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.