Tuesday, February 26, 2019

Tune-in-Tuesday: February 26, 2019


I forgot to mention in my last post that my mom has started taking yoga. I like to think it's because I inspired her to do it, but that's probably not why. ;) She had a free pass and I had the day off of work on President's Day, so I went with her. It was fun. It was my first class experience (opposed to my one-on-one sessions) and I was able to keep up and not fall over! Then the very next day I had my one-on-one session with my yoga instructor. It was a great week for yoga!

The week in general was a mixed bag of good walking days and then not-so-good walking days. It just is what it is and I have to learn (or keep learning) to deal with it as it comes.

This post will be short as I don't really have any updates or "breaking news" to share. I hope everyone is having a great week.


Always remember, God's Got This!

Tuesday, February 19, 2019

Tune-In-Tuesday: February 19, 2019 - 3 YEARS (almost!)


On February 23, it will be 3 years since I had awake brain surgery (deep brain stimulation) for dystonia - 3 YEARS?! How is that even possible?! For those that are new here, I thought I'd include the link to the post I wrote (with one hand!) about it:  February 23, 2016

As for the present, there's really no new updates. I had a pretty good week last week. Oh, I had my issues, but nothing near as bad as a couple of weeks ago, for which I am ever thankful for. I do tend to find that the less I focus on myself and the more I focus on others, the less issues I have walking. Funny how that works, right?!



And in ALL things, remember...God's Got This!!

Tuesday, February 12, 2019

Tune-In-Tuesday: February 12, 2019


I remember when I was a child finding out what my blood type is. I saw it written on a form my mom had to fill out for something. I couldn’t help but exclaim, “Hey Mom, I got an A+ on my blood!”. She laughed and corrected me saying that my blood type is A positive. It’s one of the only things in life that I’ve gotten an A+ on. That and I’m a type A personality, if that counts – ha! 😊

In last week’s blog post, I was debating on whether to try a new frequency in my DBS system or wait it out another week on Frequency A. Well, right before bed Tuesday night, I decided to try another frequency. Guess what?! I didn’t even have to dig out the manual to figure out how to do it – I remembered it on my own! I changed it to Frequency D. When I switched it over, I noticed that the voltage was at 3.30. Since I was on 3.10 volts on Frequency A, I decided to dial it back to 3.10 on Frequency D.
Then I went to bed. I’ve found from past experiences it’s better for me to adjust the electricity at night and give it time to start working while I sleep. 😉 I don’t know if this is a scientifically proven method of doing things, but hey – it works for me! When I woke up on Wednesday, I wasn’t walking as great as I had hoped, and my arm and hand were having issues (I couldn’t grip well and kept dropping things.). I then switched it to 3.20 volts and then back up to 3.30, but by the time I was ready to leave for work, I felt like I needed to turn it back down to 3.10, so I did. Then I left for work. I almost fell when I got in to work but decided to give the level a try. However, after lunch, I decided to go back to 3.30. I was having issues – major issues – getting around.

I left it on Frequency D at 3.30 volts until Friday morning. By the time Friday rolled around, I had had enough. I couldn’t wait any longer. Wednesday and Thursday were really tough days. My walking on those two days reminded me of my worst days. I tried to give it more time to work, but weighing the options, I decided to act and not be miserable any more. At first, I just dialed the voltage back from 3.30 to 3.10, but within a few minutes of doing that, I decided to go ahead and switch frequencies entirely. I went back to Frequency A (which notoriously has been my go-to frequency), but instead of going back to 3.10 volts as I was on before, I decided to go up to 3.20 volts.

Now, not only do I have A+ blood, and am a type A personality, but now I have Frequency A electricity in my brain. 😉


It’s an amazing, weird, kind-of-freaky feeling changing frequencies and volts. I can feel it. It’s hard to describe, but it’s almost like a release of a muscle. Or, if I turn the voltage up, it’s like a contraction of a muscle. It’s so hard to explain. I know I don’t give it justice. It’s quite the experience, to say the least.

I still marvel at it. A man-made device distributes electricity to just the right area of my brain to make me walk. Amazing.

Just as an FYI, the different frequencies I'm referring to are different areas of the brain that are being stimulated. There are between 10 and 20 different places that were stimulated in my brain at the point of the awake surgery. They were stimulated, but are not "on" unless my neurologist turns them on via remote control. The frequencies act differently according to which area of my brain they are in. Frequency A is "on" all the time. I'm not exactly sure which part of my brain it's stimulating - I would need to ask Dr. T. that question, but whatever part it is, it seems to work the best. Frequency D, while it's "on" all the time as well, vacillates between Frequency A and Frequency B so it mixes the two frequencies. Again - the whole process, all the frequencies and electricity stimulation - it all leaves me in awe.

Since Friday, walking has gotten substantially easier. I’m still having problems, but not as many as I had on Frequency D. Now, I need to retrain my brain not to get anxious when walking in front of people. I thought I had gotten past that part, but maybe it was just taking a hiatus, because it’s back in full swing now. I clam up when I know people are watching me. But this too shall pass, right?!


I have to say the one and probably the only thing I love about having issues walking is it brings me so much closer to God. I’m in constant contact with him. I plead with him not to let me fall. I thank him when I don’t fall. If I do fall, I thank him I’m not hurt worse than I am. Sometimes it’s a formal prayer with a “Dear Lord" and "Amen” and other times it’s “Help!”. God never fails. I don’t know why He’s allowed me to have these issues with walking, but I know His plan is perfect.


Always remember, "God's Got This!"

Tuesday, February 5, 2019

Tune-In-Tuesday: February 5, 2019

I’m not going to lie – this past week has been tough walking-wise. I know why too. It’s a trifecta of stress, changes in weather and that time of the month (sorry, that may be too much information, but it’s the truth!). I have struggled majorly. It really culminated starting Thursday and continues today. It’s frustrating, annoying and tiring - oh so tiring. But, I’m whining now, so I’ll stop!

Yoga continues to be a source of healing and a huge stress reliever. I feel so much better after doing it. I seem to walk better too – although not all the time. There are times I’m all over the place with yoga. I can’t balance, I fall over, but the one constant is that my instructor encourages me and pulls out my strengths. I am pretty sure that 99.9% of why I like yoga so much is because of my instructor. She is a blessing!

Another stress-reliever this week was the Puppy Bowl at work! Adoptable dogs from our local Humane Society were brought in for us to love on. One dog particularly stole my heart. His name is Jonathan. I was “this close” to adopting him before I found out he was already spoken for. It was purely an emotional response that I had and I’m so glad he had already been claimed! But I got my “puppy fix” and stress just melted away. This pic is NOT of me with Jonathan, but another little pup who’s name escapes me at the moment.


This pup was interested in licking the bottom of my shoe. It was the only time I could get a picture of him standing still!


I’ve been blessed with help when I’ve needed it the most. God hasn’t failed me yet. Although my dad would love for me to use a cane on hard days, my stubborn self won’t use it for fear of becoming dependent on it again. However, God has provided in the form of people. I was struggling a lot on Sunday and was worried I wouldn’t make it into church without falling and then God provided a person to help me in. Thank you, Gary. 😊

I found some great quotes/sayings this past week. OK, I didn’t find them – I stole them from friends on Facebook, but I love their messages:




I’m still at a standstill on what to do next about the DBS electricity. My gut says to wait another week on the level that I’m on – that this is just a hiccup – and things will get better. But then part of me wants to try the next step – switching to a new frequency (Group D) and trying that. What to do, what to do?!… I may even change it tonight. No one's ever accused me of having an excess of patience - ha! It's already been 2 and 1/2 weeks, so I've given it enough time to "do its thing". But, since I'm actually changing frequencies it's a little more involved. And by that I mean, I'll have to dig the manual out with the instructions on how to do it. I'll guess you'll have to read next week's blog to find out what I did.

This Bible verse was originally on the desktop calendar that my grandmother gave me for Christmas:


But then I looked it up in the NIV I like their translation better:


It gave me strength and made me stop and remember: God’s Got This!