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.

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.

Birth and Rebirth

A friend who had the DBS procedure a couple of years ahead of me talks of his anniversary as his rebirth day. For good reason, too: Despite his very advanced condition, he has enjoyed a huge amount of relief ever since.

Yesterday was my rebirth day, and today is my birthday. I’ll get a few birthday well-wishes from family and friends, maybe even a few presents (here’s hoping!). The rebirth day was one spent in reflection, doing a few things that I wouldn’t have been doing more than a year ago. I’ve been learning to play the bass guitar, and I had my lesson yesterday. I had the motivation to prep the Porsche for winter storage the way it ought to be prepped. Raked some leaves, too.

Little things, sure, but there’s a joy in each of them that had been dimmed slightly in past years. Here’s to the coming year and all the joys and trials that it will bring.

The Visceral Reaction to “Support Groups”

I was asked to pen a piece for the PD Center newsletter (in February, for August), and I got to thinking about why it is that people will go to a symposium, a conference, a workshop on Parkinson’s — but not a support group. Hopefully this article speaks to those people.


About six years ago, I was privileged to speak to small groups around Vermont during a series of half-day “workshops” on Parkinson’s. We bought local newspaper ads to tout the events, which were held in hotel conference rooms. We featured talks on how to maintain a health notebook and prepare for doctor visits, among other topics, and served coffee and danishes.

The goal was to make the workshops seem different than a support group meeting, because so many people react negatively to the idea of a support group. And it worked: the majority of people who attended had never attended a support group meeting.

But here is the secret: Much of what we discussed at the workshops was already familiar to anyone who has attended support group meetings — just packaged a little differently.

What draws people to a workshop, as opposed to a support group meeting? Maybe it’s the words “support group,” and the misconception of a meeting as a place to sit around and talk about yourself and each other and generally feel sorry about things you can’t do anything about.

My experience has been pretty much the opposite of that. I’ve learned vast amounts of practical information that I can use every day to make life better for myself and the people around me. It’s the kind of information that you might not be able to get from a doctor during the half-hour or so you might spend in a medical center every three to six months, working out your meds or their side effects.

It’s where I learned that exercise appears to slow down the progression of Parkinson’s — one of the only tools that is proving to be an effective at protecting those precious dopamine-producing neurons.

It’s where I learned how to eat while taking levodopa, sparing the protein during the day so that the drug could work its magic for as long as possible.

It’s where I first encountered people who had chosen to have deep-brain stimulation surgery, people who I could question at length and study their outcomes first-hand.

It’s true that people sometimes share information about how they are doing, but it’s not a requirement. The most that is asked of anyone at a meeting is their name, and — if you show up more than once — if you will bring the cookies next time.

Most of the time, someone has taken the time to line up an expert speaker how will present for up to a half hour, and answer questions from the group. A partial list of speakers at the group I attend includes: neurologists discussing the latest in research and treatment; neurosurgeons on surgical techniques; nutritionists, speech pathologists and urologists on the non-motor side effects of Parkinson’s; physical therapists and trainers on how to keep your body in fighting shape; representatives from regional ambulance services and FAST squads on the services they can offer to people with Parkinsons’s.

Sometimes the best speakers are the experts that surround you during the meeting. Some have lost spouses, and can share knowledge that comes only from experience. The list of experts goes on and on, but it is focused on the positive, on tools that you can use every day to improve the quality of your life and the people around you.

No matter what you call it — a workshop, a symposium, a support group meeting — you will probably learn something that you didn’t know before. No one will take attendance, or ask you how you feel or do anything that makes you uncomfortable. No moping! You are always welcome, without any conditions or prerequisites other than a desire to figure out how to tackle this huge challenge.

The Hell of E-mail

I started the day intending to make some phone calls and updating the blog. Instead, I got sucked into cleaning out my inbox. This isn’t the kind of flow that excites the Malcolm Gladwells of the world, is it?

Bruce Talbot

Bruce Talbot, 3/19/10

5:13 p.m., at Fannie Allen rehab center, Burlington, Vermont.

Bruce Talbot is a one-of-a-kind character whose presence has touched hundreds of people in unpredictable ways. He found me at the second Parkinson’s support group meeting that Suzanne and I attended, in February 2002. That meeting changed my life forever, by giving me the kernel of self respect that carried me through my darkest years with this execrable condition.

He’s had PD for 15 years now, but the battle opened on another front two weeks ago. Bruce has an aggressive type of brain cancer (Glioblastoma Multiforme Grade IV, or GBM). It’s terminal, but he’s reached his peace. After nearly six weeks of radiation, Bruce intends to travel the world with his family in three-week bursts, with breaks for more treatment. It ought to be a good year, my friend. I’m looking forward to the many stories yet to be told.

During our visit on Friday, Bruce allowed me to take his picture. He is truly brave!