My appointment and an afternoon in DC

This was a marathon day, for sure. We got up at 7 which was really like 5am. Got ready and went downstairs to find some breakfast. The buffet was delicious.  Just what we needed to get our day started off right. We hopped on the shuttle to the hospital and ran into our friend from last night, Lehi was his name. It was good to see him. After miscellaneous stops to the different hotels in the area we finally made it to our destination. We had to go through security again.... The man doing the scanning was a jovial Jamaican man. I really enjoyed his company. Just a big teddy bear kind of guy. He was a hoot. He told us that if we come back that we should get one of those NIH security cards so we wouldn't have to get searched every time.  I told him I'd still come in there so I could visit with him. He had the coolest accent. We have met some of the nicest people out here. Everyone we've come into contact with whether at the hospital or out on the street have just been so pleasant and fun to talk to. I have been pleasantly surprised.

I didn't have to wait long for my appointment. I was in a room and talking with a nurse within 5 minutes of being there. They took my vitals, made me walk here, do all sorts of strength tests, cognitive tests....which I embarrassed to say I sucked at. Trying to remember 5 words and then repeat them back at a later time. That was horrible.  I got 3 of the 5. Then she asked me to start at 100 and count back by 7 as far as I could. Oh my, what an epic fail that was. Somehow I came up with 103? Hello?! I can't believe they let me out in public. Needless to say I didn't do so good on that one. Then what killed me was coming up with words that started with F and they couldn't be proper nouns. I came up with flat, flamingo, foot (Wayne gave me a clue by waving his foot), there were some other totally random ones, but I just drew a complete blank. Looking back I had the most opportune time to use the word "farfle"! A true Bear Lake-ism.... dang it!

We were in there with the doctor for about an hour doing these tests and answering questions. She then told me she was going to go discuss her findings with a board of other doctors who deal with movement disorders. It consisted of her boss and others...then she'd come back with me and we'd go up there with the group and they would ask me questions and "study" me. Let me tell ya, THAT was not my favorite.  I felt like an idiot, self conscious,  and way embarrassed. The Big Cheese doctor looked like President Henry B Eyring. He asked me to walk this way, walk that way, how do you feel, do you do this all the time, show me how you can make yourself stop the movements....it went on and on.  It was quite stressful.  After we met with the group, then they sent us away and told us they were going to discuss a little more about me and they would have their answer in a bit. We went back to the waiting room. I just wanted to cry. That stressed me out. It wasn't very long though and the original doctor came in and took us back to our room. She told me that they decided I would be an excellent candidate for their study if I was willing to participate.  She said they agreed with the doc in SLC's diagnosis of a functional movement disorder. They were intrigued with my ability to make it stop when I thought about it hard enough. She felt that there may be an underlying stressor that may have caused this to flair up, such as my step dad's passing last year.....but I'm not convinced on that one. They are going to look at a lot of biological factors that might be the cause such as genetics, chemical stuff, etc.  So it should be interesting.  I'll be coming back out here again in July or August for a few days, this time staying in the hospital itself but will be free to go as I please. They are going to be contacting me the end of the week. So, it wasn't the miracle answer I was looking for, but I think we are on the right track.

After our appointment we decided to eat lunch at the cafeteria.  We got on the elevator with this guy. He was very friendly. He was heading to lunch himself so invited us along to find the good place to eat. Oh my! We went on an adventure trailing all over halls and strange corridors.  I was wishing we had left some bread crumbs so we could find our way back. Lunch was tasty, as promised.  And by some miracle we found our way back to the lobby. But we did get lost trying to find a bathroom. :)

The hospital has a shuttle bus that drives around their HUGE campus.  So we took the bus to the place where we could catch the Metro. It was like a deep dark abyss with an escalator. Rather scary!  So we get down there and try to make sense of the purchasing of the tickets. We asked the attendants for some direction and he explained it to me, but I didn't quite get what he was saying. So we went back over to the payment machine.... about this time Wayne's phone rings. It was our friend, Monte. It was like Divine intervention. Just the person we needed to talk to since he lives out here and knows these things. I know Heavenly Father was watching over us. How else would Monte know we needed him? :) I just love those tender mercies. Anyway, Monte lined us out and we were golden.  We figured out what stop we wanted on the map and jumped on. It was a whole different world. We were brave and jumped on another train and ended up at the Smithsonian stop. As we climbed out of the abyss to the daylight we were greeted with an amazing view. The Smithsonian Museum, the US Capitol, the National Archives, etc.... The Washington Monument stood so high and proud. It was just amazing.

The National Mall was just incredible! I felt so honored and humbled to be able to go see these beautiful structures and pieces of history. The buildings were so huge! We kind of did the Cliff Notes version of the Natural History and American History Museums. We just didn't have enough time. But I'm so glad we got to take a peek. Just amazing! Wayne and I walked from the Smithsonian to the White House, to the Lincoln Memorial to the Washington Monument to the US Capitol. We walked a long, long ways. I am bushed. I guess today was the first day the Washington Memorial was opened back up. I walked up and touched it. Some folks there suggested the best way to see it is to lay on your back with your bum against the Monument and put your feet in the air. So, of course, I did. It felt wonderful and the view was pretty cool. A whole new perspective. We noticed as we were walking around the Mall that in areas it smelled like a dirty horse stall, at times it was quite powerful.  Wayne explained that it was due to all the politicians there in DC....I think he may be on to something since it was the most fragrant over by the White House.

We headed back to our hotel around 8pm. We navigated the metro like we were pros. We even brached out and took a different station down by the US Capitol. We were proud of ourselves.  We got back to Bethesda and were walking back to our hotel looking for a place to eat dinner. Nearby was a place called the Tastee Diner. It was an old converted rail car made into a restaurant.  The food was excellent.  I had 2 pork chops, mashed potatoes, and apple sauce. Wayne had ham, with steamed cabbage, carrots and potatoes.  It was delicious too. They had homemade rolls too. Our waiter was on the spot and did great. It was a neat place with a lot of character and a lot of characters there too. ;) Oh my!

All in all it was just an amazing day. How blessed I am to have such an amazing opportunity as this. What an incredible country we live in!  So glad I was able to see such a historical place. Today will be a day I will cherish always. So glad I got to spend it with my love. I will go to sleep tonight with a smile on my face. Thank you, Heavenly Father!  :) 

The trip to Maryland

Well, I am as far east as I have ever been. Wayne and I started out our Mother's Day Sunday by making breakfast for my mom. It was nice. I was glad I got to be here for that. Mom was super swell and drove Wayne and I to the airport. It was cold and rainy. We got through security and waited for our flight. I was wishing wayne and I could have been at church today to listen to Justin's talk. I tried to send him good vibes. I hope he forgives me for ditching him.

The flight was just over 4 hours. It was pretty uneventful.  It was cloudy until we got over Iowa somewhere.  We hit some pretty good turbulance from the Tstorms. We were flying at 39,000ft and there were clouds still above us. Dandy Tstorms....  Thankfully it didn't last too long.  At long last we flew into Baltimore. It was so cool. We saw the bay, no idea what its called, but I knew it was part of the Atlantic Ocean.  So cool! It really put into perspective the book I'm reading about the American Revolution. I couldn't get over how green it was and how many trees there were. Incredible!  I also thought of my heritage.  Somewhere on my dad's side we're related to Lord Baltimore,  the guy who the city was named after. Pretty dang cool, I thought.

So we land at 6pm but we missed the NIH shuttle. It left at 5:30. The next one was at 8:00pm. We enjoyed a nice seafood dinner. It was very pleasant. It took ua a little while to figure out where the shuttle was supposed to pick us up. We thought it was downstairs then we find out its upstairs. The sun was shining and it was 85. It felt sooooo wonderful since it was only 40 at home when we left!

Eventually the shuttle showed up. The young man driving was very nice.  He did awesome driving us to Bethesda where the National Institute of Health is. He drove like a race car driver.  It was fun! I was glad he was driving as the traffic got a little hairy at times. It took us about 45 minutes to get to the hospital.  As we were driving we looked ahead and right in front of us was the Washington DC temple a brilliant white glowing in the light of dusk. It was amazing. My heart just smiled and I felt such a peace come over me. It was so cool! I tried to take a picture but it was not so grand. That was such a neat thing to see. I had no idea we were so close!

We got dropped off at the front gate. We had to go throgh security, much like the airport security.  Wayne and I were issued passes with our pictures.  We got back on the shuttle and were dropped off at the main doors.  The place was like a morge. There was no one in sight. The foyer of this place was incredible.  I was just impressed with the architecture.  We finally found admissions.  There was another gentleman with us in a wheelchair.  He had came in on the same flight as us. Turns out he was staying at the same hotel as we were. As we got checked in the hospital called the hotel and had a shuttle sent to pick the three of us up. They hurried us through check in so we could catch the shuttle with this guy.  I received my snazzy hospital bracelet and we went out in the front to meet the shuttle. The guy from our flight was there still so we knew we hadn't missed our ride. It was 9pm.

  It was a beautiful night. Reminded me of summers nights. It felt so good. The NIH is like this fortress on a hill. There is a 10 foot rod iron fence clear around this 400 acre campus. We were about 1/8 mile in from the main road. Pretty soon it was 9:15 and no shuttle.  A taxi came by asked if any of us called a taxi...nope, not us. We kept waiting for that shuttle to come through the security gates. The trees lining the road had these really cool LED lights that flashed in a dripping motion. They were about 12 inches in length and they were randomly hung through the branches. They looked like lightning bugs. It was so cool. Finally at 9:30 we look up the number to the hotel and called them. They said they had already came but no one was there.  Yeah, right. So wayne told him where we were. He said he'd meet us there at the front entrance. Time passed, still no shuttle so we decided to go down to the front security gate to wait for the guy. So Wayne and I and our new friend in the wheelchair start walking to the gate. We get there and they are starting to close up for the night. It was 10 pm. As we walked to the iron gate we passed a security guy we asked if we would be able to get through okay. He said yes. We got there only to find you need a magnetic key to pass out of the locked double gate. We didn't have one of those. I ran back and tracked down the security guy. He said you dont have an NIH card?  Uh....no we just got here. :) so he was super nice and let us out. We had to go one by one. He swiped then you'd go through the first gate, then you had to close the door and it would open the next gate. Crazy insane! What sort of place did I volunteer to come to?

Meanwhile, we finally escape the jaws of the NIH campus and we still don't see the hotel shuttle. Pretty soon Wayne's cell rings.... its the driver asking where we are. He said he was there. Hmmmm, don't think so. After 15 minutes and 2 phone calls he FINALLY finds us. Come to find out he went to the Walter Reed Military hospital which was nearby. Oops... Ai yi yi! We thought about just walking but we didn't want to make our new friend go through that. It was only a 1 1/2 miles away. The other thing was we really had no idea where we were going. There are no mountains for landmarks out here. It's crazy! I'm so lost.

By the time we got to the hotel it was 10:30pm. The hotel staff were wonderful. They greeted us with a warm walnut chocolate chip cookie. Delicious!  So now I go back over there tomorrow for my appointment at 9am. This two hour time difference is killing me. I'm not tired yet!  I'm excited to see what tomorrow brings and curious too. Hopefully Wayne and I will have time to go explore tomorrow after my appointment.  We'll get to experience the Metro! ;)

A new door opening

I received a call last Tuesday while I was in Missoula, MT for a work meeting. It was from the National Institute of Health asking if I would still like to participate in their Movement Disorder study.  I was floored.  I had all but given up hope that they'd call. I mean, it's been like five months since the neurologist submitted my name for the study... They wanted me to come May 12th, just 13 days away at the time.  I couldn't believe it...could I make it work? Could Wayne come with me? What were they going to do? Would this help? So many questions...

After a quick call to Wayne I told them that I was available. They asked if I wanted anyone to come with me. Of course I said my husband, please! We fly out this Sunday and will back Tuesday.  Whirlwind trip, for certain.  I admit I am scared to death.  Wayne summed it up best... he'd rather be dropped off in the wilderness with just the clothes on his back then go back East. I totally agree. I just keep telling myself it's going to be an adventure. :)

I was just excited I was "normal" enough to drive myself to Missoula last week!  Now this??! It has been a long time since I drove myself anywhere that sort of distance. I was really worried, but I did fine and didn't seem to have any problems.  I was a bit twitchy in the afternoons and evenings while I was there, but I think I hid it well from my coworkers. All in all my trip last week gave me confidence that I can do it.  I will admit that I was pretty dang worn out when I got back home on Friday night.  I'm sure I over-did it....ok, I KNOW I did. :)   

Now I get to fly somewhere I've never been. SO thankful I won't be alone. I don't think I could do it otherwise. I told Wayne what if they decide I don't fit their requirements for their study? I would feel so guilty having NIH invest in airline and hotel accommodations and not be able to help them.  Wayne, of course, had the perfect reply..."It's science. You're part of a random sample. That's just how science works."  Leave it to my left brain.  :)  

Well, whatever they find I hope it helps....not only me but also helps others that are going through this bizarre disorder.  I'm not sure if they're going to do an MRI with their fancy MRI machine that looks at the functional areas or what.  Guess that's part of the adventure.
I'll try and keep up with the haps over the next couple days on my blog. 
Stay tuned!  :)