I'm back!!!!!!!! Haha. I took an almost 5-month sabbatical from updating this blog partly because life got really busy (but when is it not?!) and partly because I really had no significant updates to post about. As much as I'm "out there" in these posts, after I post a new blog, I get somewhat embarrassed at times about what I've shared (even though it's the truth). It is much easier for me to share in written word then face-to-face (again, I get shy and introverted). So, I just needed a little break, but today I feel like writing and sharing, so I'll update you on what's been going on with me.
The past 5 months have been rough. If you've seen me face-to-face in real life you know I've been using my walker and cane almost always. I don't know what happened, but ever since my last (deep brain stimulation) battery-replacement surgery (which was in January 2021), I've never regained the walking ability I had been experiencing before that battery started dying. Half of me thinks it's my fault for not pushing myself as hard as I had been - pushing myself to be brave and walk. When I use the walker, I don't have to think about walking at all, I walk like a normal person would. When I use the cane, I think about walking a little more. When I walk unassisted, my brain is in over-drive, and I have to put all my concentration into walking without falling. So, I equate (in my messed up, imperfect brain) using the walker with laziness. No one's ever told me that or put that thought in my head except for myself (so I have no one to blame but myself - ha!). In fact, most people want me to walk with the walker (if I feel like I need to) to keep from falling (at least in wide open spaces like parking lots where I tend to fall a lot). In my brain, I feel like since I had the deep brain stimulation surgery, if I use the walker or cane, I'm a failure. Have I told ya'll before I'm a very black and white person?! There's no middle ground with me - I'm either all in or all out. ;)
Since my last post (way back in September 2021) I have not changed any of the settings on my deep brain stimulation device. I've needed to, I just haven't. I got tired of "playing" with the settings trying to find the "sweet spot". I just threw the towel in so to speak and kept it where it was. Pretty much the only places I don't use a walker or a cane are at my house, my parent's house or at yoga. :) BUT - I'm feeling inspired again to work on walking without any assistance.
I saw my neurologist this past Thursday (February 10). This is probably where my inspiration to work at walking unassisted again came from. I used a cane to get into his office, but I probably should have used the walker. :) This is so me, but so weird too: I don't mind using the walker anywhere else, but when it comes to walking into the neurologist's office, I don't want to use it. I don't even want to use a cane, but this time I had to. It's like I want to impress him or make him proud or something. But at the same time, I do want to show him exactly how bad it is so we (he) can fix it. Sometimes, I wonder if he can read my mind. I mean he can give me more (or less) electricity - haha. But in reality, he probably really knows all the questions to ask to get the answers he needs because he point-blank just asked if I was using the walker a lot. I told him I was. After doing all the neuro exams (you know, "tap your fingers"...) he wanted to see me walk. This is my least favorite part of the appointment but the one that tells him the most. I got up and didn't take my cane. He asked if I needed it and I said I wanted him to see me walk without it. He said, "This is a no-fall clinic. We're at a 100% with no one falling here, so you're not allowed to fall." He made me laugh! He watched me take a few steps and then he ended the walking portion of the exam. ;) He could tell I was/am really struggling. When he asked if I had changed any of the settings in the deep brain stimulation device, I told him I had slept since then and really couldn't remember. He checked and reminded me that I did switch from Group D back to my favorite, Group A after only a month of being on Group D. But after that switch, I hadn't made any other adjustments. He asked why I switched, and I told him that I really couldn't remember but it must have been because I was having a harder time on it. I told him I was tired of "playing" with the settings and he said he completely understood. He asked if I had ever tried Botox. I told him I had, but it had been years (way before seeing him). The very first neurologist that I ever saw when I first started having symptoms gave me Botox, but it never worked on me. Come to find out, I had built up an immunity to it. I only found this out after that first neurologist tested my blood for it. Years later, when I went to the Mayo Clinic, they told me that it was probably that neurologist who caused me to build up an immunity by injecting the Botox too often. I think the standard (or at least it was back then) is to inject it every 3 months. Anyway, I learned from the Mayo Clinic that there are different strands of Botox that can be used. So, let's say that first neurologist injected me with strand A, the Mayo Clinic used strand B. Anyway, back to current day: Dr. T. said that he'd like to try it (again) on me. He said he could inject it into a couple of different places (my foot, my hamstring) because they were all extremely tight, but that he would probably just do the foot first. The downside to having Botox is that it will make everything loose (which is the point), but it may make walking harder for me - we just have to see. If it's the curling of my foot inward that is causing me to have difficulty walking, then Botox will help a lot, but if it's weakness, then it will do more harm than good. Again, it's all a test and see sort of experiment. The good (or bad) thing about Botox is it wears off in three months - so if it makes my walking worse, then in three months I'll be back to my normal. That could also be a bad thing, because if it does work, then it will only be for three months, and I'll have to keep getting Botox injections. I have to get (better yet, Dr. T.'s office will do it for me) insurance pre-approval first, but we went ahead and set the appointment for April 13 (the soonest he had available). I asked if he was going to do it (give me the injection) and he said yes. ;) There's something in knowing a doctor you trust will do it instead of someone you've never met. I'm hoping between the deep brain stimulator, the medication I'm on and the Botox, that it'll all work together and get me back on my feet.
For the most part, I try to stay upbeat about my situation, but don't get me wrong there are days or seasons when I'm just frustrated and sad about the whole situation. I told my yoga instructor on Friday that I don't really even remember anymore what life was like before dystonia, when I could run free! It's been 16 years since I first started having symptoms. There are times when I watch people walk in parking lots without a care in the world (walking-wise at least). They run in and out of stores without a second thought. That's not me. I strategically look for a parking spot that's near a shopping cart. If there aren't any, I've been known to just leave (although that was a long time ago! I usually will either find a spot or just end up taking my walker in now). It's a reminder to me to not take for granted what I do have. I can get around - thank Jesus! I can walk. I can move. It's just different. Even now, after 6 years (it's coming up on the anniversaries of my deep brain stimulation surgeries this month), I would completely have DBS surgery all over again. Yes, even with the problems I'm still experiencing today. You won't know if something works if you don't try that something. There are those out there that go skydiving or rock climbing to push themselves out of their comfort zones and then there's me - I try different medical procedures to keep pushing towards a "cure". As I told my neurologist on Thursday, "I want perfection. I know, I'll never get it, but I still want it." He (my neurologist) and I are a lot alike in the sense that he wants perfection too. He wants his patients to get better. He's in his patient's corner always and isn't afraid to try everything to get them well. That's got to be hard, because in a lot of the diseases he sees in his patients on a daily basis, there is no cure (yet!), but there's always hope, right? Yes, there's always, always hope.
I told Dr. T. that I think this pandemic we're in has affected my walking negatively. I'm not walking as much as I was pre-pandemic. But hasn't this pandemic done a lot to all of us, just in different ways? So, I can't put full blame on that. In fact, I can't put blame on anything - it just is what it is!
So, now you're as up to date as you can possibly be! Thanks for reading!
As always - God's Got This!!
