What’s it like to get some relief? Pure bliss.

Thank you to all the well-wishers for your positive comments during the last couple of weeks. It all makes a difference.

A friend asked on the Facebook page: What is the difference like (now that the battery has been replaced)? Well, here’s one way to think of it. Make a loose fist with your left hand, and shake it as hard as you can back and forth. OK, harder now, until your shoulder aches. Do this for two hours, then … stop. That’s what relief feels like! Bliss.

It took about two weeks, but I did eventually find a medication level that alleviated the tremor. As well as that worked, the deep brain stimulators are vastly more effective — the tremor control is continuous (no gaps between doses). I am very lucky to have access to this kind of system, and even more fortunate that it works so well.

The new device comes with an improved battery management system, so we ought to get about two years of useful life out of it. And we’ll get more warning before it shuts off.

Back to life! Hard to take it for granted after that episode.

New battery coming for Friday

Confirmed today: I have a dead battery in the unit that controls my left side. It has some juice left, but my doctor’s control unit tells us the battery status is  “EOL” (end of life). I guess that’s better than SOL.

A new unit will be installed Friday morning. It’s an outpatient procedure that ought to be complete in time for lunch. The unit will be turned on and programmed the same day. The new battery/pulse generator will allow me to adjust some of the settings, which means fewer trips to the doctor for fine tuning.

Recap: I have two units installed, one in each side of my brain. The unit controlling my right side is fine. Its modest power draw will allow the battery to run another year or two (4-5 years total). However, we need to really crank up the current on the other side to get a similar result. At those levels, we can expect the battery to last a little more than a year.

Pre-op physical Thursday afternoon. I’m getting better with timing the meds at the new levels, but I also have to radically modify my diet. Protein (esp.  dairy and meat) interferes with update of the medicine. Add in the recent heat and humidity, and just maybe I’ll lose a few more pounds to boot.

Battery running out?

Over the past three weeks, I’ve had a gradually increasing tremor in my left arm. The tremor is now incapacitating. I had a deep brain stimulator installed to control that side in February 2011, and now it seems the battery is running out of juice.

On Monday, we’re headed to Burlington to confirm this with the neurologist — he was on vacation last week. If I need a new battery, we’ll schedule the required surgery asap. It shouldn’t be a huge deal, because we’re only changing out the unit in my chest. It’s like an hour long, under general anesthesia. Same day, in and out. I’ll let you know the schedule as it becomes known.

In the meantime, it’s been a rough ride this last week. The tremor is actually worse than it was before the DBS procedure, because my total load of medicine has been vastly reduced in recent months. I can increase only one drug, levodopa, fast enough to make any difference this week, and I’ve had to more than double the dose to get any meaningful effect. (The other drugs need to be brought up very slowly, like six weeks to reach a significant dosage.) My device controller says there is battery, but not how much; there is no difference in my tremor when I switch the device on and off.

The l-dopa also is unpredictable — it kicks in suddenly, at unpredictable times, if it kicks in at all, and it shuts off abruptly after a time that is unpredictable. I also have to heavily modify my diet to get a good response. After a couple of days tinkering with dosage, I’m now getting relief about 60 percent of the day, with a massive tremor in between. There’s no way I can drive when it’s shaking — it’s pretty much sit tight, relax and wait the hour or so for the meds to kick in.

Parkinson’s can be fun sometimes.

Tune-up number 3: Now we’re getting somewhere

I drove myself to Burlington yesterday for a device-tuning session with Dr Boyd, and I am relieved to say that we are now making progress with tremor reduction on the left side of my body.

It’s a stubborn tremor. Once we found the correct contact (#0, the one at the end of the lead) the tremor kept trying to break through. But if the pattern holds, I should see a steady reduction in the residual tremor in the next two weeks. Hopefully that can be accompanied by a reduction in the Stalevo — at the dose I’m currently taking, my right forearm is getting rather sore.

We didn’t dare turn it up too far — we didn’t want to push too far, because of the dyskinesia that occurred after the last adjustment. But we have plenty of room for adjusting these settings, and the outlook for tremor elimination is now quite good. But any relief, even what I’ve gotten so far during this second surgery, is most blessedly welcome.

So the score now stands like this: The first surgery (on the left side of my head, to control tremor on the right side of my body) was a home run, with tremor nearly eliminated and muscle stiffness, rigidity greatly relieved. The second surgery (on the right side of my head, to control the left side) is now more like a triple, with much relief from muscle rigidity and stiffness, and better control of tremor in the off-meds state. I think we’ll be able to wave this batter through in a week or two!

After the tune-up: Optimism

It seems that the longer we let the med changes and stim adjustments “bake into my brain,” the more curious it gets. It’s as if there are systems that are on the periphery of what we are stimulating that are taking some time to be fully affected, a delayed, ripple effect.

I’m noticing a reduction in the intensity of my tremor on the left side (we operated on the right side of my head, which affects the left side) — definitely less tremor at rest, and it is increasingly eased during action. Dramatic decrease in tension and rigidity, too. It really highlights the increased muscle tone on my right side — especially the ongoing ache in my right forearm.

Right side is much more dyskinetic (unwanted muscle movement, caused by overmedication) on the right side in recent days. And my right leg is dragging, too, noticeably, affecting gait and some times balance too. I’m astonished that such a small drop in the mirapex could result in such a noticeable decrease in right side performance. Cognitively, I’m dragging a bit, but overall, I’ll take what I can get — and what I’ve gotten is a lot of relief. I am optimistic.

 

Surgery #2: Did it work?

Yes, it worked!

Many of you know that I had surgery on Feb. 4 to implant a second stimulator in my brain. The stimulator is designed to relieve some of the symptoms of Parkinsons disease. A similar procedure in November 2009 nearly eliminated the tremor and the stiffness on my right side; this time, I was hoping for a similar victory on my left side.

Did we hit a home run, like we did the first time? No. I’d say it’s more like a triple, because I think I’ll still have to take some medication to control the tremor on the left side. I still have some tremor in the “off” medicine state.

But we are now in the process of reducing the meds, and their undesirable side effects. The tremor is vastly reduced in terms of intensity and duration. We still have some room to tweak the settings on the new device. This is all great news.

Both the doctor and I were shocked at how bad my left side had become in recent months. I had come off my meds for about 18 hours before the programming session, and I was a mess. We both noticed, for the first time, that my left leg was involved.

So let’s put this latest advance in its proper context. Without some sort of dramatic intervention, like the surgery, I would be in seriously bad condition. We’re talking about not being able to perform many of the so-called activities of daily living, such as feeding and dressing and toileting one’s self.

This technology is giving me a new lease on life. I am very fortunate, indeed. I look forward to returning the favor.

A welcome side effect

Sometimes following DBS surgery, PD symptoms abate for a period of time. This effect, called micro-lesioning, is something I don’t really understand. But I can tell you that I haven’t taken any Parkinson’s meds since noon, and I am currently tremor free on my left side — the side that we were hoping to fix. I don’t know how long it will last, or if it hints at future success when we do the initial programming. But it is certainly welcome!

Some quick words on surgery #2

I’m not at my best when I’m taking large volumes of Percoset, but I did want to check in with a few notes about the DBS experience this time around.

We’re back at the hotel on this cold Sunday, having been discharged yesteday. The second DBS procedure was a success, despite some issues with the placement of the recording electrode (this is a device that aids in placement of the lead, which is the part that is permanently implanted in the brain; it detects the unique electrical activity of the neurons that are layered near the target zone, and the signal that is detected is played back as audio). I’m keeping solid food down today.

The biggest difference between this surgery and the first was in not having complications from inserting a Foley catheter. The first time around, the Foley did not go in easily, resulting in a literal and procedural mess. The routine was disrupted because a urologist and nurse had to scrub in that morning; to minimize my discomfort and to keep me from freaking out, I received more anesthesia than usual.

So this time, I went with a Texas (condom) catheter, and that meant I was far more alert and aware of what was happening during the, uh, good parts. That included the drilling of the burr hole (surprisingly easy), trimming the edge of that hole (“you’re going to hear me sawing”), and the banter between surgeon and specialist as to whether they had nailed the placement of the lead (the audio signal of each type of neuron is unique, and that’s how the surgeon knows he has hit the target). Every indication is yes, they did nail the placement (to a 1 mm spot near the top of the brain stem).

We will know for sure on Feb. 24, when the device is turned on for the first time and the initial settings are dialed in. I do believe I had two instances of relief during the implantation, and if we are right about this, Feb. 24 will be a happy day indeed!