Progress Lost

So, we went away to Florida to visit my in-laws for just over a week.  Overall we had a fabulous vacation.  I had a chance to relax and even got to read 3 books while I was away (usually takes me a month to finish one!).  The girls and I enjoyed relaxing days by the pool with my mother-in-law while Tim enjoyed catching up with his dad.  We spent a wonderful day at the Palm Beach Zoo, went out for some great dinners, and just really appreciated the time together as a family.

The reason I say "overall" is because there was some backtracking as far as the progress I was seeing with Tim before going on vacation.  The Tuesday before we left, we stopped his Seroquel as this med was prescribed to calm him down back when he went on Lamictal (the med that made him aggressive).  Once Keppra was out of his system, and we were seeing that he was much calmer, his neuropsychiatrist said we could try taking him off.  At home, we hadn't seen any temper flares for quite some time. By Friday in Florida, we were seeing some temper flares so I put him back on the Seroquel.  We still continued to see some temper flares while we were there and the day of traveling home was really stressful.

We have always loved to travel and I am one of those rare people who has never minded airports or traveling by airplane.  I don't think I can really say that anymore after that day or even the day that we traveled down.  In the past, delays in flights were never that big of a deal.  We always bring plenty to do so a little extra time waiting shouldn't be a big deal.  Well, when you have a husband who quite literally cannot sit still and you have the constant worry about him either completely wandering off or walking into places he shouldn't be, it makes those delays (and even just the normal time you sit in an airport) highly stressful!  On the trip down, it wasn't as bad as he was still pretty easy going about it.  We were able to just ask him to stay with us or give him some boundaries to stay within.  But the trip back, any time we asked him to stay with us and not wander off, his temper would flare and he would end up yelling in my face as people stared at us.  The worst of this being in the security line.  I was a little afraid we were going to be kicked out of the airport!

I was hoping that once we got home and back into familiar territory, he would calm down and we'd get back to where we were before traveling.  However, he continued to stay tense and on edge.  We arrived home on Friday.  On Sunday, Tim myself and my mom went out to dinner (both of the girls were at friends' houses).  It was such an incredibly tense experience!  He couldn't sit still the whole dinner, shaking and fidgeting constantly.  Anything we talked about, he would end up joining in the conversation with a raised voice and intense look on his face.  He himself said he couldn't calm down.  By the end of dinner I found that both my mother and I were talking in monotone voices if we talked at all.  It was so hard to see him like that!

I called the neuropsychiatrist first thing Monday morning.  He had me increase Tim's seroquel and so far things seem to have calmed down some as far as the temper flares.  It also seems to have helped some with the leg hitting which had decreased significantly before going away but then he did quite a bit of it while on vacation.  Now with the increased seroquel, it does seem to be calming down again.  Fingers crossed!

And just because things never seem to calm down as far as new symptoms are concerned....about a week before going away, I started noticing that he is talking A LOT.  And talking really quickly, almost in a mumble.  Often I can't even quite make out what he is saying.  It also doesn't seem to matter if anyone is in the room or even listening.  He just can't stop talking.  This unfortunately only seems to be increasing both over our vacation and since coming home.  Not sure what's going on there but we go back to the neuropsychiatrist next week.  Hoping he can offer some insight.  Most of the time it's not a big deal but it's hard when you're trying to watch something on tv or trying to concentrate on something and he just can't stop talking.  He even consciously tries not to talk and ends up sending out a barrage of "I don't know why I'm talking. I just can't stop.  I wish I could just stop talking. I don't know why I do it."  I can't even imagine what it's like for him not being able to control something as simple as talking.  Just one more thing this nasty disease has taken over for him.  Makes me so angry!

With all of the changes in the last few weeks, it of course starts that little worry that's always present in the back of my head about what the next MRI will show.  I'm truly hoping that it was just the stress of traveling and being out of his element that caused the backtracking.  Now that we're back to routine, hopefully things will simmer down at least to where they were before leaving.  Do I dare hope for better?

Progress?

Haven't written in a while.  Things have been pretty busy.  And as I suspected, spending time with friends and family is just the medicine I need.  I have been feeling much better and I truly believe that is in direct correlation to having spent time with friends and family.  It started with an overnight at my cousin's house.  Left the kids and Tim home alone which I was a little apprehensive about but all went well and I had a great time.

Then my mom came out for three days and we scrapbooked during the days with friends joining us twice as well.  Out of that came a standing once a week scrapbooking day which we already stuck with this week.  So good to have something to look forward to!

This past weekend, we went to visit my brother and family in New Hampshire and my cousin and her son came along as well.  My oldest daughter, Emma, watched all of the kids while the adults went out.  We had such a great time!  Tim kept commenting on how much he was enjoying himself while we were out.  He really seemed a lot like his old self.

I have said that this kind of time is what gets me through and I really do feel fortified now.  I just need to make sure it keeps happening!

I have been trying really hard to reserve judgement on whether the weaning process with the Keppra is making a difference.  I have vaguely felt that the leg pounding has decreased (though certainly not stopped!). Being a behavior analyst, I should have taken some data before so I would have something concrete to base it on.  But as usual for behavior analysts, I don't follow through when it comes to my own family!

I definitely have been seeing some changes however in personality, motivation, and multi-step task completion.  As I said earlier, that night we went out in New Hampshire he was "fitting in" more than he has in a while.  He also sat with us and didn't try to wander off.  He has definitely been more talkative and participates more in conversations.  And other friends have noticed it as well which is my true gauge as I'm with him every day so I don't always trust my opinions.

And then tonight....it's not going to sound like much but it was huge for me!  We went out to do the trash.  Typically I have to verbally walk him through every step of how to sort the recyclables and then go back and correct what he still hasn't gotten right.  He also will often try to put more than one barrel out for the trash even though we are only allowed to put one out so I will have to go out and take the bags out of the second barrel and pile them on top of the ones in the first barrel.  Well tonight, he collected trash throughout the house and carried the recyclables out with me. When we got outside, he put the trash into the one barrel and pulled it out to the street.  We started to sort the recyclables and I was prepared to remind him how but he just did it all on his own.  I even stopped helping and just watched amazed at what I was seeing!

Probably should have left it at that but when we came in, I asked him to help me empty the dishwasher and he jumped right in!  Like I said, small potatoes in most houses but it has been years since he was able to complete these tasks without a verbal walkthrough!

I'm no longer talking myself out of the changes I'm seeing.  They are there!  And he's only got this week left on the smaller dose of Keppra and then he's done with it.  Can't wait to see what else we might see!