I’m trying to figure out the best way to get relief on my left side, the side that we did not stimulate. All roads keep leading back to doing a second surgery.
My right side is doing pretty well overall, with increasingly frequent breakthrough tremors happening during off periods. But the left side now feels like my right side did before DBS.
Mornings used to be my best time of day, probably because of the amantadine (it has a stimulating effect, so I take it morning and noon so it won’t interfere with sleep). The left side tremor reappears more quickly during the wear-off period, and it’s far more intense. The stiffness and rigidity has made a dramatic reappearance.
It seems as if the Parkinson’s is fighting back against the stimulator, that it is adapting to the device as if it were one of those antibiotic-resistant bacteria. I never expected a cure or a slowdown, but this relentless progression is a little worrisome. Maybe it’s stress.
I’ll have a stimulator adjustment in about a month, which ought to bring some relief to te right side. We will probably run through the medication options, too. But I’ve been through the mill with meds, though, and I don’t like the way they affect my thinking (I’m already borderline with OCD issues at current dose of mirapex) or my body (the dyskinesias that accompany levodopa/carbidopa).
My second session of device tuning opened with Dr. Boyd asking when I would get the left side done. My last office consult with Dr. Coffey opened with him asking what it would take for me to get the left side done. With the right side, I just knew when it was time. Now I know it’s time for the left.
I can see a pattern emerging in the device tuning process and aftermath: Initial results are encouraging, but after a week or so some of the unwanted side effects start to edge their way back into the right side arm and leg.
It’s still a good thing, having this hardware in my head. The process feels more like I’m taking two steps forward, then a slow half step back. My right arm is not nearly as sore as it was, although the latent muscle tension is still there. The dystonia in that arm is creeping back. My right knee is tracking better, but not quite as well as the day of the adjustment.
The left side continues to be an issue. Meds control it for about half the day; the other half ranges from mildly uncomfortable to completely unusable, cramped and painful. Surgery within the year? It’s likely.
Almost two days since the device was last tuned, and the improvements to my right side functions are still accruing. The constant muscle tension is abating, even in places I hadn’t expected (like my neck). Posture, gait are doing nicely, right leg tension is easing, and right forearm is steadily releasing as well. What a relief!
Yes, the last time I saw the doctor was in February. Time flies. I’m happy to report a potentially really good session was had on short notice this afternoon. Continue reading
Maybe it’s the change of weather. Maybe it’s a new stability in my medication regime. But I’ve been enjoying a return of my motivation levels, and with it, a new level of contentment. Continue reading
I have to remember to be more patient when it comes to tinkering with my brain chemistry.
After years of riding along at the same medicine levels (more or less), it’s got to take some time getting used to a 70 percent drop in levodopa levels. Levodopa is basically dopamine, replacing that vital substance that is no longer made in my brain.
The latest round changed the formulation, the way the l-dopa and a complimentary drug are manufactured. The switch was a struggle, but I think I’m coming out of it now, a good two weeks later. (I think the switch also disrupted my sleep; last night was a good one, and I feel rested this morning.)
I’m not sure how many tricks we have left in our pharmacological sleeve. I tried bumping up one of my medicines, which is very effective against tremor. I’m cleared to take up to three mg’s a day, but I’m currently taking just a half mg, because of the side effects. I tried adding a half of an mg to my midday package and … the side effects were profound. Yes, the tremor was calmed. But this stuff (cogentin, aka benztropine) really whacks my cognition and left me reeling for a couple of hours.
I definitely plan to talk with the doctor about this one. I don’t think he’s a big fan of this particular drug. I could suck it up and just take it, knowing that I will eventually adjust, like I always do.
But it is remarkable how I was able to function at all when I was regularly taking up to 2 mg per day of this stuff. Given time, the brain will adjust to these changes by defining a new “normal” state. Makes me wonder anew just what exactly it means to be “normal” when it is so easy to shift consciousness with drugs (or religion, or other environmental factors). I don’t need a psychiatrist so much as I need a philosopher!
My third tuning session, back on February 11, hasn’t scored as high on the relief scale as the first two. I’m doing pretty good generally, but I’m struggling a bit more than usual.
First the good news: Most of the unwanted muscle movement on my right side is now gone. That means my right leg no longer rotates uncomfortably inward, and that results in less stress on the knee when lunging and squatting. The similar problem in my right shoulder has also been helped. The unwanted motion in my arm was causing tennis elbow, of all things, but it was responding to physical therapy.
Ron Alterman, neurosurgeon at Mt Sinai Medical Center in New York, performed a DBS procedure live on national TV yesterday on “The Today Show.” I don’t have a TV. I hope he didn’t mess up! Here is a link.
It’s been about a week and a half since I brought myself in for the second tune-up. So far, the unwanted movement in my right arm and leg (aka dyskinesia) is greatly reduced — and all we did was turn the power down a tiny bit, from 2.5 volts to 2.3. That’s it. (Except for a tiny bump up on one of the meds.)
Now my right knee is starting to “track” properly when I move it at the gym — when I squat, it lines up over my right foot, instead of trying to corkscrew toward my left ankle. Better balance while walking, too.
My right arm is really sore, especially at the distal (closer to hand) end of the bicep. What’s telling is that the soreness is most pronounced only when I take a full 25/100 tab of levodopa (the drug that relieves the tremor but causes dyskinesia). So I am now left with a choice: stay at the current level, or drop the dosage and get relief in the right arm, but risk an uptick in tremor in the left arm.
Now you’re probably thinking, Isn’t Parkinson’s fun? No, not a bit. But it’s getting easier to ignore it, and hopefully I can continue to do so for a while.
And about that study that showed an average 10-pound gain in weight in the first year post-DBS? I’m now averaging just below 160, a gain of maybe 2-3 pounds, no effect on waist size, so at least it’s all muscle. BMI=22, with body fat percentage still well below 10. Wahoo!