This Turn-It-Up-Tuesday started early – like 5:45am early. I got up and exercised on the bike. I knew it was going to be a busy day and wasn’t sure that I would have enough time at the end of the day to get a work-out in, so, sacrificing a little sleep was going to have to be the trade-off. It was well worth it! After I got ready, I turned up my DBS device. Slow and steady, right? So I turned it up by .10 which made it 2.60.
I didn’t feel anything, of course. I think I’m getting used to this. ;)
Today was different though because it was my return appointment to Vanderbilt. I was really excited about it. I didn’t know what to expect, but that didn’t make me any less excited (in a good way!) about it.
My appointment was at 10am CST and Mom was going with me. We left at 8am EST and arrived a little after 9:30am CST. I love when we gain an hour. It’s not so much fun when we’re coming home though. On the way there, we always pass by this lot that is just car after car after car. I think it’s where those who drive 18-wheelers, park their cars while they are driving the 18-wheelers. Today I tried (and tried being the operative word!) to get a picture of it.
Then I saw this van in front of us and took this picture:
Then I saw a Johnny Cash billboard. I love Johnny Cash, so I took a picture of it.:
A little while later, Mom and I both saw a car and at the exact same time (I kid you not) said, “Interesting”. We were both talking about the color of it. Out of all the words we could of come up with to describe it, we both picked the word, ”interesting.” That, in and of itself is interesting! Like mother, like daughter. ;)
Like I said earlier, we arrived a half hour before my appointment. Anyone who really knows me, knows that that was just fine with me! Mom went across the street to get a coffee and I checked in. No sooner had I taken a seat (which grant it was a few minutes because after a 2 and ½ hour trip, I had to use the bathroom), then my name was called. Mom was still at the coffee shop, but they took me back and got my vitals. This time my blood pressure was 117/82. I must not have been that nervous. ;) But I was cold. The medical assistant taking my temperature asked if I actually had the thermometer under my tongue. Yes, I did, but it took forever to read and when it did my temperature was 97.6. At least I know I don’t have a fever! Mom came in in the middle all of this.
After vitals were taken, we were lead back to the exam room and Dr. T. came in shortly after that. He asked if I had been turning the device up every week. What?!?!?! Of COURSE I was!! Who wouldn’t after all the trouble of all the surgeries?!! Maybe some of his patients forgot to do it? I tried to figure out why he would have asked that if someone hadn’t given him a reason to ask. I told him that I had been turning it up by .10 every week, but I hadn’t really seen any results. I told him about the two falls I had and about thinking that I experienced some electrical sensation in my middle toe. He asked if I had any problems with turning it up each week and I said no. I told him I was impatient though and he acknowledged that he could see why I would be. He said that after all the surgeries, to want to see immediate results is not unfathomable. I told him about all my friends on Facebook who tagged me in that Parkinson’s patient’s DBS video that shows him going from shaking uncontrollably to completely still. If you were one of those friends, thank you. I did have about 10 of you share it with me! If only DBS for dystonia worked like it does for Parkinson’s then I’d be all set. Unfortunately, for dystonia it can take months to take effect. In fact, Dr. T. said 3-6 months, but then the medical assistant said it could even be up to a year! I have a feeling that I’m just going to have to march to the beat of my own drum. I have to stop worrying about what should happen and when it should happen and just trust God that it will happen in HIS time!
Anyway, back to the appointment. Dr. T. wanted to see me walk, so I did, but not with my walker or cane and not very good at all! I held on to the wall most of the time and told Dr. T. that that’s what I was doing during one of my falls. Thankfully, he didn’t make me walk far or for very long. He could see what was going on. Then he tested my motor skills, they were also not very good on that left leg and arm. And then, music to my ears: He said he was going to turn my device up and also program another frequency into it. So he did. YAY!!!! As he was doing so, he would ask if I was OK or if I felt any different. I didn’t feel any different and I was OK. Then at one point, I gasped a little. He was like, “What?!” And I said, "I think I felt something in my foot". To which he responded, “You’re not even turned on!” (He had turned off the device for a minute.) Really?!! Wow, I must really, really, really want to feel something! We all (Dr. T., myself and Mom) had a good laugh about that. While Dr. T. was programming my device, we chit-chatted. I found out that he has two sons and his wife’s birthday is July 4. He found out that my brother, sister-in-law and niece are moving to Knoxville in July and that my brother and I share a birthday, but we aren’t twins. After he calibrated and programmed everything, he told me what he did. He turned it up to 3.20. He said he wanted me to slowly inch it up every week, but said I could go up .20 if I wanted to instead of just .10 per week. When I get to 4 he wants me to stop and stay on that level a good while (meaning a month). If I see no improvement at level 4 after a month or so, I could switch frequencies. I’m on “A” frequency now and he programmed a “B” frequency as well. He said what I’m on right now is only accessing one region of my brain. If I switch to Frequency B, the device will start accessing the region that it previously accessed as well as another region. So, Mom and I have differing remembrances of what Dr. T. told us about this. She thought he described the theory I just gave you. What I thought he said was that Frequency B would access two places on the electrodes in my brain. So, two people, two different understandings of what we heard. If we ever get it right, it’ll be a miracle. ;) Either way, “Frequency B” accesses more of my brain and/or the device than “Frequency A”. He showed me how to do all of this changing frequencies and turning up the device. It was at this point that I (again) started feeling bionic! After he showed me everything, he wanted to see me do it, so I programmed it a few times. At this point, I was still at what he set the device at: 3.20. I asked him if I could turn it up more right then. He said he’s more conservative, but if I wanted to turn it up right then, he’d let me. So, I turned it up to 3.40. Hey, he said I could go up by .20 every week. ;) So that’s where it stands right now: 3.40.
I asked Dr. T. what I should be looking for in regards to feeling anything. He said that my leg and foot muscles should become looser. My foot shouldn't turn in anymore. He said he wanted to see me back in 3 months. When the scheduling coordinator came in to schedule the appointment, she noticed that my 6 month post-op appointment would be in September and 3 months would be in August, so we just decided to wait until the 6 month post-op appointment. She scheduled my return appointment with Dr. T. for Tuesday, September 6, 2016. Not only will I see Dr. T, but also Dr. W. who is the neuro-psychiatrist that I saw pre-surgery and I’ll also have another motor skills test. Dr. W.’s appointment will be 3 hours long. Three hours of testing. Three hours of, “I’m going to give you 10 words to memorize and repeat back to me.” Haha. After the 6 month post-op check-up, I can actually have my case transferred to my Knoxville neurologist and won’t have to keep going to Vanderbilt for appointments. That’ll be nice, but I will miss Dr. T. and Dr. K. (the neurosurgeon) and everyone. I won’t miss the 2 and ½ hour drive though!
Mom and I decided to make this a fun day after the doctor’s appointment. We went to see a play at the Cumberland County Playhouse which is in Crossville, TN (between Nashville and Knoxville). We stopped at McDonald’s for a quick bite to eat. For whatever reason, I was craving their oatmeal. It was at this point that I told Mom maybe I should go back down to 3.20 on the device. She asked why and I said that I felt like my hand was cramping up/drawing up more than usual. But just as soon as I said that, I knew I wouldn't do it. It’s always go big or go home with me. ;) We made it to the 1pm showing of “Southern-Fried Nuptials”. It was a fantastic show!
After the show, we drove back home to Knoxville and met up with some of my mom’s friends and went out to eat at Aubrey’s.
It was definitely a full day, but a great day! I have to thank my mom so much for going with me. I had a great day with her and am blessed that she is willing to go to all these appointments with me. I can’t thank her enough!
I’m still so excited to see what the Lord is going to do in my life. I know that He’s got this and I just have to trust Him.
