Parkinson's Update

Some have read between the lines and sensed another plot adjustment in our ongoing saga.

Several months ago, the therapists Michael was referred to by the Motion Disorder Clinic in Portland, recommended they see him weekly and/or 2-3x a week. We explained that was impossible. We settled on monthly. Before our cruise the speech/swallowing therapist made clear she felt we were wasting a window of potential in fighting the progression of Michael's Parkinson's symptoms.  We understood, but saw no way out of our situation. We were needed in Crescent City.

I reported Michael's week at the VA last week - 5 appointments in 4 days. It was noted  some muscle tone was taking an unwanted turn. The physical therapist said she would be much happier to see Michael weekly. She feels he would benefit more at this point from more frequent torture in person.

 The  first of two  appointments with the speech therapist this week consisted of her spending 45 minutes explaining to us exactly WHY she felt so strongly Michael should be seen 2 - 3x a week and why she felt we needed to leave CA and stay in OR. He is already aspirating and having trouble with swallowing. This will progress. We can try to control the speed of progression with intensive therapy. If we wait 6 months, a year or two....well pureed food doesn't sound desirable...and once muscle tone or nerve function is lost - it's not replaced. She was very blunt and pointed. She told us we needed to think about MICHAEL and quit putting everyone else's needs first.

She asked, "Why is this decision so hard for you?"

We explained our family world view. We serve. Michael's career was about putting others above self. He does the same as a father, son, and husband - a good one. It's not natural to begin to put yourself first in all decisions.

She finally pulled out the big guns - one several of these VA docs have pulled in the past year. "Chaplain, if someone came into your office and had a degenerative disease, was showing increasing symptoms and had a window to try to slow the progression....but was taking care of his mother...and still had children at home, was fairly young himself and was risking losing function that would not be regained,  what would you advise?"

Blech.

Via Google Images

Michael puts it in river terms. Once the bank erodes, you'll never get the dirt back. By agreeing to this season of intense therapy we are reinforcing the remaining bank.....if we continue to ignore their recommendations, we will continue to watch the bank erode. Michael is too young for us to willingly watch the bank erode without a fight!

We aren't sure how this is all going to work out, but we know we have to make the most of this window. We have to do what the docs have been encouraging. We have to make Michael's health our priority.

What this looks like in December is we're all up here in Oregon. Mom G is staying with Michael's sister.  We are busy with therapy (and  will only get busier), we plan to go visit with Mom G during the days. We have a wedding and Christmas. We're figuring this out as we go.

We have agreed we need to make a season of intensive therapy our priority right now.

We are currently in a county park. We are only allowed to stay here 14 days every 30 days. We are not finding a good spot for an extended stay, but we'll keep looking and we are set up to be able to live on the side of a road if need be for 16 days out of the month.😉  We leave this park on the 10th and are looking at local options.

Settling in to the Season

After church Stacia and I had lunch with my parents, Lorri and CoRielle.  Dad went home, CoRielle went wedding shopping, Stacia and I took Mom and Lorri with us to Target. We had a few more "move in" items to take care of.....I'm looking for a basket/box/crate/something for the front end for shoes. I bought an under the bed storage thing, but I don't like the way it looks and will take it back and keep searching. We also bought a cartload of baking supplies for our upcoming wedding baking.  Christmas decorations and a new comforter set rounded out the shopping. I just can't live with ALL brown.  I think this works with the brown swirly window coverings....

We trimmed our "LIVE (as in rooted) tree,"  played with window clings and hung our little thrift store hats. LOL 

Need to find a candle...left the big front window blank 

THEN, we cuddled up on the couch with popcorn and watched Gilmore Girls until 1:30 a.m. We're done with Season 1.  We aren't overly fond of the "kissing parts," but we are enjoying it so far.  It was fun to be able to watch chick flicks.

Michael and the boys are BUSY down south and will be back tomorrow night.

Girl Time

Last night Krista and CoRielle dropped by the RV.  Stacia went home early with Krista. They sent me this photo. Can you believe such a big, full tree for $20? Stacia had a blast decorating. 

Michael and CoRielle talked through the upcoming wedding ceremony.

This morning Arielle introduced Stacia to the world of janitors as they cleaned a local church. They also did a few wedding errands. While they were out, Krista made buckeyes and then she and Stacia went to their church's cookie exchange.

Michael and I had a wonderful lunch with his sister. We stopped by her house to pick up Mom G's car. Michael and the boys are running down to CA to pick up a few things for Mom and be sure the house  (and a neighbor's house we watch) are ready for the weeks we'll be up here.

Stacia and I drove around and looked at Christmas lights. 

Lots of friends have been surprised I've never seen a Gilmore Girls episode. Stacia and I are spending our quiet nights while the boys are gone watching Gilmore Girls. ::wink::

Bearded Gherkin

Beards are a serious matter in this family. The elder Gherkin males have grown them....which led to Nolan growing a "wow" beard at a young age. He ALWAYS passes for much older than his age. Alex is 14. He has been alternating between clean shaven - Duck Dynasty...

Today, Alex said he was going to go shave his beard....and I had a sudden realization.

  

"Alex, do you know how to trim your beard?" 

"Um, Nooo." 

"Would you like to trim it, rather than shave it all the way off." 

Yes, he would. 

Michael showed him the finer points and turned him loose. He's newly shorn and will be spiffy for the wedding. 

For more #WYFF (Where's Your Feet Friday) entries click the tab above. 

Errands in a 38 ft Motor Home

Michael's  fifth and final appointment of the week at the Eugene VA Clinic. We really like his care team and this clinic. We were asked again if we'd acted on recommendation - we will, we will.

Michael is trying to do a few repairs.  We knew the drain in the bathroom was showing some rust. It is also leaking a bit. He bought a drain and it had an overflow and won't work. He's been looking all over town to find the drain that WILL work. We also needed to fill our propane tank - and it's attached to the motor home.  Appointments were over at 0900. We were relieved to have more time in Eugene, where we have a better chance of finding the parts we need. Off we went to 1. fill the tank and 2. check out a couple of RV parks as we can only stay here 14 days.

Doesn't everyone take along their Christmas tree in the kitchen sink when they run errands????

 We filled the propane tank, weighed the motor home now that we have everything in it, stopped and talked to the owners at a local RV park, I called several others while Michael ran into RV Supply, we also went to Camping World - neither place had the drain we need. He did get a new water filter for the kitchen sink. We were hoping it would increase the water pressure. It didn't, but the water tastes wonderful.

The kids made dinner.

They settled in to stream a Netflix flick. The new TV is wonderful. While they did this Michael and I hung the remaining photos et al. YES - I'm a military spouse at heart - you move; you organize and you hang the photos quickly. Day 5 and we're all settled, pictures hung....now we can work on the modifications and repairs.

Loving the living area

We found the kids relaxing when we finished..... 

Played Farkle - I won in my sleep again. Alex won the second game. 

We're ending the day with books....and plans for tomorrow, the first day without any appointments at the VA clinic.

Whacky Wednesday

It turned out to be an odd day.

Michael's physical therapist forgot her i.d.  We showed up at 0830 and she was late. She had another gal "stretch" Michael. Oh.my.pretzel.loving.soul!  I've never watched such a thing. She had him twisted in the oddest ways - and was pushing with all her weight against him.  Sandy showed up a half an hour late and both of them continued  - tossing ideas here and there for new exercises. They noted Michael's muscle tone is starting to slip - and that gave all increased vigor. They pushed him to the limit and in 45 minutes his balance was suffering and his tremors were manifesting. The new lady said, "That's good, that's how you want him to be at the end of a session."  It was 15 min BEFORE the end of the session - and Sandy hadn't pushed this hard before - but it was a good session.

Michael's next session was with the "speech therapist." Hillary's first question had to do with recommendations she had made  before our cruise. We had decided not to follow through - she pushed hard to make her point and we got to move a bit more out of denial and into the reality of what Michael needs to be fighting.  Eventually, she moved on to the exercises to strengthen his muscles for swallowing and speaking. ::wink::

We came back to our campground. I've decided to be a bit more careful in blogging and not share where we are parked until we leave.   All that to say, if you're local, please don't mention the campground we're at online. There was a man at our campground who attempted to assault THREE different women, throughout the day....and was apprehended and HELD until the police could show up by  our hero Campground host. We were clueless until we saw 5 police cars, guns, clothes strewn everywhere as we drove out of the campground.

We searched for a notary.

We realized we  have OPTIONS for dinner and everyone wanted Panda Express. Nolan's "fortune" cracked us up.

Gpa Paul had challenged the kids. "The next time we play Farkle, I'm going to win!" We headed over for ONE game of Farkle. Nolan won.

Back at the motor home we hung pictures - or stuck pictures to the wall. Command Velcro strips are AMAZING.

Am I the only one surprised to find this is the last day of November?

A Momentous Meeting

Day two of the week of the doctors. ::snort:: BreAnne called and asked if Nolan and Stacia could come with her to the dentist and play with Bella. Bella knows them as they spent the time on our cruise at BreZaak's. Michael went to his appointments. Alex and I stayed at the motor home and continued stowing things away. 

This enabled him to have the first Japanese lesson.....Michael came home. Bre and the kids arrived home. Nolan had his lesson and Michael, Bre, Bella and I went for lunch. 

Oh, my heart....so much cuteness

Bre and Bella are fun lunch dates

Mom G has been staying at Michael's sister's since we left on our cruise. We miss her. We'd not seen her as we have been crazy clearing and cleaning the trailer and moving into the motor home - then the appointments began. Our plan had been to get the trailer and van to a consignment lot before we left on the Thursday to go back to CA.

I checked with her and she said she'd be home all day for the next few days. We thought it would be the perfect opportunity for Bella to meet her Great Grandmother!

BreAnne, Bella and Great Grandma Mary Jean 

As we visited, Mom G asked how Michael's appointments were going. I noted they always want to schedule more.  She mentioned doing something on Saturday and I reminded her we were set to go home after Michael's appointment on Thursday. She said, "We can stay as long as you need us too." I asked about the possibility of staying until after the wedding and that seemed good to her. Rebecca agreed, so we are not going home on Thursday. That's a relief as it's taking longer to get the trailer/van taken care of than we thought (our titles are MIA and we have to send for them from Alaska...) and we are tired. Staying here this extra week will allow the kids to get a solid week of school in, us to "live" in the motor home for a bit of time before it moves again, give Michael time to get some repairs done, bake cookies for the wedding, AND allow us to be here to help CoRielle with anything that comes up.