June 10 was my last update. Since then, I moved into a new decade of life. June 12 saw me turning 40. Yes, 40. If we're blessed enough, it happens to us all - we get old. I think I've felt like I was 40 since I was 25 (when all this dystonia and walking problems began), but now I'm officially 40. I'm not sure how that happened so quickly. My dad was 40 when we moved to Tennessee and now, now I'm 40. Sheesh. I love, love, love birthdays and my 40th was amazing (pandemic and all). My family made sure I was celebrated well.
Since June 10, when I saw my neurologist, I've gone up and down in the amount of electricity I've "given" myself. (I never know how to really write or articulate that sentence. It almost sounds like I'm electricuting myself or something.) Here's a little timeline (thanks to me taking a picture every time I adjusted the electricity):
June 10: Dr. T. raised the electricity to 3.30 volts on Frequency A.
June 27: I rasied it to 3.40 volts continuing on Frequency A.
And then, I waited. It wasn't that walking was necessarily great. It was more that I didn't want to mess with anything. A.K.A: Laziness on my part. It's not (as) fun anymore to play with the electricity, so I just let it be for awhile.
August 11: I adjusted the levels again and went up to 3.50 volts on Frequency A.
September 7: I raised it again to 3.60 volts on Frequency A.
September 9: I decreased the electricity back down to 3.50 volts on Frequency A because I felt like I had too much electricity.
September 15: I was still having major problems (I was consistently falling), so I took myself down to 3.40 volts on Frequency A.
September 28: I decided to go full-throttle and raise the electricity to 3.70 volts on Frequency A. Instantly (and I do mean instantly!), my hand freaked out and curled under. That is a major sign that I went too high, too fast, so I adjusted the electricity and landed on 3.50 volts on Frequency A.
October 9: I raised it 3.60 volts on Frequency A
October 17 (today): I'm still holding steady (or maybe not-so-steady) at 3.60 volts of Frequency A
What does it feel like to have too much or too little electricity? I'll try to explain!
Too much electricity: My muscles tighten up, my leg gets really stiff, my hand curls under or spasms, I fall a lot. Fun fact: sometimes when I fall it actually "helps" my muscles loosen up. I don't think that's a scientific fact at all, so don't test it, but sometimes it does actually help me to fall. Another fun fact: my left arm and hand were effected by the deep brain stimulation. I actually lost all use of them for several weeks after the surgery. I could feel them, I just couldn't move them. I eventually got all movement back in them once the swelling from the surgery went away. But, they have now become my meter on how to tell if I have too much or too little electricity.
Too little electricity: My muscles are too loose (floppy? I don't know how to accurately describe this - they feel like jello). My leg spasms. My muscles twitch. I feel like I don't have any control over my leg and foot. I fall a lot. My hand and arm are normal. ;)
A friend told me on Wednesday night that he thought I was walking better. Maybe I am, maybe I'm not. Some days are definitely better then others. Shoes also effect the way I walk. The more supportive - the better I walk. Surfaces effect the way I walk. I walk almost perfectly on sand. Thick carpet, thick grass - excellent places for me to walk. Hard surfaces, concrete, hardwood - not so great for me to walk on.
Anyway, since I've written a book here, but simultaneously caught us all up on my ups and downs with electricity in my brain, I'll close for now. I will update more frequently, I promise. It might not be weekly, but it will definitely be more than every 4 months.
Always remember, God's Got This!
