Next Wednesday is my surgery for Deep Brain Stimulation (DBS) that I’ve been talking about recently. Right now, it seems so surreal that this is about to happen. But happening it is! Hopefully I’ll come out of this a new man, for the better. Otherwise there’s not much point in doing it, is there?
As I’ve mentioned before, I’m planning on doing a daily entry on this blog about my experiences with the surgery and my recovery. Most, if not all, will be video blogs, so you can see the results. I’m planning to start those this coming Monday night, 9/25, and go until at least to 10/10 when I have my first programming session with my neurologist. I’ll go longer if I feel there is more yet to discover about the process. Likewise, on some of those days when I have nothing new to report, I may opt to put up a quick text-based post to that effect so that you’ll know I didn’t forget.
The only day I might find it hard to get a post up is on the day of the surgery. I’ll be in ICU that evening. I have no idea what kind of shape I’ll be in, but if at all possible, I will at least do a text-based post letting everyone know how it went as soon as I’m able to grab and use my phone. If possible, I’ll do a live Facebook feed from my room and get that on the blog once done.
Consequently, in order to establish a baseline from which to compare, I wanted to take some time to list out currently what medications I’m on and what symptoms I’ve experiencing recently that I hope this procedure will alleviate. Then we’ll have an idea how much I’ve been able to reduce my medications and how much my symptoms have improved (or not) over the course of these next 3 weeks.
So, onto the details!
- Levodopa/Carbodopa, 250/25 mg, 4x/day (Main source of additional dopamine)
- Pramipexole (Mirapax), 0,5 mg, 3x/day (A dopamine agonist, prompts dopamine production in the brain)
- TUCDA (Tauroursodeoxycholic Acid), 250 mg, 4x/day (See my recent post on this supplement).
Was taking Selegiline, 5 mg, 2x/day (a MAO-B inhibitor, which allows the dopamine to stick around longer before being taken out with the trash), but discontinued it as it can react with general anesthesia. Plus, I had to be off medication on the day of the surgery, and that one takes around 2 weeks to get out of one’s system. I may not have fully experienced the increase in symptoms yet that stopping this medicine is likely to create. It shouldn’t be drastic, but it does help them.
I’m only going to mention those symptoms that DBS is expected to have an impact. Where it won’t have an impact is in non-motor symptoms, like constipation, voice volume, drooling, lack of smelling ability, sinus drainage, etc., etc., etc.
In general, one of the issues that DBS is expected to resolve is what I would call the symptomatic roller coaster. I generally take the main medicine (levodopa/carbodopa) 4x/day, about 4 hours apart: normally at 8am, 12 noon, 4pm, and 8pm. Once I go to sleep, I don’t need the medication as tremors and arm stiffness take a nap with me. In fact, dopamine can build up some while sleeping, which is why many have their best part of the day in the morning.
During each dose, right now, the cycle goes something like this. 1st hour, waiting for the medication to kick in. For me at this stage, that takes around an hour. Until then, I’m usually dealing with increased symptoms. During hours 2 and 3, I feel my most “normal”. That’s a relative term. It doesn’t mean there are no symptoms, only that they are having minimal impact on me. By the time the third hour is drawing to a close, dyskinesia usually kicks in. This is a side-effect of the medication which causes involuntary movements by causing repetitive contractions of certain muscle groups. In my case it is a wearing off dyskinesia (occurs when the medication begins to lose its effectiveness) as opposed to peak dyskinesia (when the medication is at its strongest). I used to get the latter, but for around a year and a half, it has been the former.
During the 4th hour, the dyskinesia declines and my symptoms increase. It used to be somewhat drastic before I resumed taking the TUCDA, but since then my symptoms during this period are not as strong, but I can still tell a definite shift into more easily tremoring and stiffness in my left arm.
So what are those symptoms?
This was the first symptom I had for PD back in 2012. My muscles clench/tighten uncontrollably in my left arm/hand. When it gets bad, it is painful. When it is moderate, I notice its effects mostly on how smoothly I can move my fingers doing things like typing and a drum roll on a surface. Right now, my medications control that pretty well. Even in my more off-times (first and fourth hours), I’m able to type, just not very fast. My right arm, thankfully, hasn’t been afflicted with this symptom, so far. It is only in my left arm. Back in November of 2014, I went 5 days with no medications. By the 5th day, my left arm was useless, I couldn’t move my fingers much at all, and the pain was starting to get bad. That’s when I ended that little experiment. Now I doubt it would take more than two days to get that bad. I may find out with this surgery, as I’m expected to take my last dose of meds on Tuesday morning, and won’t be able to resume them until after the surgery, sometime late afternoon on Wednesday; so I’ll be off meds for around 1.5 – 1.75 days.
This is the symptom most people associate with Parkinson’s, though there are people with Parkinson’s who don’t have any tremors. For me, a slight tremor was noticeable late 2012, progressed to a bigger problem during 2013, and started showing up in my right arm during 2014. Since then, my right arm has more of a problem with tremors than my left arm. If I’m carrying something like a cup of tea, I’ll usually carry it in my left hand because my right hand can no longer be trusted to keep it from spilling.
During off periods, the tremors vary from minor to big. What usually happens to bring them out bigger is when I attempt to hold a position or something in the air. This occurs, for example, when I’m holding food to eat like a burger, or attempting to move a spoonful of something from one container to another such as mixing a recipe. It becomes very difficult for me to hold a position such as one might do in a yoga class or Tai Chi. I need to mostly be moving to keep the tremors at bay.
I think that is what amazes some people when they watch me play Pickle Ball. My hand and racket can be shaking while I’m waiting for the ball to head my way, but it doesn’t seem to affect my ability to swing or hit an accurate shot. It becomes more of a problem for me, however, when I’m not taking enough medication and my off times are much worse, resulting in slower reactions, smaller movements, less aggressiveness. That’s when I have to very intentionally force myself to swing big and move fast, but I’m fighting my body at that point to do it.
But this is why Parkinson’s tremors are known as resting tremors. That is, when your arms and hands are involved in actively doing something, the tremors (unless they’ve grown to the point they overpower you) are minimal to non-existent. It’s when your arms are still or attempting to hold a position, that the tremors most fully happen. It is the opposite of people with essential tremors. Resting, their hand is still. Try to write, and the tremors kick in.
But even when my medication is fully active and helping me to feel normal, if I tried to hold a Tai Chi position, it wouldn’t be long before I’d be shaking like a leaf in the wind. So one way I’ll know if DBS is helping is whether or not I will be able to hold a position without shaking.
Overall, my gait isn’t too bad for someone five years into this disease. Part of that is that I started a little earlier than most. People, as a rule, who start showing signs of Parkinson’s early in life, like in their 30s & 40s, or earlier, progress much slower. For many of them, they don’t even get to my stage of PD for several years. Someone who started in their 60s or 70s, however, will tend to progress much faster. So I’m kind of in the middle of that scale. Most PD patients start in their 60s or later.
But I certainly think by now my gait would be more of an issue than it is if it wasn’t for all the exercise I do. Especially Zumba, which helps me to do big movements in an intensive manner. Before I started exercising, my walking was very plodding and I had a bit of a limp. Now I usually look pretty normal when I walk unless my medication are in a significant off-time. As a matter of fact, though I can’t prove it, I expect if I hadn’t been exercising these last 2.5 years, I’d probably be in stage 3 by now, when I would experience freezing and at a much greater chance of falling.
That said, there is room for improvement. If DBS can reduce or eliminate my off times or their intensity, I won’t be walking like Frankenstein at certain times of the day.
Like gait, my balance has been affected, but it is not as bad as it would be, thanks to exercise. But I can tell it isn’t as good as it was before PD. When I dry off from a shower, I’ve always stood on one leg while I dried off the other down to the foot. Since getting PD, that has become progressively harder. But I consider it both a measure on how my balance is doing as well as practice in training my muscles to keep my balance. So if I’m more able to stand on one leg while drying off the other after this surgery, I will know it’s helping that symptom.
When my medication is in an off state, I tend to stoop forward. My head wants to bend down. It can take a lot of effort to raise my head up when that happens. The time I notice this most often is when brushing my teeth at night. Usually by the time I do that, the last dose of the day has already worn off. It can be a struggle to keep my head pointed forward enough so that the toothpaste and saliva stay in my mouth. If I can reduce my medications enough thanks to DBS, I shouldn’t have that problem.
This isn’t a symptom of PD, as I described earlier, but a side-effect of the medications I’m taking to deal with the PD symptoms. But it is my expectation and hope that I’ll either be able to totally get off my medications or at least greatly reduce the amount I take, which would result in not getting enough of it to cause dyskinesia. That alone would be a great blessing. It will be like staying in the sweet spot all day instead of 6-8 hours out of each day. Get me off this roller coaster!
Those are the main symptoms I’m expecting DBS to “fix” at least for the next few years. It doesn’t slow the train down any, but will hopefully deal with the symptoms more effectively than my medication are currently able to do, so that I can have a few more years of productive life.
I thank each of you for your prayers and support!