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, with increasingly frequent breakthrough tremors happening during off periods. But the left side now feels like my right side did before DBS.

Mornings used to be my best time of day, probably because of the amantadine (it has a stimulating effect, so I take it morning and noon so it won’t interfere with sleep). The left side tremor reappears more quickly during the wear-off period, and it’s far more intense. The stiffness and rigidity has made a dramatic reappearance.

It seems as if the Parkinson’s is fighting back against the stimulator, that it is adapting to the device as if it were one of those antibiotic-resistant bacteria. I never expected a cure or a slowdown, but this relentless progression is a little worrisome. Maybe it’s stress.

I’ll have a stimulator adjustment in about a month, which ought to bring some relief to te right side. We will probably run through the medication options, too. But I’ve been through the mill with meds, though, and I don’t like the way they affect my thinking (I’m already borderline with OCD issues at current dose of mirapex) or my body (the dyskinesias that accompany levodopa/carbidopa).

My second session of device tuning opened with Dr. Boyd asking when I would get the left side done. My last office consult with Dr. Coffey opened with him asking what it would take for me to get the left side done. With the right side, I just knew when it was time. Now I know it’s time for the left.

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.

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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.

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 and leg.

It’s still a good thing, having this hardware in my head. The process feels more like I’m taking two steps forward, then a slow half step back. My right arm is not nearly as sore as it was, although the latent muscle tension is still there. The dystonia in that arm is creeping back. My right knee is tracking better, but not quite as well as the day of the adjustment.

The left side continues to be an issue. Meds control it for about half the day; the other half ranges from mildly uncomfortable to completely unusable, cramped and painful. Surgery within the year? It’s likely.