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.

Exercise, the brain, and PD research

More evidence of the benefits of exercise on cognition in this New York Times article on exercise boosting levels of a substance (BDNF) thought to help in the regeneration of brain cells.

The article brings to mind the controversial trials of GDNF, an enzyme thought to help in the creation of new neurons, or brain cells. Amgen halted the trail because of safety concerns; some thought those fears were overblown. A complex case, for sure; an expert panel found no difference between placebo and GDNF, and noted that some in the trial developed anti-GDNF antibodies.

So maybe there still some hunt left in that neurotrophic growth factor dog, after all?

Selling New England to the Youth Market

We’ve known for a while that young people are leaving northern New England in droves, to pursue opportunity elsewhere. So it’s a relief to see area governments are doing what they can, in a somewhat cost effective manner.

But it does raise the question of what will come of the area if current trends continue. The irony is that for young families, this area can’t be beat for raising kids. And at least in New Hampshire, lean government makes it easier for entrepreneurs to succeed.

New England Issues Sales Pitch for Young Graduates (WSJ subscription required)

Over the top analogies

Dan  Neil, who writes the Rumble Seat car column for The Wall Street Journal, won a Pulitzer for criticism when he was with the Los Angeles Times. It must have been because of his brilliant use of analogy and metaphor. Consider this gem from his column on the new V-12 Lamborghini (here he’s making a point about the previous flagship, the Murcielago):

The Murce’s battle-hammer handling is well known, and it really did tend to erode the brand with aficionados. Owning one was like being married to a stunning, six-foot model with a lobotomy. People were torn between envy and pity.

From  that same column comes the word of the day: chthonic.

A parting bit from the same column:

Lambo had two top-line goals for the Aventador. The first was to build a supercar with exceptional handling. The second was to underscore the brand’s Italianness. As to the second, mission accomplished. Not since the Roman Legion has anything Italian killed so indiscriminately.

 

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!

Why Bookstores are Dying

A well-known author of thrillers passes on a $500,000 advance from his publisher so that he can self-publish online. Not so risky, when his self e-published short story has earned him $30,000.

It’s hard to imagine that kind of success without having had the prior benefit of a publisher’s marketing muscle, but it’s nice to think about. This is a great read:

The Heart of the Matter: Ebooks and Self-Publishing: A Conversation Between Authors Barry Eisler and Joe Konrath.

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.