My First DBS Surgery

I’ve collected onto a single page all of the pages and posts related to my November 2009 deep brain stimulation surgery. For those who want to cut to the chase, here is a link to the page (recently updated with pictures) describing the surgery itself.

The Choice Matters: Go With the Specialist

An article in The New York Times makes a point that might seem self-evident: Patients fitted with heart devices had fewer problems when those devices were implanted by doctors who had special training. I think this finding is very relevant … Continue reading

Life Without Meds, Part 1

As part of the pre-operative routine, it’s customary to take video before and after surgery, in both the “on” and “off” states. I’m in the process of tapering off right now, and I don’t really like where I’m going. I … Continue reading

Life Without Meds, part 2

A reminder of what my life can be like without Parkinson’s meds. If missing one dose was bad, wait until the day of surgery. Continue reading

What is Deep Brain Stimulation?

Deep Brain Stimulation refers to a medical procedure that involves the placement of an electrode into the brain. Electrical current is  delivered to a specific target in order to provide relief for a growing number of conditions, including Parkinson’s disease, … Continue reading

Why am I Choosing DBS Surgery?

I’ve had Parkinson’s since February 1998, when the first bit of tremor showed up in the very tip of my right middle finger. Barely a flutter, but odd nonetheless. Within three months, my entire right arm was affected. A correct … Continue reading

Countdown: Four Full Days

I’ve got four full days before Suzanne and I get on the bus for NYC. Back in August when we set the date for the surgery, I knew the time would go fast. It sure did. Got a few lingering … Continue reading

Meet My DBS Team

I am truly fortunate to be working with some of the best neurologists and neurosurgeons in the United States. I do not say that that lightly. The publications lists may be out of date, but a PubMed search will give … Continue reading

Life Without Meds, part 3

We’re going to attempt the on/off state video again today. Off my meds starting at 9:30 last night. Got to get dressed while I still can.

Life Without Meds, Part 4

This latest experiment ended Sunday at 12:05 pm, when we finished up doing a video based on the UPDRS section for motor examination — finger tapping, heel stomping, that kind of stuff. I had figured that I would have been … Continue reading

Countdown: Two Days

I’ve been told that there will be a point where time will crawl. Hasn’t happened yet. We leave tomorrow morning, and I’m not very anxious or tense. That might change by Friday, when I’m introduced to the halo and a … Continue reading

DBS Journal: Arrival in NYC

The Dartmouth Coach bus brought us to Grand Central 10 minutes early; we had time to shuck some bags at the hotel and to grab some lunch before hoofing it to the office of Ron Alterman, the neurosurgeon. The meeting … Continue reading

DBS Journal: A Good Night

Despite all of the ethnic food around us in Yorkville — Argentine pizza? — the choice was left to me, and I opted for red meat. Had a great steak at Parlor. Tom again performed beyond the call of duty … Continue reading

DBS Journal: Admission Day

We’ve received so much support, and so many e-mails, heading into this big day. It is simply awesome to have so many cheerleaders. It eases the anxiety, which is only just now starting to mount for me. (I was wondering … Continue reading

DBS Journal: Show time!

Got the call from hospital admissions and are heading over to check in. Thanks everyone! Suzanne will be updating you via e-mail in my absence.

DBS Journal: Saturday Night

I’m back at hotel now, more than a day after the surgery. I think it was a success, by all measures. One measure is the moment of truth, the instant at which you realize the lead is actually working. Another … Continue reading

DBS Journal: Taking Stock

As the anesthesia wears off, I’m finding it slightly easier to talk and form sentences. It can be deceptive – you think you are feeling fine, but then try to talk and everything comes out jumbled, stammering and lacking syntax. … Continue reading

DBS Journal: Going Home

The ride home was thankfully uneventful, with little traffic north of New Haven and sunny skies. To other DBS patients, I’d say I could have gone home the day after discharge, if it wasn’t for the complication. That complication will … Continue reading

DBS Journal: Rest, Recuperate, Reflect

I received Irene’s photographs of the surgery via e-mail this morning, and that led me to think about just how graphic the account of the surgery ought to be. I’m going to go graphic, because I think you want to … Continue reading

DBS Journal: Transparency

A good, old friend (Ken B) included this comment in a note just ahead of my surgery: The more I think about it, the more I really appreciate that you sent out that e-mail this morning.  In my (not-so-humble) opinion, … Continue reading

Day 6: The article is coming

Range of motion in head and neck improving. First draft of the surgery article, and photos, coming together nicely. Tomorrow I hope to get the tube removed, and to get a first look at the cuts under those bandages. It’s … 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 … Continue reading

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, … Continue reading

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 … Continue reading

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 … Continue reading

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 … Continue reading

DBS Journal: Initial Programming 12/3/09

After all the anticipation, hand-wringing and planning, we know now that the DBS system works. Hurray! I’d be totally psyched up, were it not for this ferocious cough (lingering swine flu). And the dyskinesia. But I’ll get to that later, … Continue reading

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 … Continue reading

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 … Continue reading

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 … Continue reading

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 … Continue reading

DBS Journal: After the second tune-up

It’s been about a week and a half since I brought myself in for the second tune-up. So far, the unwanted movement in my right arm and leg (aka dyskinesia) is greatly reduced — and all we did was turn … Continue reading

Yes, that was my doctor!

Ron Alterman, neurosurgeon at Mt Sinai Medical Center in New York, performed a DBS procedure live on national TV yesterday on “The Today Show.” I don’t have a TV. I hope he didn’t mess up! Here is a link.

DBS Journal: Device Tuning #3

My third tuning session, back on February 11, hasn’t scored as high on the relief scale as the first two. I’m doing pretty good generally, but I’m struggling a bit more than usual. First the good news: Most of the … Continue reading

Coming through the haze

I have to remember to be more patient when it comes to tinkering with my brain chemistry. After years of riding along at the same medicine levels (more or less), it’s got to take some time getting used to a … Continue reading

Spring changes (nearly) everything

Maybe it’s the change of weather. Maybe it’s a new stability in my medication regime. But I’ve been enjoying a return of my motivation levels, and with it, a new level of contentment.

DBS Journal: Device Tuning #4

Yes, the last time I saw the doctor was in February. Time flies. I’m happy to report a potentially really good session was had on short notice this afternoon.

DBS Journal: Device Tuning #4 (update)

Almost two days since the device was last tuned, and the improvements to my right side functions are still accruing. The constant muscle tension is abating, even in places I hadn’t expected (like my neck). Posture, gait are doing nicely, … Continue reading

DBS Journal: Device Tuning #4 (update #2)

I can see a pattern emerging in the device tuning process and aftermath: Initial results are encouraging, but after a week or so some of the unwanted side effects start to edge their way back into the right side arm … Continue reading

DBS surgery posts now on a single page

I’ve pulled together a page that lists in chronological order all of the blog posts related to my DBS surgery in November 2009. I’ve also added two more photos to the post that details the surgery itself. I hope you … Continue reading

DBS Journal: It’s Time for Round 2

I’m trying to figure out the best way to get relief on my left side, the side that we did not stimulate. All roads keep leading back to doing a second surgery. My right side is doing pretty well overall, … Continue reading