DATE: Sept. 9, 2014
LOCATION: Memorial Herrmann Hospital, Houston
SCENE: Our Hero sits on a surgical bed, a man standing in front of him with a barber’s electric clippers in hand. Man informs Our Hero that he is about to give him “The $500 Haircut.” Fade out as Man leans forward and starts to shave Our Hero’s head.
A month later (give or take a couple of days) …
DATE: Oct. 7, 2014
LOCATION: The University of Texas Health Science Center at Houston
SCENE: Our Hero stands triumphantly before a mirror in his movement disorder specialist’s (MDS) office, a smile on his face like he hasn’t had in months, perhaps years. Moments before, another Man has pushed some buttons on what looks like an overgrown TV remote, and the battery implanted two weeks before near Our Hero’s collarbone has begun sending signals to the wiring added to his brain that same day and, suddenly, his body is functioning normally for the first time in years – tremors gone, speech normal, all that sort of stuff. Looking in the mirror with an overwhelming sense of pride and joy, he takes out his mobile phone and snaps a selfie to capture the moment. Fade out …
And that’s my movie; at least, that’s how my movie begins and ends. Or, to be more specific, that’s how my original Deep Brain Stimulation movie begins and ends.
See, as with most successful films these days, there’s a sequel. And as with most sequels, it’s not nearly as good as the original. Oh, it’s not “Caddyshack 2” awful; it’s just nowhere near “The Godfather: Part II” good.
Call it “The PD Strikes Back” for lack of anything better.
A little background: I am a 55-year-old guy, diagnosed in February 2008 at age 44. Back then, the tremors were the main way – in fact, at times almost the only way – that the disease presented itself. They grew worse over time, and by 2014 I was judged a good candidate for Deep Brain Stimulation (DBS) surgery. By August, I was taking mental aptitude tests and arranging for three months of medical leave from my job as a copy editor.
And so, 10 days before my 51st birthday, I was all gowned up for the first surgical procedure of my life. But this wasn’t a pin in a broken arm or repair on a football-damaged knee. This was the “$500 haircut” – shaving my head, in other words – followed by a barrage of needles into my scalp to deaden it locally … since (hooray!) you get to stay awake through this part of the surgery. And since this part requires that holes be drilled into your skull and a metal “halo” attached, a deadened scalp probably is a good idea.
To be entirely truthful, however, this all sounds worse than it actually is (or, at least, was for me, which, obviously, is how I’ll describe things). For one thing, there is virtually no pain; those needles do their job spectacularly. In fact, the only real pain came from having to sit still for around eight hours; I eventually received an epidural to relieve the pressure on my tailbone, which became intense and sharp. Past that, I honestly don’t remember too much of what was being done to me, since they specifically calibrate the medication to where you can respond to simple commands while at the same time not remember much of what’s being done to you.
Anyway, two weeks passed easily before part 2 of the procedure, which was a relatively simple inpatient procedure involving the installation of the neurostimulator (essentially, a battery pack) in my chest near the collarbone and attaching it to the wires that ran down my neck from my brain. In case of infection or other post-operative hazards, it was another two weeks before I returned to my MDS to have it all switched on. Once the proper pulse rate and voltage had been set remotely on each side – I should note at this point that I opted to have the procedure done on both sides of my brain, which isn’t always the case – I felt something in my body I hadn’t felt in a long, long time.
Normalcy.
Sweet, wonderful normalcy. Something, I think it’s safe to say, all of us take for granted until we can’t.
I obligingly posted my selfie to Facebook and went back to Corpus Christi to recuperate, actually anxious to get back to work even though my leave lasted another six weeks or so.
And he lived happily ever after …
For the most part.
Four-plus years later, the tremors remain gone. I cannot emphasize this enough: This means the surgery was a success. It sometimes feels like proponents want to tout it as a cure for Parkinson’s. It’s not. Not by a long shot. It alleviates the most common and obvious symptom. That’s what it’s designed to do, and, four-plus years later, it’s still doing it.
But Parkinson’s is a sneaky bastard. Build a wall around its most obvious means of disruption and it simply contrives alternate means of entry. One of the first things I was told when first being diagnosed was that PD is a “boutique disease,” meaning, in essence, that it treats no two people the same way. There are a few predictable symptoms, but to what degree you will suffer from them; which unpredictable maladies you will encounter, who knows?
My post-surgery developments have turned out to be fairly common, which makes them no less a pain in the ass but at least makes them more easily discussed and compensated for. For example, balance. I often have described my movements, particularly when standing up after sitting still for a prolonged period, as being akin to those of a drunken toddler. (Pause for suitable mental imagery to imbed itself, then continue.) In addition, I am a fall risk. I don’t get dizzy; I just lose my balance and have been known to take tumbles, one having been serious enough to land me in an emergency room with a head wound that required stitches. So I have to stand more slowly and carefully, and I make full use of available rails and walls when needed to maintain balance.
Then there’s speech and swallowing, which I tend to group together for the purpose of discussion. My salivary glands, for whatever reasons, work overtime, which tends to affect both speech and swallowing adversely. I have found that foods that flake easily when chewed (including, among many others, lettuce and many chips) or meats that are not very, very tender are particularly difficult to swallow … but, then, so are most others in some way. Same goes for thin liquids, such as water and alcohol. I have resisted going on a specifically restrictive diet and thickened liquids because … I don’t know; I guess I know it’s all fairly inevitable and I want to enjoy “real” food and drink as long as I can.
I also tend to drool quite a bit and have a rather pronounced tongue tremor, which unfortunately cannot seem to be controlled by medication (in fact, increasing my levodopa/carbidopa levels only seems to make it worse, in addition to creating a shoulder twitch at night) or by changes to my DBS settings.
As for speech, I have undergone four weeks of the “big and loud” therapy program and have seen positive results. But it’s no permanent cure. In my opinion – and, again, I want to stress: this is purely my opinion – this is one area where the DBS procedure may have created, or at least contributed to, an adverse side effect. I have been told by a licensed speech therapist that the part of the brain stimulated by the DBS transmitter sits directly on and above the part that controls speech, and that the constant stimulation may prevent the speech part from functioning properly. In any event, clear speech comes rarely and not without great effort on my part.
Also – tangentially involving PD and DBS at best but mentioned in case anyone was wondering – I no longer drive, which is OK because I no longer have a job to which to drive. As newspapers cut back, copy editing positions are often the first to go. Mine went a couple of years ago. But never fear: I shortly thereafter was approved for Social Security disability payments.
So I guess on balance the sequel ends on a high note, but it’s definitely not the feel-good hit the original was. Except for the part about having no tremors, and the added bonus of still having a loving and supportive wife and family.
Cue the dramatic, sappy music. And fade out…
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Photo by JAFAR AHMED on Unsplash