It's been a really long time - as in July 27 - since I've updated this blog. I've tried updating - once on August 3 and again on August 14 - but I kept getting distracted and "not feeling like updating" and life has just rolled on! So now, Labor Day, I'm getting a second or two to actually sit down and write an update. I'll include the "mini" updates I started on both 8/3 and 8/14 and get you as up-to-date as possible.
August 3 update: It's been a week and two days since I adjusted by deep brain stimulation system back to 3.60 volts on Frequency A and I'm still waiting on it work. ;) I've seen subtle changes, but nothing dramatic and I'm still using a cane or walker at times to get around.
I see my neurologist again on August 12 for my normal 6 month check-up, so maybe he can suggest something to make my walking better. I'm already thinking I may need to play with the frequencies. There are many other frequencies that he has programmed into my device (and brain). I've been playing with the voltage, but not the frequency. Adjusting the frequency I think would be my next move, but I'll discuss it with him. I'm not sure why since my last surgery, in January 2021, I've not bounced back like I have with the other surgeries. The surgery was only to replace my battery. I'm a little concerned that I'm becoming too reliant on the cane (and in some cases the walker). I mean, yes, I do not want to fall, but I also want to be able to walk without a cane and/or a walker. There are many factors in play that can effect my ability to walk. Some of those factors are stress, excitement (good or bad), the weather, when I take medication, etc. But, all of those factors are just normal, every day outside factors and I walked without a cane or walker before with all of those factors, so I'm a little discouraged. However, whenever I look back over my week or my month or my year, my memories don't contain the thoughts that I had to walk with a cane or walker. God is good like that! Our brains are able to filter out the bad (for the most part) and focus on the good things!
August 14 update: I had a doctor's appointment with my neurologist on August 12. I told him how much I've been struggling. It seems ever since I've had the battery changed, I've had issues. The battery is fine. It's charged and working. Dr. T. saw me walk (the thing I hate most - people watching me walk!). He observed that I was indeed struggling more. Neither of us know why really. He checked all my DBS settings and everything is working as it should be. He remarked that I was on the same level of electricity he had put me on the last time I saw him. I told him that I am, but I did play around with it at times. The higher I go up in the electricity, the more issues I have with pulling and cramping - especially in my hand. The lower I go the more problems I have with spasms and no control. So...what to do, what to do? We decided together to try a different group (I've been calling it frequency, but maybe that's not the right term for it). I've been on Group A for as long as I can remember, but we decided to switch me over to Group D. I just spent a good amount of time (today, Sept 6) looking back through some of my blog posts to see when I was last on Group D and I didn't find it. :) I've been on Group A since at least 8/19/2018, was on Group B on 10/10/2017 and was on Group C on 5/30/2017. I got tired of looking to see when I was on Group D - haha. Suffice it to say, it's been awhile (if ever?)! Anyway, both Dr. T. and I decided to try Group D. As he was flipping me from A to D he said, " You might feel a shock." Gosh, that never gets old and for some reason, I never remember that that could be an option. I mean it is electricity we are dealing with here. BUT, thankfully (to date), I've never felt a shock when the doctor (or even when I) adjust anything, only a slight pull. Dr. T. talked about doing physical therapy. He had his on-site physical therapist come in and speak with me. We arranged for me to do physical therapy, but in the end (a couple of weeks later), I opted to post-pone physical therapy because of insurance changes that I'm going through. The physical therapist at Dr. T.'s office said that there is this splint (for lack of a better word) that is made that can be put right in the middle of my foot that can provide pressure and my applying pressure relieve some of the tension in my foot. I am not describing this well at all - sorry! When she mimicked what the device would do, my foot instantly relaxed - like magic! It's not fool-proof, but it would help. She (the physical therapist) also watched me walk and she said that my gait was not bad at all. I was picking up and putting down my foot correctly, so why can't I walk "perfectly"?!?! It's so frustrating!!! Dr. T. asked if I had been under any stress lately because he remembered that stress highly effects how I walk. And, my answer was yes. I haven't talked about this in the blog, but in December 2020, I lost my job. My entire department was eliminated. It wasn't anything we had done wrong it was purely a business decision that was made and we unfortunately were the recipients of bad news. But so many people were (are) effected by unemployment because of the pandemic or other issues that I felt no need to harbor any resentment or hard feelings. Yes, of course, I mourned the loss of a job I had been at for 15 years and that I loved so deeply, but I also treasured the memories I made at that job and the people who became like family. The only thing I knew to do was trust in the Lord and apply like crazy for jobs. However, finding a job in a pandemic is not an easy task! Thankfully, I was so blessed with a 6 month severance package from my job. The 6 months ran out at the end of June and June and July were just a tad bit stressful knowing that I really, really, really had to find a job, but then God showed up. OK, He was with me all along, but I just love how He works. When we think he is being silent or not hearing our cries, He's actually working behind the scenes preparing us for what we couldn't even imagine. Out of the blue a former co-worker (at the company I was laid off from back in December) reached out and asked if I was still looking for a job. She was going to have an opening on her team and would I be interested? YES, 1,000 times, I would be interested!! So I had a Zoom interview and was offered the job working with people I knew doing what I love at the place I love. I started on August 9. I'm working through a temp agency for a year but praying that I can be hired back "officially" through the company. Anyway....all that to say that even though I really had a great 8 months "off" of work with many special things taking place, always in the back of mind I was stressed about not having a job and that in turn effected my walking. So, Dr. T. put me on Group D and on I went.
September 6 update: I saw Dr. T. on August 12. On August 15, I fell. The "funny" thing about that fall was that as I was being helped and that still didn't stop me from falling. As I was sitting on the concrete after my fall, I didn't even attempt to hop right back up. Instead, I reached over to my purse and pulled out a band-aid right there and then and bandaged my knee up - right where I fell! My mom commented that at least I come prepared! If you were to look inside my purse, you would see band-aids of all shapes and sizes. Some people carry make-up, some people carry money, I carry band-aids!! ;) Fast forward one week to August 22 and I fall again. This time it's not so bad, but it does cause me to bleed again. August 26 marked two weeks since Dr. T. had changed the Group I was on. I made it two weeks, but nothing changed for the better. I finally decided on August 28 to change the settings. When I looked at the remote for my DBS system, I saw that not only had Dr. T. switched me from Group A to Group D he switched the the voltage from 3.60 to 3.10. Maybe that's why I was falling so much? I went from 3.60 to 3.10. But then again maybe not. As I understand it, in changing the Group that I'm in, it's stimulating a different part of my brain. It's actually quite fascinating to me. Group A has its part of the brain, Group B has its part, Group C has its part and Group D has its part. The electricity is now running through a different part of my brain. I decided to stay on Group D a little bit longer. Maybe it needs more than 2 weeks to work! I did however, change the voltage from 3.10 to 2.80. So, I went down. Don't ask me how I came to the conclusion to go down, I just did! It's only been 1 week and a couple of days since changing the voltage, but today I couldn't wait any longer. My foot has been curling in (like it did pre-DBS surgery) and I felt like I needed more, but I was cautious too. I only went up to 2.90 on Group D. We'll see if that makes any difference. If not, I'll "play" more and I can always go back to Group A if nothing on Group D helps. One thing I don't like is that I have to wait at least two weeks to see if anything good happens because of where the dystonia is in me (in my leg and foot). Dr. T. even brought that up again at my appointment. Some people can get instant results from adjusting their DBS system but I have to go and be "special"! I know I should have waited another week on 2.80 volts, but impatience got the best of me and Dr. T. has always said that if I feel like I can't wait two weeks to adjust it, then I should adjust it how I think will serve me better. So I adjusted. ;)
And now, you are caught up. It feels good for me to document everything and get caught up as well. While at times, I feel like I have reverted back to pre-DBS walking, I know that I haven't. I will get past this rough patch and I will walk without a walker or cane again. I will. But for now, I'll rely on the gifts given to me to help me through the rough spots. As much as I despise having to use them, I'm very thankful to have them. To use a walker or cane is not defeat, it's help along the way.
Thank you for reading and for being cheerleaders along the way. All of you are blessings to me from God. And on that note,
Always remember...God's Got This!
