Written by Jon Lessin
There’s no doubt that Deep Brain Stimulation (DBS) saved my life. Well, at least my quality of life.
You may suspect that as an anesthesiologist I asked for the procedure long before it was offered to me. That because my experience told me that the surgery was painless and the benefits would decidedly outweigh the risks, that I would have jumped right in. Or, that because I had access to a Center of Excellence as awarded by the National Parkinson’s Foundation, and because I knew the complication rate was meager, that I would have even demanded it happen as soon as possible… before my symptoms became virtually unbearable.
However, that’s not the case.
The truth is, like most of us, Parkinson’s was taking its toll on me, and by the time I began thinking seriously about DBS, I was desperate. I felt Parkinson’s taking over my body and, despite my eternal optimism, my quality of life slipping away.
The medication, while still working, would give me only five minutes of ON time until the unwanted involuntary movements (dyskinesias) occurred. Most of the time I was waiting for the medication to kick in or waiting for the medication to wear off, both states that are terribly uncomfortable. I needed to do something.
If I had known then what I know now about DBS, I would have asked for it even earlier. Turning the DBS on feels precisely the same as when my medications kick in but WITHOUT dyskinesias. I say this because the DBS is adjustable and if those unwanted movements show up, I can turn down the amplitude of the stimulator until they go away. The programmer can set limits that will keep it in a range of maximum benefit without side effects. That’s a dream.
When I was considering DBS, I had a few critical considerations. First and foremost was my diagnosis. Did I really have levodopa-responsive Parkinson’s? To suss this out, my neurologist had me come in when I was OFF my medications and take a dose of levodopa in his office so he could document that I did have a beneficial effect when the medicine kicked in. If my motor symptoms improved with levodopa, they should likewise improve with DBS.
Secondly, I needed to have realistic expectations. DBS wasn’t going to eliminate my Parkinson’s altogether. I should only expect it to improve my motor symptoms. I should expect nothing more than my best ON time at the time of the DBS implantation. In other words, it wasn’t going to transform me into the six million dollar man!
Moreover, DBS doesn’t treat the non-motor symptoms of Parkinson’s. Therefore, I should not expect to use it as solo therapy. I would still need some medication to treat constipation, REM Sleep Behavior Disorder and anhedonia, to name a few. The dosage of medication, however, would be significantly less and subsequently, the dyskinesias would be virtually eliminated.
With DBS I was able to continue to work as a cardiac anesthesiologist in my dream job with confidence in my own hands for another four years. I had always been an avid snow skier, but for ten years leading up to DBS, I had trouble turning right. This difficulty of movement was miraculously cured by DBS, and I even returned to skiing moguls again. I started indoor rock climbing and also became an active cyclist, riding several century rides. I even tackled Ride The Rockies, over 500 miles of cycling through the Colorado Rockies, in only seven days. I was known to reach into my pocket, pull out my DBS remote, and turn it up as I approached a hill to help my ascent!
I’ve had DBS for over ten years now. After about nine months of trial and error and tweaking my programming, I felt completely dialed in. Ten years later I’m still blessed with virtually the same motor function. Well, at least when I have power.
What I didn’t realize was that over the years, despite feeling great with DBS, my freezing and slowness of movement had continued to progress. I learned this the hard way.
My typical routine at the time was to wait to recharge the battery until I was down to 25%. Care to guess what happened? I felt the Parkinson’s attack my body as the DBS ran out of charge. Luckily (for me) this happened at about 5 am, and my wife hadn’t yet left for work. I was very stiff and moving much slower than I expected. I couldn’t even roll over in bed. My wife was able to retrieve my charger and remote for me, and I was luckily able to charge it enough to turn it back on and call off the rescue squad!
I wish I could say I would never do that again. Accidents are accidents. Of course, it had to happen twice. Now I religiously recharge every Sunday and Wednesday to stay well ahead of the game. I have no reason to prove to myself that I take the benefits of DBS for granted. I am so incredibly thankful to have it.