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.

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).

It works!

Just a quick note to let people know that we turned the stimulator on today and .. it works! We’re getting good results from a relatively low power setting, which bodes well for battery life and future adjustments as we back out the meds. That process starts immediately, with a 50 percent reduction in my levodopa intake. Incredible.

I’d be popping the champagne corks, but I have a wicked cold and feel otherwise pretty miserable. Just my luck! Drove back in the rain … I’m beat. I’ll write up a proper note tomorrow.

DBS Journal: Lighting Up

I’ll hit the road later today for Burlington, where I will arguably have a date tomorrow as important as the surgery I went through two and a half weeks ago. I’ll go off my meds this evening, and tomorrow morning I’ll have the stimulator turned on for the first time. In a three-hour session, Dr Boyd and I will explore the limits of what the device can do for me. Wea re very optimistic. Too bad about this persistent cough!

Day 15: Giving Thanks (cough-cough)

It was one hell of a week, but we persevered. IEB came home from the hospital Wednesday night after being diagnosed and treated for type 1 diabetes. She’s doing great. Unfortunately, her parents both have the cough that has plagued Graham, in the wake of his flu. Who says you can’t have it all?

At this point, the surgery really is pretty much in the past. The wounds continue to heal; my hair has grown in enough that I don’t need to wear a bandana. The incision sites aren’t so swollen anymore, although I’m a little curious as to how I’m going to get along with this unit in my chest. Seems like it’s placed right up by my left collarbone, with the extension running over the top of the bone. With my body-fat ratio well under 10 percent, you can see the edges very clearly. I’m still cautious in the gym. I don’t want to put unnecessary pressure on the wound — I wouldn’t want that IPG to come popping out of there!

I am looking forward to Thursday and the initial programming.

DBS Journal: Deep Brain Stimulation Surgery, A First-Person Account

I recently had surgery to address symptoms related to Parkinson’s disease. This article is a relatively brief overview of my experience. (The two large photos are courtesy of Dr. Irene Osborne, the lead anesthesiologist and official shutterbug.)

Thursday, Nov. 12, 2009

Suzanne received the call from Mt Sinai admissions around noon, and was told we could show up as late as 3 or 4 that afternoon. My brother Tom, Sally (family friend), Suzanne (my indomitable wife) and I had a good lunch at Corner bakery, and then moseyed over to the hospital after 4 p.m. Intake was swift and uneventful, notable for the GPS location device on my bracelet (unique to the neurology floors, to find wandering patients). By dinnertime, I was set up in room 109B, a semi-private room with a spectacular view of Central Park. Continue reading

Day 7: Catheter and staples removed

Ah, the things that bring ecstasy! I got the catheter removed today — a huge pain gone from between the legs! Seems like things are actually better than before down there. Think rotor-rooter.

Stopped by to visit Dr. Boyd, who squeezed me in to give the 3 incision sites a once-over. Not only were they healing quite nicely, but they were ready to have the staples removed. You’d think that would be easy, but they don’t have a surgical staple remover in Neuro. After a very brief delay, the staples were out, I was cleared for quick showers and light exercise, which means no bench pressing, chest work or chest stretching — not that I need any of that. Looking forward to Dec. 3.