Sometimes good news is Good News

B had his four month appointment with the movement disorder specialist (and I'll just call her Dr. Pinky from here on) Monday.  It was supposed to be a very long day; we had our appointment scheduled with Dr. Pinky, followed by an appointment to see the physical therapist, and lastly a meeting at the VA hospital with some people doing a PD study.  We scheduled them all in a row, mid-day, because the trip over to Seattle takes 3.5 hours one way and that makes for a long day when you're doing a turnaround. 

Dr. Pinky ended up running late, so we rescheduled the PD study, since it was a two hour intake appointment and they had no way to move us.  We're still participating, but we'll have to come back on another day.  We felt a little scrambled at having our plans mixed up so thoroughly, but the physical therapist was able to bump us down a bit and the PD study people were okay with rescheduling, so it worked out fine.

At our first appointment we found that B is progressing very slowly, and that's great news.  She did want to add a slow-release Sinemet for bedtime to prevent his early morning waking.  She verified that his quitting smoking might be the cause of the topsy turvy medication issues we've been having, and did say that some people found that nicotine did indeed have some effect on the absorption of PD meds.  She said that they had some patients that used nicotine patches for PD symptoms. 

It was really nice to have that observation validated.  So many medical personnel are very hung up on the evils of smoking, which I don't disagree with per se, but forget that above and beyond the physical activity of smoking those patients are getting a drug: nicotine, that seems to be working for them in ways they may not be able to put a finger on.  When those patients are also taking PD meds and have found a balance that works well for them, to pull one drug out of the teeter totter leaves it unbalanced on one side, and it can throw the whole process off.  We found that what we thought was the right med balance for B became wildly overdosed once we pulled the nicotine, and his on/off periods also seesawed drastically where they'd been fairly smooth before.  We came to the conclusion that the nicotine was somehow smoothing out and mediating the absorption of the PD meds.  Now we have to decide if we want to experiment with nicotine gum to mimic where he was at before, or if we want to leave it alone now that we have smoothed out somewhat.  That will be up to B.

She said he was doing very well, even though she saw him during his off period, right before a scheduled pill.  He has been having trouble with the low voice since he quit the cigarettes, and she feels that he should see a speech therapist.  I'm all for that, but I'm still not sure that this new development is just a new development in the PD and not just a side effect of eliminating the nicotine.  I still lean towards trying the gum to see if his voice comes back.  Regardless, we do have an appointment to see the speech therapist in four months when we come back for our recheck.  I have to say the low voice really disconcerts me and I haven't gotten used to it yet.  In our history, he has never had the low voice unless he gets really angry, so it's a cue for me.  It's going to take some getting used to if this is just a progressive symptom, as I'll have to rewire the way I think of that cue so that I'm not feeling so defensive.

We saw the physical therapist next.  She was a chirpy little thing, and I liked her.  She asked him about his 'funky walk', and I hoped he wouldn't take it the wrong way.  It turns out that since they work pretty closely with the Booth Gardner PD Center upstairs she sees a great deal of PD patients, and she's well versed in the process.  He told her he wasn't interested in 'exercises' per se, and so we worked on ways to stay active in the wintertime when we weren't able to get outside like we do in the summer months.  She did a complete exam and said that he was doing exceptionally well for being 13 years into the disease.  She also felt he was doing all the right things as far as staying active and keeping a good mental attitude.  She wants to touch bases with him again in perhaps a year from now to make sure he's still on track, but said he's the type of patient that will do very well, because he doesn't sit down and capitulate to not being able to do things. 

In the end, though we didn't spend much time at either appointment, we feel like we got a lot out of the trip.  This set of medical professionals actually work with us and listen to us, and have some concrete things we can do to make our lives easier.  We got out of Seattle earlier than we expected, and were even able to make a little side trip to Roslyn (where they filmed "Northern Exposure") on the way home.  It was great to find out that B's doing so well.  You can't beat good news. 

And I think we even found a new place to fish!  :-)

Learning curves

I don't know if I'll ever understand why life has to come with such a steep learning curve.  Perhaps I'm just a slow learner.  Maybe it's just because I'm more like our new kitten:  growling and snarling even as I tuck into a savory plate of food:  it's good, but I'm so afraid that someone's about to swoop in and take it away from me. 

The truth is, life changes and either we grow and change with it or we get left behind.  Everything changes.  Nothing stays the same.  The old ways that we knew, the patterns that we had found that worked, may not work forever.  And so it is in a family.

The children are nearly grown.  The girl has been away to college for a year and is now home for the summer.  She's been the independent one, always on the go, but now she's had foot surgery and is pretty close to completely dependent on the family.  The boy has just completed his Junior year in high school and is in his end run coming up on Senior year.  He's driving and he has a summer job, but he also has a new batch of friends that he's running with.  Always the quiet and shy one, now he's 6'4" and the leader of his pack. 

We thought we had this parenting thing down pat.  After all, we'd been doing this for over 19 years. You know, you feed out the rope, they run with it as far as it stretches, they grow, they learn, they fall down, we reel em back in and send them back out to run again.  It's been working for this long.  We got the girl off to college and she was doing really well.  We figured all we had to do was get the boy there too and we'd have it made.  We didn't bank on the changes that have to happen in order for that to take place.

POINT OF CONTENTION #1:  "I'm an adult."
So now we have one 19-almost-20 and one 17-almost-18.  I'm willing to concede that they're adults, or nearly there.  I trust them to run to the store with my debit card.  They get to come and go without a curfew.  They have their own bank accounts and go solo to their appointments (or at least the non-important ones).  They have cars and we trust them to come and go as they need to.

POINT OF CONTENTION #2:  "I still want to be a kid."
They still fight like five year olds and expect Mom and Dad to mediate.   They make horrendous messes and gripe and complain about having to clean them up.  Getting anyone to do household chores, even the ones they used to do, is like moving a mountain with a teaspoon.  All of a sudden they have selective hearing.  Unless they need gas money.  Or money to go to the movies.  Or to go to Starbucks.  (insert monetary request here: "I need_______________")

POINT OF CONTENTION #3:  "I think this should be MY house."
This was the straw that broke the camel's back.  All of a sudden, there are boys that come over and stay for days and days and days.  They eat everything in the house like a pack of locusts.  They take over the dining room to play Magic (the card game).  They take over the living room TV.  They play music in the bedroom with the door open so loud that you can't hear anything else in the rest of the house.  They come and go in and out the doors, in and out, in and out, until it feels like Grand Central Station.  You can't have a conversation without them butting in.  And God forbid you try to read a book or relax.  There's no place to do it.  We have found ourselves chased out of our own house, coming in only to cook dinner and use the bathroom.  Where the girl was gone too much, the boy stays home.  He and his whole crew.  There are dishes all over the place and the F-bomb flies rampant.  There are people wandering around the house at 3 a.m. because they don't sleep on a regular schedule, since it's summertime and they are teenagers.  I can't plan on dinner, because I can't afford to feed three or four extra mouths, and I surely can't make the nice little steaks we have in the freezer waiting for it to be just us four family members. 
And the worst thing is that it's not breaking the house rules, per se, because we never anticipated these problems in order to make rules about them.  Rules?  We GOT no steenkin' rules, amigo!

It's taking its toll on us, on our relationship.  Neither one of us knows how to fix it.  We know it's broken, and rampantly spiraling out of control.  We know in the abstract how we need to handle it- we need to stand up to the kids and set some new rules, ones that work for almost-adults living in limbo before we push them out of the nest.  But both of us are paralyzed, not sure how to do it.  So we grow ever more frustrated and snappy with each other.  To top it off, B quit smoking about two months ago, so he doesn't go out into his 'quiet zone' either, since it reminds him of smoking.  So we sit on our hands, seething, looking at each other and wondering when it will all end.

I miss my husband.  I miss my family.  I miss my quiet and the hour or so of wind down time after work that we used to have.  We see the family counselor on Monday, B and I, hoping he can help us draw some lines in the sand for this new family dynamic.  I sure hope he has a whole bunch of new tools for us to add to our toolbox before we all splinter to the four winds.  Or before we pull our hair out.  Or worse, before frustration makes someone say something they can't take back.

Bits of sunshine through the clouds

He's amazing.  

This is the deck, in progress.  Started on Saturday, nearly finished.  Maybe another guy would have had it done quicker, but no one can do it nicer.  I'm still blown away by what he CAN do.  There is no 'can't' in this man's vocabulary.  I still push him to let me know when he's getting too tired, and he's doing better about that, but he still gets out there and does things.

Amazing things.  

My beautiful home, my wonderful life... all because of this man.  He's tired of me telling him how much I love and appreciate the incredible things he does, so I'm gonna say it here.  :-)

We're a darn good team, if I do say so myself.  More pics when it's finished.

Tough topics, part 1

I've had a lot of stuff milling around in my head during the time that I've been gone from blogging.  Deep thoughts (and not the Jack Handey type).  I started to say that it's because it's been an eventful year, but then again, it's been eventful right from the get-go.  I guess it's been an eventful life.  Sometimes I feel like my life has been spent stumbling from one catastrophe to the next.  And yet I learn these things along the way, so I can't feel like they've all been in vain.  I believe God places challenges in places where he wants us to stretch.

And that brings me to tough topic #1.

Faith/religion/God/"Higher Power"/whatever you choose to call it

I had the occasion to drive to town last night to pick up our takeout dinner.  Everyone else was tired (hence the takeout), and couldn't get excited over one more trip back and forth in the car, so I ran by myself.  It doesn't happen very often, and I usually make the most of it by putting the radio on the channels I like, and turning it up as loud as I want it (which, since I'm DEAF, would make your ears bleed).  :-)  Besides, I like to sing, and *I* don't want to hear myself, either!  As I was flipping through, I hit the Christian music station, and there was a song on I liked, and then another.

I got to thinking about how many Christian music CDs I had, and how I didn't recognize much that was on the radio anymore.  I used to buy the new WOW cd of the year each time it came out, and it occurred to me how long it had been since I listened to that kind of music.  That made me a little bit sad.  The truth is, I listen to whatever everyone else wants to hear.  It's been a long time since I listened to what I wanted to hear.  We play some of my music at home, but it's intermingled with a thousand-plus songlist on random with B's music.  When we're in the car, since he's nearly always driving, we listen to the stations that are somewhere in the middle ground, that we both agree on.  If 50% of the music is middle ground, that means that I'm missing at least a quarter of what makes me, me.  (And so is he, as well.)

Lest you think this is a husband-bashing post, please let me say that it emphatically is NOT.  But that little twenty minute drive made something clearer to me.  If the songs on the Christian radio make me want to cry, I know that I'm hungry.  There's something inside of me that cries out that I'm still not whole... there's still a whole quarter of me missing.  It's not the music.  That's just the window in.  I'm missing the Father.  I'm grieving, and I've been tuning that feeling down for so long that it shocked me when I allowed the volume to come up.

B's not overly religious.  We have spent the last year halfheartedly, sporadically, doing church visits, to see if we can find a place to light.  We feel like the three bears:  Too big, too small, too contemporary, too stodgy, too 'produced'.  There just doesn't seem to be a place where we fit in.  I like contemporary services and music; he comes from organ music and thunder in the pulpit.  And underneath it all, I get the feeling that he's only going because of me.  But he's trying, God bless his heart.

I know that it's hard for him; that he's angry with God.  I'd be angry too - he's had his future taken away from him, and it can't be easy to make peace with.  What kind of loving God would do such a thing?  B's seen it firsthand... he knows how cruel the disease is, and he's afraid, and angry.  And I can't blame him.

I guess I'm just from the other side of the fence.  The one thing that sustained me through the dark, dark times in my life was faith.  I really never had a father.  I remember going in to a church for the first time in my adult life with my couple-month old baby in her baby carrier and my Goodwill clothes, sitting in the back row and trying not to be seen, because I had bruises on me that I didn't want anyone to see and I for heaven's sake didn't want anyone I knew to recognize me there.   The pastor must have had a psychic moment, because I knew he must be talking straight to me.  The sermon that day was about forgiveness, and the piece that sticks with me nearly twenty years later is what he said:  The people called out to God for forgiveness, and they cried out to him "Abba.... father."  And it broke...my....heart.  There I was sitting there like some big goose, crying into a burp cloth, because I finally had heard what I needed to know: there was Someone out there, and He loved me, and I was going to be okay.  And from that point on, as hard as it got (and believe me, it got a lot harder before it got better), when it was really bad I held on to that vision.  Someday, I was going to leave this world and go to be with my Father, who would welcome me.  In the hardest moments, I envisioned that picture - finally getting to lie my head on His lap, lying my burdens down, and closing my eyes.  Feeling that hand on my head - the one that says "Everything is going to be okay."  As broken as I ever was, I knew God could heal me.

I never did go to church much.  My husband didn't believe in it, and I only got to escape every so often.   There was no other place that I ever felt so peaceful, though.  It truly got me through.

And then, after the years of hoping and praying and waiting... it happened.  I got through.  And now we're in this wonderful place of peace and joy and happiness that the 20 year old me could never have imagined.  I have the most incredible partner in the world.  I would do anything at all for him.  But as with any relationship, we've had to make compromises.  As compatible as we are, we aren't clones, and we come to this union with different needs and different traditions.  Mine happens to include that relationship with God.  I'm not 100% sure what his includes in that respect.  We've talked very little about faith, but enough for me to get the gist that it's not as important to him as it is to me.  It has been enough for me to know that he will go with me, be involved in church with me, if we find someplace we both are comfortable at.  So far we've not found that.

I think the worst part is that I have such a hard time talking to him about that.  For heaven's sakes -  we can converse about the worst, most embarrassing and personal medical things in the world, but we can't seem to have a conversation about faith.  And that's disturbing.  I think the two biggest elephants in our room are late stage Parkinson's and belief in God.  For some reason there's just a wall there that prevents real talk about where we are, what we expect, and how we can make our two approaches merge.

So, that leaves me feeling dirty every time I bring up my faith.  I don't listen to Christian music.  I waffle every Sunday morning, wondering if I should suggest trying another church when I know all he wants is to sleep in.  At holiday meals, we say "Grace... ha ha!" when we should be saying grace... because few in my family believe, and those who do don't want to upset the ones who don't.  In a way, I feel like I'm having an affair with God.

It must be an affair.  It feels good.  I feel loved and validated in my faith.  It's something that has to stay hidden, because outside people would disapprove.  And it's something I have to do without my husband.

Sometimes I feel like saying "Who do you think will be around to maintain my sanity when you are gone?"  What happens when I'm crying the same anguish that Natalie Grant is singing -
Who told us we'd be rescued
What has changed and
Why should we be saved from nightmares
We're asking why this happens to us
Who have died to live, it's unfair...

The answer, of course is right there too:

This is what it means to be held
How it feels, when the sacred is torn from your life and you survive
This is what it is to be loved and to know
That the promise was that when everything fell, we'd be held.

And it makes me grieve, because this life is too damn short, and if we are to believe in life after this one, I want him there with me as well.  That life, not this one, will be our time.  Peace, not Parkinson's.  But how, without him?  I'm selfish.  I want it to be his faith as well.  I want to know we're going to be together.  Most of all, I want to lie my head on  my Father's knee and look across to see B's on the other knee.  I want that peace for him, and I want to come back home.

Aging out of our fun bracket

SO a funny thing happened to us on the way to midlife... stop me if you've heard this one before.

I read a lot.  Possibly not a surprise to anyone who knows me personally.  Anyhow, I like Slate and Salon and MSN Lifestyle, and while the Beauty and Fashion articles almost never pertain to me anymore, I like to keep up on the Family and Life type bits.  That's me - always trying to enrich my life!  But lately, I've noticed a funny thing.  All those pithy little articles that used to feel so relevant, about dating and mating and such, don't really fit anymore.  Kind of like a pair of jeans that I used to be able to squeeze into, there's just a whole lot more of me than can be stuffed into those categories these days. 

The same thing is happening when I go to look at the Family articles.  Everything out there seems to be about parenting small children.  Do children cease to exist when they turn teenagers?  Judging by the constant mess and raucous music (music??) emanating from the house whenever they are around, I'm pretty certain that I can verify the existence of Teenus spasticus, the Common Household Teenager.  But you couldn't prove that by the rest of the mainstream world.

Oh, sure... there are other articles out there.  Yeah, THOSE ones.  The ones with the smiling white haired people.  The ones that get the pop-up sidebars for bladder control drugs and Jazzy scooters.  But here's the rub - we don't exactly fit there either.  I'm going on record to say that I don't have grandkids, don't own an RV, and have never been to Florida.  And I for heavensakes have never 'swayed to the soothing sounds of Lawrence Welk', except when my great-grandpa took the TV set hostage and forced me to retreat behind the big living room sofa with a Trixie Belden novel and a stolen bag of chocolate chips from Grandma's pantry. 

So where are the articles, MSN?  You give me "Five ways to a Hot Date Night", but at least two revolve around getting a good babysitter, and the other two don't take OUR early bedtime into the mix!  And honestly?  Your "Outdoor Date Ideas" are a bit rough on my Parkie, as well as my finicky gallbladder.  An outdoor pub crawl?  Yep, I'd have the crawling thing pretty well down pat, except there's nothing in your instruction book that covers how to get your teenagers to withdraw cash from the emergency account for bail, and THEN GET THEM TO STOP LAUGHING, DAMMIT. 

So, I guess for now, since I'm not into Bingo and I don't think they'll let us back into the bar after the last time we were making out around the pool table, we'll just have to stick with "Home and Decor".  After all, paint choices are pretty stimulating, right?

UPDATE:  After this post, I found just what I was looking for:  http://www.notreadyforgrannypanties.com.  Too funny!  I dig it.

Hey, we're "famous"!

Mary, over at Life With Shaky, is running an interview series with Parkinson's couples, and we have been asked to contribute.  See part I this week, and the conclusion next week.  I'm eager to see what other couples are experiencing, and what wisdom they have to share.  It was nice to be able to get a lot of those questions out in the open, as well.  There was a lot of dialogue opened up by doing this interview together, B and I.

The elephant has been unmasked.  Now what we do with it there in the living room is a question that remains to be seen.

Oops...almost forgot!

Almost forgot the good part!  I'm a 'weiner'!  Second place (which is really weird, cause the ribbon is white.  And their first place winner was a red ribbon...bizarre), $100 cash prize!  AND they want to see more of my work!  Wooot!

Recovery

And with the turn of the new year, this is a blog about Parkinson's again.  Or at least a post about coping within our own limitations. 

The last hurrah of the year has been sincerely and truly crazy.  We had one kid home from college for the three week break, one set of kids home over Christmas (the holiday weekend), and another home for the week between Christmas and New Years.  The company was great, but neither of us had time for any personal downtime for three weeks.  B has his garage, but that's another story.  It's hard to hide when you're the host of the party. 

They say that 'good' stress is just as bad as 'bad' stress.   For example, getting married or getting a promotion is 'good' stress, and 'bad stress is what we'd normally think of as stress:  losing a job, someone dying, a serious illness, etc.  They all add together to make the haystack on the camel's back.  Sometimes we cope pretty well.  Other times, it just takes that one little straw to break the camel.  PD has a tendency to seriously reduce the size of the potential haystack.  We know that, so we figured we were only taking on what we could feasibly handle:  the visits from the kids, which were self limiting.

We didn't figure on the little things that cropped up.  The art show.  The college kid's tagalong (and very persisitent) toxic boyfriend.  The ticket the girls got on the night they went out visiting friends late at night.  The Christmas project we forgot we had to finish. 

Today we finished the last of the outstanding obligations:  taking the college kid back home to her dorm.  It's an all-day project, and when it wasa done, we were relieved.  Not happy that she was gone, mind you, but relieved that we were going back to normal.  Since we went early and were done by shortly after one, we thought about going car shopping in the nearest big city, a couple hours away, but by the time we hit the cutoff for the freeway where we had to turn to head there, it was evident that we weren't going to make it.  He was exhausted and so was I.  We made it back to town, sat at the restaurant and had late lunch/early dinner, and went home.  It was too late for a nap, but too early for bed. 

I knew when we got home what was going on.  He was really wobbly and terribly fatigued.  He retreated to his garage and I let him be, knowing that he needed some defrag time playing sudoku in the quiet.  I, too, needed some defrag time.  I cleaned the girl's room and picked up the remainder of the house, started some laundry and dishes, and sat down to craft.  After awhile, I felt better, like my brain was finally coming back to me.

Unlucky for B, his recovery isn't that easy.  He went to bed early tonight, and is absolutely wiped out.  He was this way the last couple of days, but hasn't wanted to slow down.  But the PD demands its due.  He can deny it for a time, but in the end, it always gets its way.  He will sleep nearly ten hours tonight, since it's a work night and we have to get up, as he slept last night, and nearly twelve the night before.  It's hard for me to imagine that it takes so much to catch up, but it always does.  Who knows how long it will take this time, after all this stress?  Outside of the divorce, this is probably the most stress he's had in three years or so.  Now that our lives are quiet, he isn't used to the constant stress anymore, and so it really wallops him. 

So here I sit in the darkness in the living room, reading a book and taking a second to catch up myself.  I will probably be here for several more nights, waiting for his body to catch up with itself.  We can't do this again.  We are going to make some changes (most importantly to the house rules, for the college kid who thinks its okay to come home at 3 a.m. and wake the whole house up) and not let this 'perfect storm' of stress catch us out again.  For now, I watch him sleep, in the hopes that soon, we will be able to connect again.