Tune-In Tuesday: December 5

Perseverance and Patience.
Calmness and Courage.
Four things I long for; four things I fail at daily!
But it’s OK, because God’s growing me in these areas.

Last Thursday, November 30, I had my appointment with Dr. Tolleson (my neurologist) and he programmed a new frequency in my deep brain stimulation device. Now it’s a game of waiting and testing – perseverance and patience!! I told a co-worker, it was fun at first – this testing different levels of electricity, but now I just want it to work!

The appointment went well. I had to laugh to myself though when the nurse wanted to take my blood pressure. It’s always so high because I stress about getting to appointments on time and I just have a lot of adrenaline running through me. You’d think that after all the doctor visits I’ve been to, I wouldn’t get anxious or worried, but that’s just not the case. Anyway, I told her, “It’s going to be high.” So she decided to wait on taking it and did other things first. It worked!! When she did take it, it was 112 over 58. See, I knew if I had a few minutes just to calm down, it would affect my blood pressure! ;) CALMNESS!

Dr. Tolleson wanted to see me walk. I don’t like this part. For those that see me every day and those that know me really well, you know that I don’t like people watching me walk. I get very self-conscience about it. I know, I know. The whole purpose of me seeing a neurologist in the first place is because I can't walk right. He can’t help me if he can’t see me walk, but it still doesn’t make walking for him (or anyone else) any easier! So I walked for him. He observed that I walk on the outside of my feet. As I was walking, I ran into (not literally!), my old neurologist, Dr. LeForce. Talk about a little awkward. Dr. LeForce is awesome. I loved him as a neurologist, but since my DBS neurologist (Dr. Tolleson) moved to Knoxville and both of them joined the same practice, I had to choose who I’d see. I chose Dr. Tolleson because he can adjust all my settings. Dr. LeForce was great about that though as he was when we “ran into” each other on Thursday. He asked how I was doing and said I looked great (I think all doctor’s are trained to say that, right?!). Then Dr. Tolleson exclaimed, “Oh, right! I totally forgot that you sent her to us in Nashville!” After we talked with Dr. LeForce a little longer, Dr. Tolleson wanted me to walk again for him one more time. As I began, he said, “Now, walk normally.” I burst out laughing and gave him a little eye roll as I turned toward him and exclaimed, “Seriously?!” He started laughing himself when he realized what he had said and exclaimed, “Well, you know what I mean!” A little laughter does the soul good! I told Dr. Tolleson that I feel more comfortable when I walk where I know there’s something to grab ahold of then I do in wide open spaces. I’m extremely stubborn though and won’t use any assistive devices (outside of the DBS) like a walker or cane. He smirked at that, but didn’t tell me I should use them. He said (as he previously had said) that the toe surgery I had definitely set me back. I knew that, but I’m hopeful that it will help in the future.

What I love so much about Dr. Tolleson is that he and I want the same thing: perfection. I know that perfection is unattainable on this earth, but I still want as close as possible to it as I can get. He wants the same thing. We are both type A. He was asking me how walking had been and I said it was OK. He finished my sentence when I said, it’s OK, but I want and he chimed in, “perfection”. When will I ever be satisfied with just OK? Probably never!

Dr. Tolleson was a little surprised that I hadn’t tried Frequency D. I left the frequency as he had set it the last time I saw him which was Frequency B. I admitted that there was a part of me that was afraid to change it. I knew on Frequency B that I could at least get around with minimal to no falls, even if it wasn’t really the way I want to or need to walk. My fear was that if I turned to Frequency D and it didn’t work that when I turned it back to B I’d have to wait at least another two weeks for my body to adjust to it again and there was really only one month between my appointments. So, basically, fear got the best of me in that situation. I did fall twice within a month, but that’s a better record than I’ve had before.

Dr. T. checked all my “leads” to make sure everything was working perfectly. I joked with him that by the time we found the frequency that works for me it would be time to change the battery in the DBS device (it usually has to be changed every 5 years give-or-take as that is its lifespan). He smiled and I said, “that’s usually my luck – I’m just warning you!” At one point while he was programming, he said to let him know if I felt any shocks. I thought he was joking at first, but then he asked if I was seeing any bright lights. I said I wasn’t and wanted to know why he asked me. He said he was right by my optic nerve. Those sorts of things snap me back to reality that yes, indeed he is playing with my brain. He tried one frequency that made my chest feel tight. I think it was just because that’s where the battery for the device is located, but it freaked me out a little. He backed off of that frequency. I asked if anything he did could make me hallucinate. I quickly said, “I’m not hallucinating right now, I just want to know if that's a possibility.” He reassured me that nothing he did could cause hallucinations – whew!

During the appointment, Dr. Tolleson asked if I’d ever had Botox. My answer was yes. The very first neurologist I ever went to told me I had cerebral palsy and said he could fix me right up with Botox. He was astonished that I had no improvement every time I came back to him. He would inject it into different muscles, but nothing ever happened. After months of this, he finally had me get a blood test which revealed I had an antibody towards Botox. It wasn’t until years later when I went to the Mayo Clinic that doctors there told me that he probably caused me to build up an antibody to the Botox by injecting me so much with it. They tried a different strand of Botox, but got the same results: NOTHING. For some reason, Botox doesn’t work for me. Oh well.

I told Dr. Tolleson that when I’m nervous, anxious or excited my dystonia symptoms get worse. He confirmed that that will happen. UGH. If I’m relaxed, I walk so much better.

Dr. Tolleson programmed a new frequency: A and by the time I left, I was already seeing some improvement. As I started to walk down the hall to check-out, Dr. Tolleson asked how it felt and I said that I was just about to tell him that I could see some difference. He smiled and said “fingers crossed”. I’m cautiously optimistic. He says it’ll take at least two weeks to see any real improvement.

So, I patiently persevere while calmly having courage. Wait, who am I kidding? I'm nowhere near that – yet! I’m thankful that I have a God who loves me is spite of my whining and complaining - in spite of me being the opposite of calm or courageous. So I wait and pray and have hope that there WILL be much improvement.

“I know that you can do all things; no purpose of yours can be thwarted” Job 42:2 NIV

God’s Got This!