Partners for Parkinson's Event

This past weekend, dovetailed into my 33rd wedding anniversary, my wife and I attended an event titled "Partners in Parkinson's," a group associated with the Micheal J. Fox Foundation which seeks to develop help for Parkinson's patients and their caregivers through sharing information and helping to develop a "care team" for the patient. (Now that's a good run-on sentence!)

Thought I'd give a summary of how the event went.

First, there was the obvious benefit of meeting other people with Parkinson's. You get to compare notes, see others are not only surviving this disease, but thriving. And of course we saw a few who were further along and in worse shape than I am currently.

Second, we discovered some new resources in exercise, and other similar helps. Several people emphasize the need for exercise to help deal with the symptoms of this disease. Info like that confirmed I'm on the right track with all the exercise I've taken on in the last couple of months. I believe it is helping me in more than one way, but it is hard to nail down specifics other than an overall feeling of doing better.

Third, we learned a few things that we didn't know before. Some of it relating to questions we asked one-on-one with panelist and a movement disorder specialist.

One of those was in relation to dopamine and its long-term effectiveness. We were told that it is a popular myth that dopamine loses its effectiveness through long-term use. Rather, the reason one needs to take more and more of it is because the disease progresses. As more dopamine-producing neurons die, it requires more and more of the drug to offset the loss of dopamine. So the slower the progression, the less of the drug that will be needed over a period of time.

Also learned more about why dyskinesia (involuntary movements as a side-effect of the drug) eventually happens. The neurons that produce dopamine also store it. In the beginning of taking the drug, not only is there less dopamine being thrown into the brain, but the neurons still alive are able to absorb and store some of it to help regulate how much is in the pathways at a given time. Too much overexcites the nervous system and causes the involuntary movements.

As more neurons die, not only is more dopamine needed via the drug, but the ability of the brain to store and regulate the dopamine levels diminishes, resulting in more dyskinesia due to too much dopamine hitting receptors, triggering movements the brain didn't intend.

What this means for me since I've developed dyskinesia so early may be either my progression has been fast and I've lost a significant number of neurons over the past two years, or my symptoms started later than most at my stage of neuron loss.

Another "myth" I learned about is the idea that deep-brain stimulation's (a pacemaker for the brain) effectiveness wears off around 5 years or so, then it's done. What really happens is the area around the probe gets "calloused" due to the flow of electricity from the probe. As it becomes less sensitive around the probe, it blocks more and more of the electrical current, making it less effective.

The solution to this is to move the probe to a different part of the brain. Then it can be just as effective as ever in regulating movement symptoms. So DBS isn't just a temporary fix. It just requires some maintenance for long-term use.

This is one reason why many are now suggesting DBS earlier than later. Early on, it can be sufficient to regulate movement symptoms without additional medications, resulting in a higher quality of life early on. As the disease progresses, DBS may not be able to stop all the symptoms and require additional medication. Typically people who get DBS in later stages are able to reduce their medications and still the combo doesn't eliminate all symptoms.

So if I wait until I'm pretty bad off, DBS may bring me back to my current condition. But if I get it now, I might be able to be "normal" without medication for a period of years. Which would give me more writing time and an efficiency I currently don't have.

I just have to get past the idea of having a probe stuck in my brain. But being "normal" for a few more years, and productive, is motivating me to consider it sooner than later.

Anyway, the event was worthwhile, and the whole weekend was good. We had a great anniversary and enjoyed visiting with friends we'd not seen in a while. Many blessings to count.