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.