Yesterday (Thursday, September 22, 2016) started early – 4am early. I rolled out of bed at 4:05am, exercised, got ready and Mom and I were headed to Nashville for an 8:30am doctor’s appointment by 6:05am. It seemed to take longer to get there then to get back, but that was probably just because I was more nervous going than coming back. Mom brought along a book on tape, so that distracted me much of the way. By the time we hit Lebanon, TN we had run into our first major traffic jam. I know we’ve hit Nashville by their traffic jams, but Lebanon was a little too early for this!
When we did get to Nashville, it didn’t disappoint – there were traffic jams all over. I feel extremely blessed to live in Knoxville where the traffic jams (when there are ones) usually don’t take that long to get out of. I don’t think I’d ever survive in Atlanta, Los Angeles, New York City or Nashville traffic! As we were driving along, all the sudden Mom goes, "Look!". For whatever reason, there is a huge sculpture of a whisk on the side of the road:
Even with the traffic, Mom and I made it to the neurologist’s office with 20 minutes to spare. I don’t think we’ve ever done that before. :)
I checked in with the front desk and went to use the restroom. The minute I was done with that, I was taken back to get my vitals. I warned the nurse my blood pressure was probably going to be high because I was nervous about getting there on time. It was (but thankfully not the lower number) at 152/75. The nurse took Mom and I back to a room and within 5 minutes or less, Dr. T. was in. It was great to see him again. We chatted a moment and then got down to business. He noticed that my left hand and arm were a lot looser than before (that’s a good thing!). But when it came to my leg/foot, they were still tight. He repeatedly (OK maybe 3 or 4 times) asked me just to relax and let him do the work (in bending my leg), but I couldn’t. I told him about changing the settings and what happened with each. He seemed surprised that I was at a lower level. I think I had convinced him last time that the second I left his office I would be turning up the juice in the device – haha. He asked if I changed frequencies and I told him I had and that I was on Frequency B now. I told him that for the past two weeks I had remained on the same level – 2.60. But that above that, I felt drawing up of my toes. I also admitted though that even at 2.60 volts, my toes went back to curling under and my foot went back to turning in. I also admitted that walking wasn’t “perfect.” I told him of my fear in walking in wide open spaces where there is nothing to grab ahold of if I need to, to keep from falling. I told him about the “performance anxiety” I get when I think or know people are watching me walk (more on this later). He had me walk and he said he could see that my toes were still curling under and my foot was pulling in and he said that meant that I was on too low a setting. He listened to everything I told him and then made his suggestions. He programmed yet another frequency – “frequency C”. He said with this frequency he was going to interleave – alternate between frequencies. Just as a background: Frequency A has one “spot” active on it. Frequency B has 2 “spots” active on it (the one on Frequency A and the one on Frequency B). Dr. T. drew me a picture of how everything works.:
Frequency C would alternate between the two spots on frequency B. Dr. T. said that some patients see huge progress with this and it also saves greatly on battery power. So he programmed Frequency C. As he was doing that, his nurse stuck her head in and said that his 8am appointment just made it in 5 minutes after he/she was due. To which Dr. T. responded, “You mean, 35 minutes after they were do?” She apologized and said yes. She meant 5 minutes after the grace period. Dr. T. said he would go ahead and see the patient after he was done with me. So that’s how I got in early. ;) After the nurse left, he got back to programming. He said that he bumped my electricity up from 2.60 to 3.40.
His suggestions (which he also wrote down for me) are:
1. Stay on Frequency B at 3.40. I’m either to sit on this for 2 weeks at least or, if I need more electricity go up and sit on that for 2 weeks.
2. If suggestion 1 doesn’t work, I’m to go all the way down to 2.0 or 2.10 volts and sit on that for about 2 weeks at least.
3. If suggestions 1 and 2 don’t work, I’m to switch to Frequency C and sit on that for at least 2 weeks.
4. And if neither suggestion 1, 2 or 3 work, I’m to call him.
He gave me complete freedom to once again “play” with the amount of electricity and the frequencies. He said I have a lot of freedom in this and there are lots and lots of levels and options I can play with. He said that I can tell people that he’s given me permission to experiment and that I cannot do any damage to myself. :) There is only so high up I can go and only so low I can go on the settings and I’m not going to hurt myself by experimenting. I’m a person that likes definitive answers, so I asked where I should be now and he said that that is different in each dystonia patient. There is no “right” time frame or “wrong” time frame. He said that he’d like to see me again in 3-4 months so he sent my scheduling coordinator, Patricia, in and we scheduled for January 31 at 11:30am (no more 8:30 appointment times…I can actually sleep in this time!). It was a great appointment. I left Dr. T. having a game plan and even more than that – increased hope!
My next appointment was with the neuropsychologist and it wasn’t until 10am. We were done with Dr. T at 8:45am. Patricia said that she would see if she could get the appointment bummed up, so we wouldn’t have to wait around. In the meantime, Mom and I went back to the waiting room. One thing about waiting in the waiting room - it makes me feel so much better about myself and makes realize how blessed I am because it could be so much worse. There are people in there that have devastating injuries or diseases. It almost makes me think I shouldn't be there. My problem is not a problem compared to most of the other people waiting.
While we were waiting, I saw my neurosurgeon, Dr. K. walk in with a bunch of people. Mom thought they may be going to a meeting. I don’t think he saw me, but it was still good to see him.
As we continued to wait, my left hand started to draw up and make awkward movements. When Patricia came back out to let us know the doctor was on her way over, I asked if I could see Dr. T. one more time (if he had a second), real quick to show him what my hand was doing. She said that she’d ask him. A couple minutes later, she came back out and said that his nurse would come and take me back soon to lower the 3.4 volts because Dr. T. said he probably raised it too fast and too high. Jessica, the DBS nurse, came and got me shortly after that. She was a godsend. She did more than adjust the level, she answered questions and she brought all the medical stuff to a human level and helped me understand it so much more. She said that if I’m experiencing “drawing up” or abnormal twitching or posturing that means that I have too much electricity and I need to turn the device down. If I’m experiencing things I did before the surgery: toes curling under, foot curling inwards that means I have too little electricity. I told her that sometimes I have really great days (1, 2 or more in a row) and then in the blink of an eye, I go right back to where I was before the good days. She said that means I need more electricity. The brain can get used to how much electricity it’s been given and become complacent. In these cases, it needs more electricity. She said eventually things will even out and I’ll be able to stay on one level, but even then, sometimes there will need to be a turn-up of the electricity for when the brain has become complacent again. Dr. T. initially had me at 3.4 volts. She took me down to 2.90. When I was still experiencing the abnormal movements, she took me down to 2.60 – where I was initially at when I came in. That got me a little sad. If Dr. T. said that I needed to go up, I wanted to go up! I told her (as I had also told Dt. T.) that since my left hand is not my dominate hand, I’m OK with it not being “perfect”. I’d rather have use of my leg and foot than have my hand be the best it can be. She said she understood that. She didn’t want my hand to be troublesome though. It could be annoying, but not troublesome. If I could still do things I needed to do with it and my concentration not be broken by it, she said it was fine. If it got to the point where I was only ever concentrating on it (meaning that it was more than noticeable, and couldn’t assist me), then the electricity needed to come down. We settled on a compromise: she brought the electricity back up from 2.60 to 3.10. So we still went down from the initial 3.40, but not so far down that I wasn’t happy about it. I asked her was the reason I didn’t see "fast" results in my leg or foot because they were farther from my brain. That’s when we started talking about time frames. She said that during the DBS surgery, patients with Parkinson’s or tremors see immediate results. Dystonia is different. She says she gets calls from patients every day saying that they don’t see any results yet and they are only a week out from surgery. She said patients start doubting themselves and the process because they don’t see instant results. Every dystonia patient is different. Some see results in as little as 3 months, some see results at 6 months, some at 7 or 8 months or longer. It’s a process. In a world where we can get something from Amazon Prime in 2 hours, we all want instant gratification and to see results right now. Dystonia neither works like that nor cares about time frames. DBS will work on the disease in time, I just have to give it time. I left Jessica with the device set at 3.10 volts and her business card. She said I could call her anytime with any question.
By the time I was done with Jessica, it was time to do the neuro-psych testing – oh what fun (I’m being sarcastic)! Shelby, a grad student, gave me all the tests. We did things a little backward by doing the testing first and then meeting with the actual neuropsychologist. It was the exact same testing as I had done a year ago before the surgery. It’s meant to push you to the very edge of your brain capacity and it does. The whole appointment, from testing, to the grading, to the meeting with the neuropsychologist took 3 hours.
It started out simple enough:
“What’s today’s date?”
"What hospital are we at?”
“What city and state are we in?”
“What county are we in?” (I knew this one, even though I don’t live there – yay me!).
And then it slowly got harder:
“I’m going to give you a list of words. Tell me as many of the words as you remember.”
This may not initially seem hard, but oh.my.goodness. – let me just say it was incredibly hard. Shelby repeated the words 4 times in different parts of the exam. I got a little better as I went along. I remember today some of the words: candle, famer, wagon, feather, paper…but there were like 20 words I had to remember and I got so frustrated when I couldn’t think of them.
Then there were tests like, “In 60 seconds, tell me all the words you can think of that begin with the letter “F”, but you can’t use numbers, places or people’s names." I did OK with that letter (although at the time, I didn’t think I did). Then she gave me the letter “A” and I completely blanked after the word “apple”. A – the easiest of letters (I would have guessed) turned into the hardest. I did think of other words, but nowhere near as many words as I had thought of for “F”.
Then I was given pictures of objects to identify. I got all of them except, I hesitated on “sea horse.” I did eventually get that one too, but I told Shelby after the test was done that the first word that popped into my head was “unicorn”. I knew it wasn’t a unicorn, but I couldn’t get that word out of my head.
The next test was Shelby telling me a story and I was to tell it back to her using the same language she used. I had done pretty well on this test last year, but this year, well right off the bat, I had problems. But she read it again a little while later and I did better and then once more a little while after that and that time I got it almost verbatim.: “On Monday, March 5 a title wave hit Miami. Although there was 2 million dollars’ worth of damage to the waterfront, only 7 people were injured and no one was killed.” The first time around, I said it was a hurricane and not a title wave. But the second and third times were great. The second time, I was a bit slow, but the third time I rattled it all off to her. Shelby commented that I was the only one of her patients that got the detail of it being “to the waterfront.” She was impressed and said that I got every detail correct. Yay, me!
Then came the “ink blob” test. Actually, I’m not sure that that’s what it was, but I had to identify objects and shapes that were the same. Then I had to trace lines going from 1 to 2 to 3 and so on. Then it was on to tracing letters A to B to C and so on. Then it got harder. I had to trace numbers and letters together 1 to A, 2 to B, 3 to C and so on.
Then it was time for the reading and color test. The words: red, blue and green were printed on the page but red was in green print, blue was in red print and red was in blue print. I had to say the color and not the word and vice-versa. While all these tests may not seem hard initially, believe me – they are! I got frustrated and my “type A” personality started to show! But I survived.
After all the testing was done, I went back out to the waiting room while it was all graded. Once it was, Dr. B., the neuropsychologist came and got Mom and me and led us back to get the results. In some areas, I declined slightly, but in other areas I improved. All-in-all she said it was a good report. She asked if I thought my memory was better or worse after the surgery. I told her that I felt like my short term memory wasn’t what it used to be, but my long term memory seemed the same. Mom told her that she thought I had an exceptional memory and if any memory loss had taken place it only brought me down to a “normal” range. She told the doctor I remember every detail of miniscule things. I told the doctor my memory was for the “useless” information, the odd, weird stuff. The doctor did have me do one test for her again right then and there. The words that Shelby had asked me to remember, Dr. B. asked me to pick out from a list she rattled off. I did and she set it aside for a while. Later she came back to it and said that I improved by 1. She said in the test that Shelby had given me, I missed two, which in their expertise made me “below average” for that test, but when the test was repeated I got one of the two correct, which put me in the “average for my age” category. The other one that I eventually missed, I hesitated on, which told Dr. B. that I had the answer – that I had remembered hearing that word and it was in my brain, but I eventually said, “no” as my answer anyway. Mom piped up then and said, "what about extraneous circumstances… she got up at 4am to get here, she’s probably hungry, she’s not a great test taker…… Don’t you take those in to factor?" To which Dr. B. enthusiastically agreed with which is why she said that they can’t always take what the tests say for face-value, They have to meet with the patient and see what’s going on and that’s why she gave it to me again. She told me I was not to leave her and the room thinking in my mind that I had failed in any way, because I had not and results are what they are. She said I had no sign of Alzheimer’s disease and that all the information was there in my brain, it was just slower in getting it out. She acknowledged that she knows that is very frustrating. She did back me up though on my long term memory being great. She said I got every detail right in the story. I excelled at naming names. I told her this was because Shelby gave me the task of naming as many boys names as I could within a minute. I have three brothers and a dad. I have 13 boy cousins. I gave Shelby 23 boys names in 60 seconds. Dr. B. said that I was contextualizing things like I would do with a story. I did the same when asked to name animals. I went from thinking of pets, to thinking of animals at the zoo to thinking of ocean animals. As long as I have a story to remember things by, I’m usually OK. I even told her that in high school and college, I would memorize notes for tests by putting them to the tune of “Amazing Grace”. I definitely have a more story-like, song-like way of remembering things as opposed to actually spitting back facts. I’m a horrible test taker though, I always have been, so it didn’t really surprise me that I got tripped up on some things. Dr. B. described me to a “T” when she said, “After Shelby gave you the letter “A” and told you to name as many words as possible that begin with the letter "A" and after you said “apple” did you begin obsessing over the fact that you couldn’t think of anything else?” Yes, why yes, I did! Dr. B. said that’s what she thought had happened and that by obsessing over it, I ate up 20-30 seconds of my allotted time. During my appointment with Dr. B., Jessica, the DBS nurse, stuck her head in and asked how I was doing. I responded, “Fine, but I think I’m going to turn the electricity down.” She smiled and said that that is what she and Dr. T. thought I would do. I left it at 3.10 all day yesterday, but this morning, I turned it down to 3.00. I may need to turn it down even more, but we’ll see. I left the neuropsychology appointment more fascinated and amazed than ever at how the brain works.
After that appointment, Mom and I had exactly an hour before my motor skills appointment. We grabbed lunch at Panera Bread and talked about the day so far.
The motor skills test was done by Jen, the physical therapist that did my test before the surgery. I’m glad I got a familiar face! I should say, obviously, Dr. T. is a familiar face, but Dr. B. was a different neuropsychologist than who I saw before and Shelby was a different grad student then who I saw before.
Right off the bat, I told Jen that I have performance anxiety. I didn’t know how to describe it any better. I actually mentioned this to both Dr. T. and Dr. B. earlier. They both acknowledged it, but couldn’t really give me concrete answers as to how to get over it. What I mean by performance anxiety (and I know a lot of you reading this have seen it!) is: I can be walking pretty well and the second I see someone watching me walk or feel like someone is watching me, I trip up. My muscles tense up and I have the overwhelming feeling, I’m going to fall. I have come up with one technique that seems to work sometimes: I wear sunglasses. Yeah, go ahead and laugh, but somehow – even though I can still see people and people can still see me – it gives me a sense of a barrier or shield and I can walk without feeling like people are watching me. I also just pray like crazy. But I asked Jen if she knew of a way to get rid of the anxiety. Her best answer was to just keep doing it until I was comfortable with it.
I kind of almost wished that Dr. T. hadn’t turned up the electricity in my device before I saw Jen, because by the time I saw her, I wasn’t as “good” as I had been the past couple of weeks. I was more rigid and stiff. However, at the same time, I’m happy that she got to see what she saw. She asked me questions and then recorded me doing certain things, moving certain ways, talking, drinking water and then the dreaded walking. First, I walked without the cane. I told her I could do so much better and had done so much better in the past two weeks. She then suggested I walk using the cane – which I did. It still wasn’t up to my standards, but oh well, it was what it was. She commented that she thought I was a lot faster than I was last year. I told her that at times, I can be very fast (this was NOT displayed yesterday in any way!). I’ve had co-workers comment that they thought I was using the walker because I was walking so fast. However, that’s not really the norm – yet! But Jen said she definitely saw that I was faster and able to move better than last year. She (as well as Dr. B.) asked how I was feeling emotionally. While there are days that I definitely feel down and “woe is me”, I told her that I feel so much more joyful and happy. This surgery has given me hope again, when I thought there wasn’t any. I have the overall feeling that things will get even better from here. I’m happy. She was pleased with the appointment. As I was leaving, I overheard her tell a co-worker, “Boy that appointment was fast!” I smiled, thankful for fast. And fast it was. It was supposed to last up to 2 hours and I was done in one.
Mom and I left at 3pm Central time (4pm our time – Eastern). While there was major traffic, we still got out of Nashville rather quickly. I kind of wanted to stay as I saw Carrie Underwood was in concert that night – but I knew there wouldn’t be any tickets. I did however want to get back to Knoxville in time to watch the season premiere of “Chicago Med.” We rolled into Knoxville right around 7pm. It was a long day. It was a full day. It was a good day.
I had asked that God would be all over the day. That everything that happened would be ordained by Him. And it was – a thousand times over – it was. I saw God’s hand over each and every aspect of it. It wasn’t lost on me that it was the first day of Fall. I prayed that on the first day of Fall I wouldn’t have any falls and I didn’t! Sometimes, life gets so overwhelming that I forget to thank God for the little things, but it’s in the little things that I sometimes find the greatest joys. I had the song, “Trust and Obey” stuck in my head all day. I can only say it came from God, because I didn’t hear it anywhere. Trust. It’s something I struggle with on a daily basis. To put 100 % trust in something or someone or some process is exceedingly hard for me to do, but little by little, I’m making progress. Obey – this is also something I struggle with on a daily basis. I want to be “my own person”, but I must obey other’s laws. I must obey the doctors. I must obey my parents. I must obey my boss. I must obey my body. I must obey treatment. I must obey protocol. God’s working on me in this area too. While yesterday, I was confused as to why I had that song playing on a rolodex in my head, today it’s become perfectly clear to me why. God wants me to both trust and obey more. I’m never going to be perfect. My walking will never be perfect. Perfect doesn’t exist until we go to Heaven. God’s allowing me to grow leaps and bounds through this process of learning to trust and obey Him in everything. Everything was, is and will be OK because after all, God’s Got This!!
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