Holiday Update

I’ve neglected the blog for too long! It’s been very nice to reconnect with the family, after all we’ve been through the past three months. We have so much to be thankful for: My daughter’s health, after her diagnosis with Type 1 diabetes; and my own health, after a successful surgery to control symptoms of Parkinson’s disease.

At this point, my medication and stimulation are stable. However, we still have a need — and the possibility — of improving both. I still have some unwanted motion in the muscles of my right side, but compared with where we were two months ago, the change can still be considered miraculous. The left side seems a little undermedicated. By that I mean the tremor and generalized muscle stiffness is very evident when my med levels are low.

We have lots of room for improvement. The next step is likely to be a fine-tuning of the device that might allow for additional right-side relief while simultaneously rethinking the medicine for controlling the left. I’m looking forward to it.

DBS Basics: Dyskinesia

Dyskinesia is the writhing motion that most people associate with Parkinson’s. It is a side effect of the “gold standard” treatment for PD, which is a drug with the brand name Sinemet. Sinemet is basically dopamine, which is what our PD brains have stopped making.

The best example that you may have seen is Michael J. Fox, of course. When you see him interviewed, he’s moving around like a man possessed. That’s because he took his Sinemet and the levels (of the drug, and the stress of the interview) are too high. The alternative would be to see him in an “off” state, which in his case (and mine) means uncontrollable tremor, stiffness and rigidity, stooped posture and (for him) freezing — like a  statue, while walking or getting out of a chair.

Most people associate PD with dyskinesia, but that’s actually incorrect. PD is characterized by a lack of movement. I used to fluctuate between those two poles six times a day — the times when I had to take Sinemet. And that’s a different explainer altogether!

12 days since the light-up

I’m guardedly optimistic about where things stand wth the DBS system so far. My right arm has been nearly tremor- and dyskinesia-free; my gait and arm swing are nearly normal; left side tremor is doing OK but could be just a little bit better.

One of my tests for tremor level is functionality: Can I hold a steering wheel with both hands? Today the answer is yes, most of the time, although the left can get really uncomfortable when the med levels get low.

Today was also a good day to evaluate the system under heavy emotional stress. I volunteer on the board of the kids’ school, and I had to run a meeting that was extremely contentious, a disagreement between faculty members. You just can’t make everyone happy all the time, right? -sigh-

I found myself sitting on my hands at times, although I didn’t really need to. The tremor on both sides definitely increases with stress, but it recedes almost as quickly. The only consistent action happens in the morning, when I my upper right leg has an intense need to rotate internally. But there is no action elsewhere in the leg.

Non-motor side effects are hard to gauge at this point. Digestive system is just OK with the re-introduction of the benztropine, but that cost is definitely worth it when balanced against the tremor-reducing effect. It’s critical to the tremor reduction. I’m also dealing with more anxiety, and I definitely feel thick-headed. It’s possible that there are non-PD factors at play, such as stress, low blood sugar — these are both adrenaline triggers — and maybe poor sleep are contributors. The lack of exercise today doesn’t help, either, but I think I need the rest.

If I only had stable limbs …

After 11 days with the DBS system lit up, I can return to a daydream I used to indulge in, back when I was shaking too much to hold the babies or was too dyskinetic to drive a car.

How about another Porsche, but with a six-speed? Uh, well, no, not until college is paid for, and WFC begins paying a dividend again. How about driver’s ed at a racetrack? Tommy sent me an e-mail this year about the Porsche driving school somewhere down south. I told him I couldn’t drive the manual, and definitely would not be safe to drive until I knew I could hold the steering wheel with two hands.

So I’m settling on a decent digital SLR camera. I’m not tossing the little point-and-shoot camera that I can stuff in my shirt pocket. But I miss the control and quality I used to get from my old SLR cameras. I’ve been heavily geeking out reading reviews, doing comparison shopping, doing research on vendors. With cameras, it really does seem like you get what you pay for, and I don’t care about using an SLR to shoot video.

I’ll let you know what I can successfully negotiate with Santa. Do you think it would help if I explained it as, “Well, I could get a deal on a nice camera, or hey! Year-end sale at the Automaster!” ?? Maybe not. Maybe it’s the Mirapex triggering an obsessive reaction. Or one of my quests for subject-master expertise, like my flirtation with everything related to graphic novel/comic book. At least I have the Photoshop and design expertise to go with the camera bug … Did you know Norman Rockwell used a camera for nearly all of  his work? He used a projector to cast the image — careful composed, down to the last detail — onto canvas.

Ten-Day Update: Getting Closer

It’s been about 10 days since Dr. Boyd turned on the DBS system that was installed in November. Incredibly, I’ve still got a persistent cough from that nasty flu that I picked up from Graham. So my enthusiasm is still a bit diluted.

However, I can report that today was one of the best days I’ve had in a while. My levodopa has been halved, Mirapex reduced by a third. The right side is now almost free of any dyskinesia, leg or arm. I continue to walk well, with normal gait, posture and swinging of the arms.

My theory on what those new dyskinesias represent: Having reduced the stimulus caused by surplus dopamine, my brain was still accustomed to behaving a certain way when presented with smaller amounts of dopamine. It took some time for that patterned response to resolve itself in the extrapyramidal circuits affected by the loss of dopaminergic cells in the substantia nigra.

Now the problem is more on my left side, the side that we did not address via surgery because it has been affected for only three years. The third drug I reduced, benztopine, is nasty stuff. Anticholinergics are terrifically effective for calming tremor, but legendary for their non-motor side effects, primarily cognitive (dulling) and digestive (constipation). I take only half a tab of the smallest tab once a day, and I was eager to drop it. Bad move. Yesterday and the day before, I saw tremor on the left side to rival what I used to have on the right. As the benztropine reestablishes itself in my brain, the left arm is calming down. I hate the stuff, but I also hate what it is masking so effectively.

We trucked the kids up to a young-onset-PD-group Christmas party in Moretown, Vermont. It was great to be with old friends, and a few new ones. And I’m not BS-ing when I say everyone looked good.

Looks like Charlie is signed up for a trial of the “pump,” an external device that pipes a dopaminergic gel from a tube directly into the small intestine. I’d rather not have to use that sort of device because of the risk of infection posed by a chronic break in the skin into an area as biologically active as the gut. A DBS system is entirely contained within the body, and poses less of a problem for exercise and fitness routines. But that’s just me.

Michael says New England (?) is going to host a young-onset meeting next year. I’m happy to help, so if you are reading this, Michael: I can’t take over the chapter leadership at this point, but I can back you up on planning and logistics for whatever you signed us up for! Call me and we can discuss it further (and if you aren’t reading, I’ll be in touch).

Dissection Begins on Famous Brain

A reminder that the greatest insights about the workings of the brain are to be found in the aberrant. Scientists at MIT are busy digitizing the brain of the man who couldn’t remember anything. It will be sliced into 2,500 layers, allowing researchers around the world a window into how the brain rewires itself around damaged areas.

Read more:  Dissection Begins on Famous Brain