DBS part 2

To understand why I chose to move forward with DBS--and why I chose to do it now--some background is needed.

First, there is the concept of 'on' and 'off'.  In the world of Parkinson's, 'on' and 'off' refer to the effectiveness of medication at any point in time, in terms of how functional you are.  Generally speaking, if you can do the things you want and/or need to do, you are on (or your meds are on).  If you cannot, your meds are off, or you are in 'off time'.

Second, there are many medications used to treat the symptoms of PD.  I say 'treat the symptoms' because they do just that.  The symptoms are caused by a lack of the neurotransmitter dopamine, and while much research is ongoing to find a way to slow the progression of the disease, the historically-common medications mostly work to preserve and protect the dopamine that is in the patient's system, and to add artifical dopamine to replace the dopamine that the brain should be producing, but is not.  That last effect is the result of carbidopa-levodopa, the gold standard for treating at least the physical symptoms of PD, and possibly some of the cognitive symptoms aa well.  I call it the gold standard because it works--we need that dopamine!--but replacing or preserving dopamine does not address the cause of the dopamine shortage.

When I was diagnosed, I was put on rasagiline (later changing from rasagiline to selegiline), but not carbidopa levodopa.  At the time, that was fine.  I was functional without it, but within a few years that was no longer the case.  The disease is progressive, meaning continually getting worse, and so the time came for me to accept that I was under-medicated, and start taking carbidopa-levodopa.  This worked wonders--for a while.  Exercise is the only 'medicine' or treatment that is proven to slow the proogression of PD, and so I did what I now recommend to everyone:  Exercise.  Hard.  A LOT.  However, given the progressive nature of PD, the time came when that was enough, and so we added to my medications.  By 'we' I mean my neurologists and I, working as a team to find an effective and economical combination of drugs.  We added doses of the carbidopa-levodopa, and we added new (to me) medications to my daily routine.   Things were good for a while.

Eventually, my PD did what it always does--it progressed to the point where the medications were not enough to get me through a standard day.  The on time was getting shorter, with the result that I had begun to have periods of off time during the day.  The next step after off time starts to appear is that it becomes larger.  As a rough analogy you could picture a peninsula that, as water level gets lower, becomes a chain of islands.  The peninsula corresponds to a day of no off time, and the island chain to a day with off time.  As the water level continues to rise (aka as the land is sinking), the distance between islands becomes greater; there is more water between them.  The islands represent on time, which changes from a constant state to a sporadic state, and the off time grows to encompass a larger part of one's waking hours.

As my off time became more frequent and longer lasting, it affected my work as well as my free time.  I have described it as can't move/can't stop moving and can't sit/can't stand.  To understand this apparent paradox, imagine being stuck and unable to operate either keyboard or mouse (can't move), but then when you try really hard, you go into a nasty, uncontrollable tremor (can't stop moving).  Or when standing, something about it feels wrong--almost painful--and to get some relief you decide to sit.  Hoowever, when sititng you feel the same sensation and decide to stand . . . then sit . . . then stand.  It's enough to drive you crazy.

It was at this point that my type A personality asserted itself; this took the form of a decision to mimic the process that the neurologists and I went through when looking for a combination of drugs that produced the desired result in me.  I experimented with my medications until I found what worked, and I went with it.  I don't recall if the end came about because my prescriptions needed to be refilled earlier than expected, or because I brought it up at my next regular appointment, but I remember the reaction being one of . . . surprise . . . followed by a quick review of effects and side effects . . . followed by a stern admonition and warning not to do that.  I stubbornly thought that whatever studies were performed to identify safe doses, etc.  were all well and good, but not a single had ever been performed to identify safe or effective doses *for me*.  No matter, the prescriptions would not be adjusted as needed to accommodate my plan.

So.  What else is there?  What other options exist to tame (or banish!) this awful off time besides pharmaceuticals?

I had spent the preceding years learning at least some of the answers to that question.  The three major options were Duopa (pumps carbidopa-levodopa directly into the small intestine), ultrasonic lesions, and DBS.  DBS seemed the most promising.  Until then I had always viewed DBS as a question:  is it right for me?  My decision was made, and the question became a process, the steps of which are described in 'DBS part 1'.