker than one would expect from a general doc. Michael has been having recurring bronchitis and occasional pneumonia every 4 - 6 weeks for the past FIVE YEARS!  We TOLD the docs this wasn't normal, but the standard answer was, "You're fine." As he neared retirement there seemed to be a sense that "older guys try to play the system to get disability as they retire." There is also a reluctance to diagnose issues which would cause one to be separated from service. This isn't a bad thing - it just is.  These factors are not in play with VA doctors. They have nothing to do with disability ratings or medical boards which would force one to retire.

 Now we know why Michael has recurring bronchitis and/or pneumonia.  He was aspirating during the test - it's fairly clear he does during the course of normal life.  They gave us some "thickening" junk to put in liquids and foods to try out. She said he doesn't have to use it if he doesn't want to at this point....but Hilary will be calling and wanting to meet with him for THIS - there are exercises to help here too.  She said she could tell the muscles for speech and swallowing (and the tongue) are uncoordinated. They aren't working well together to interpret the messages from his brain. We are to get some "nectar consistency" liquid for him to drink - or mix this thickening stuff into his water, soups, ICE CREAM.  We're not sure how to work in another weekly appointment....it's getting harder and harder to make it all work from down here.  She also wanted to "have the discussion now...."

We are realizing, as much as we'd hoped this was all part of Gulf War Illness, Parkinson's keeps being confirmed. We could talk theology here - but let's stick to medical - this is getting long.  It seems the VA was right - Michael has a host of issues and unless God heals him - they ain't going away.

So, for "Let's have this discussion now" and "we don't want you to hear this for the first time when it's time to act," here are the things we've had to discuss....just in case....in the last month or so.
  • Dr. C - Deep Brain Stimulation - google it, I'm not going there tonight!
  • Sandy -  Canes and Wheelchairs - not going there tonight either! 
  • Hilary - Losing speech ability, digital speech adaptive enhancements provided by the VA
  • Holly - Swallowing and aspirating issues are not going to be cured by these exercises - this will progress, we are slowing the progress of the disease. 
Frankly, I've decided I'd rather not have any further discussions on these issues for now. I'd rather pick daisies, count the leaves in the yard and eat M&Ms.....Or as Michael concisely frames it, "We'd rather enjoy denial a bit longer." ::snort:: Our medical team insists we not deny reality. A bit odd as the line had been, "You're in the early stages of this disease. You can do whatever you want. You have a good 10 - 15  years left."  If that is so - why NOT let us deny it all for another few years????? We like denial. We'd like to live by faith and not by what is seen.

There you have it - an update. This post is probably a major contributor to my case of Writer's Block.

We are fine. Nothing new - Michael has three or four degenerative diseases. We are simply learning how to live with all the new things which keep popping up. The neurologists keep stressing he's in the beginning of this  - but it sure feels like things are happening quicker than we'd like. We kept hoping the swallowing and voice and even some of the muscle things were all from the Gulf War Illness.....but we've been assured they are all part of Parkinson's and it's time for us to quit denying reality. It's time to "FIGHT THE PROGRESS OF PARKINSON'S."  

We appreciate your prayers as we try to figure out HOW to do this from HERE when our team is THERE.

*I apologize for the length of this post. I didn't want to have to write 10 or 15  "VA Appointment" posts to catch up! This one post just saved me hours of telling about specific appointments. ::snort::

PD = Parkinson's Disease 

Fall Drive - Redwood Highway (US 199)

Michael and I enjoyed our drive through the Redwoods this morning. The Redwood Highway is beautiful during every season - but the colors were beautiful today.  Redwoods and Firs stay green. However, the Maples, Madrones, Alders, and Ferns show off with yellow, orange and red foliage!  Our cameras were back in the trailer - but I grabbed some snaps with my phone. 

 It took us three hours to get to Roseburg. This was the closest location for Michael to have a barium swallow test. We'll post some thoughts on recent appointments later..... Michael stopped for lunch at Pita Pit - I'm a happy Herbivore.

With the tests completed we headed to Grants Pass. We had hoped to get the oil changed, but didn't want to wait two hours. We bought some groceries, snagged dinner at Applebees, and  headed for the woods.

Unfortunately, by the time we left town it was RAINING and DARK.  Another challenge in addition to the normal narrow, winding drive.  Michael pointed out all the usual spots for rock slides. It seems this is a big deal around here in the fall/winter.  We enjoyed the day to visit and process, we got more answers, the fall colors were gorgeous - the rain and dark drive through the  Redwoods a bit daunting.

We're home safe and sound. These guys are playing Farkle....I'm re-establishing  the discipline of blogging.

The rain on the roof of the Caboose is welcoming after a day running around in the rain. LOL

What a week and it's only Tuesday!!!!! YIKES!!!!

Monday, October 24, 2016

Rainy Monday

I woke up this morning to the sound of rain on the roof of the trailer! I love the sound.

I suspect it takes me back to childhood homes in Liberia, West Africa.

Via Google Images 
We stepped outside and realized the Caboose was sitting in a mini-lake. We were surrounded. Michael drove us all to the showers. We scouted around for higher ground. We may consider moving spots as the winter progresses.

Michael and Stacia went over to Mom G's to work on the "river room."  They report minimal progress. The boys and I stayed here to continue plodding through school.

By 3 p.m. the steady, continual, pounding on the roof by the rain was getting a tad bit old.  I wondered if one could go crazy listening to rain. I can't succumb to cabin fever on day 1.

The rain let up, the Chicken Divan (and Veggie Divan)  in the oven, Michael and I took Yuuki for a walk. Everything is fresh. All the dust is washed away. The noise stopped for a couple of hours. I can do this.

It's 11 p.m. and it's raining again - but I love the sound of rain on the roof of the Caboose.

Writer's Block

Why haven't I been blogging since 9 September?

Has the blog run its course?

Are there things too deep to share on a blog? Obviously. How does one committed to authenticity and transparency blog when walking through times which are simply too private to share?

The blog - then named Choosing Joy - was started as a way for the older girls to get to know Stacia. They left home 2 weeks after she was born. We discovered it was a great way for Michael to keep in touch with our daily happenings while he was deployed, and we were not. It was a fairly easy way for friends and family to "catch up" with us when they felt the urge to see what we were doing.  Michael loved having a family journal and had visions of us printing each volume (4 big books a year) and keeping them for the family.

Stacia is 11. She sees the girls monthly. Michael no longer deploys. Facebook produces so much noise most don't have time to read "blogs" any longer....and really don't miss posts when I don't blog.

I suppose it still has merit as a family journal - though I doubt it needs to be public to accomplish that goal. In fact, if it WERE private I'd feel much more freedom to share - and yet there ARE dear ones who tell me how much it means to connect in this way - we've shared life for eleven years together.

Our family joke used to be I wrote "so we could remember what we did when we became old and gray."  Now that Alzheimer's and  Parkinson's has touched our home  - it doesn't seem such a funny joke any longer. I SHOULD be writing - but I rebel. I don't want to write with an awareness I may forget or Michael may forget, or loved ones may forget if I stop writing....

I don't know why I'm not writing.  Quite possibly because it takes more  effort than I've wanted to exert to produce text and photos which are upbeat and pretty when life feels hard, hard, hard.

NOTHING new or terrible is happening - just hard things that linger on and don't resolve quickly - and really don't need to be shared online in a public forum. We've schooled. We've worked as we can. We've enjoyed campfires, hikes, visits and game nights. I am leading an online Bible study group which has become a lifeline for Christian community.

What's hard? Realizing none of the diagnosis which the VA gave Michael are going to go away. We  go to multiple appointments each month and each time we are both a bit bemused and surprised to realize they all say HE REALLY HAS ALL THESE DISEASES. WE  keep thinking it's some oddity and will eventually change. Each visit confirms this is the new norm.  New symptoms develop, and we learn what can be done or what can't be done to alleviate them. We don't want the blog to become an "organ recital."

We've come to realize there are no easy answers here in CA. We will be here as long as Mom G needs us, and we aren't sure how long that may be. It's hard to transition through these seasons with parents. We thought of renting or buying a home here in town, but we're not ready to do that. We still dream of traveling and living in Alaska if we can't live in Japan....

We're going to try to blog a bit more. Michael has said he'll help me "catch up."  I'll post link on the Courageous Joy Facebook page, if you don't follow the page, just check back and scroll down to find the newer posts posted on the older dates.  ::grin::

Tuesday, October 04, 2016

Instant Pot Spanish Rice (Vegan)

My Instant Pot is a life-saver in my tiny, RV kitchen!  This is yummy. Tweak the spices to your liking.

2 C brown rice
15 oz can of beans, or 1 bag freezer beans
1 can diced tomatoes
1 carrot, sliced
1 hote pepper, sliced
1/2 C roasted peppers or fresh red/green peppers
1/2 C  green olives (I used black)
2 tsp no- beef bouillon 
3 tsp chili powder
2 tspt garlic powder
2 tsp onion powder
1.5 tsp paprika
1 tsp cumin
3.25 C water

Put all ingredients in your Instant Pot, give it a good stir, seal the lid, set the pressure valve to seal. Click manual and set for 23 minutes. 

Click here for the original recipe. I'll be checking for more on her blog. For more yummy eats click the link above.  

Tuesday, September 20, 2016

Fall Nature Walk & Craft

Fall is closing in upon us here in Extreme Northern California (as opposed to the area from the Bay to Sacramento). We've begun school.  We have two high school students and one middle school student this year. How did THAT happen? All of them can read.  

Our "peopler" - Stacia - is falling into some new routines. She craves interaction; I sit and do history, science and lit with her most days. She is great at getting it all done independently when I'm running someone to a doctor or appointment. 

She spends the afternoon baking, she and I play a bit of basketball or go on  walks. We are working on carving out one or two afternoons a week for her to go over to Mom G's. They both miss that time together. We usually aren't done with school until 2:30 or 3:00 p.m. and by the time I run her over (bridge is still being constructed - long waits) and back it is cutting into dinner prep time. We are going to double up some days so she has freer time on at least one day of the week.....we'll keep playing with our responsibilities here and our responsibilities outside of the trailer as well. 

Today, the sun was bright and we enjoyed a nice nature hike. I showed Stacia the mountain above our RV Park. I don't think the boys have been up there yet. We took a little basket and she picked up various things to make a "fall craft." 

Our treasures

 I wasn't sure of her vision - but this looked positive....

A lovely fall centerpiece! 

I do LOVE the colors of fall. We spent quite a few years in locations that either had hot and HOTTER seasons (TX)  or cold and COLDER seasons (AK, Northern Japan) and the riot of colors is a joy this year. I'm storing up memories as I know fall is fleeting in Alaska and our hearts are wandering up the AlCan.

*Peopler is a term Stacia created to describe herself - it fits extroverts well. LOL 

Sunday, September 18, 2016

Krista's Ordination Service

We drove up to Oregon this weekend for a big event. We wouldn't miss being present when Krista took the next step in her goal to be a United States Air Force Chaplain.

We started the weekend by walking in the house and realizing Dad needed to go to the E.R. He spent our entire visit in the hospital  and he and Mom missed Krista's Ordination service - but they were there in heart and spirit.

Sherri took great video of the entire ceremony. We edited it and Mom and Dad have a copy - but it's far too long to make into a Youtube clip.....not sure where to shorten it.  Thanks to Arielle for taking photos. I was busy with Gemma duty. SOMEONE had to hold Bella.
Sherri, Will's wife, took lots of video for us
It was fun to have Will and Sherri, CoRielle, and BreZaak and Lorri all present to celebrate with us. Cory does look a bit unsure about being in such company?
Cory, Arielle's beloved

Nolan, Stacia & Alex
Pastor Gary, on the left, was my youth group pastor growing up. When I graduated from high school, my parents were still missionaries in the Philippines. I lived with Gary and his wife Jonielle until I began college.  He began by speaking, then he had Michael read some Scripture and speak, then Pastor John read a passage and spoke. 

Gary had me come up and Krista walked through an oath, the church agreed to be prayer support for her and we all gathered up front and prayed for and with her as she steps out in faith.
Krista, Gary, Me, Michael 

Krista is presented with her framed Ordination Certificate - which she'll need. 

Pastor John then asked Krista to preach her first sermon as an ordained minister. She preached about a couple of the churches from Revelation - and it was challenging. I was happy to see she will carry on my inability to speak in public without her hands. LOL

It was fun to see Ray and Becki in attendance as well. When Krista licensed after graduation from Bible College  she was given a ministry mentor. Becki is a friend from middle school - and Krista's ministry mentor. How cool is that. It was fun to connect again. 

Becki was Krista's mentor and MY friend from Middle School
BreZaak and Bella! 
Bre, Izaak and Bella!
What does this all mean? As Pastor Gary said, "We see God working. As a denomination we are declaring we see Him at work and are joining Him."  To be an Air Force Chaplain Krista needs to meet military standards of fitness and retainability.....she also has to have a MDiv degree, have  Pastoral Experience and be ordained for two years before being commissioned.  She is working on the MDiv and is nearing the 1/2 way mark.  She's had the experience, but it's not "post-ordination," she will be looking to serve a church as she finishes her degree. She is moving to VA to finish the last part of her degree in residence.  She's been to MEPS and been approved as to military standards. She's waiting to hear when she will be interviewed by a Wing Chaplain and pending his approval will be accepted into the Chaplain Candidate program. She's following Jesus along a path she never envisioned and it's mighty fun to watch.