DBS – It’s up to me; not you.

I don’t mean to sound mean in the title, especially when everybody means well and we all want what is best for those whom we love. But what CAN be done to one’s body – specifically on an optional basis – should be up to that person to decide for him- or herself.

Thursday was my most recent visit with my neurologist. This was the first in-person visit since December 2021. With the three follow-ups in between being “tele-health”. Now I am noticing a very distinct pattern with these visits. The in-office are extraordinarily stressful, not so much in the “white coat syndrome” situation as it is with the “the appointment is only a ‘few’ minutes but the damn thing eats up my day” sort of situation. Part of that is due to distance, and considering the safest and easiest method of getting there, so on and so forth.

When Lisa took me to the appointment in 2021, it was a semi-cold day, but you wouldn’t have known it to look at me. The appointment fell at almost the precise time of day where I am most likely to nap, the office heat was on full-blast causing me to sweat and my mouth to dry up, and where there’s heat, tremors are likely to follow. The doctor always sends a “fellow” in first. It is rare this is the same person each visit, and I doubt very highly I will see that person again after that. They do all the movement tests and watch me walk the hallway. Then they usually give me their “expert” opinion about what they think I should do.

So there I am sweating and feeling gross… shaking and not able to simmer it down… and of course we’re masked with N-95s to slow the passing of any virus. _{(The most light-hearted moment of this appointment was when the good doctor came in and proceeded to ask Lisa, “Do you notice him acting out in his dreams at night?” To which she responded, “I’ve never noticed because I don’t sleep with him. I’m the ‘best friend’ here.” We had a good giggle over that and moved on!)} There was a bit of discussion about medicine adjustment and so forth and a hint of discussion about DBS – Deep Brain Stimulation. I was told the following two appointments could be done via telehealth unless I deemed it necessary to go in. One appointment was three months later with the PA, and the other would follow 3 months after that with the doctor. On the car ride home, my body was exuding so much heat Lisa gave me permission to open the passenger window I had fogged up!

To be fair, many people have mentioned DBS to me. Again, all of these folks are being helpful and well-meaning, but maybe only having heard of it from another person with the disease or through something they read. “This sounds like the perfect solution to your issue! You should look into it” I usually answer with something to the effect of, “I have, and I appreciate the concern and interest. But I don’t yet see it as the ‘miracle’ everybody thinks it is.

Fast forward to June, 2022 – I had just started with some chiropractic treatment which helped and continues to do so with a lot of other aches and pains in my body. After a few adjustments (I think about 7 or 8 by month’s end) I was feeling really good. Less pain, meds were doing everything they should be doing, and I had more energy than I had in a long time. Of course it was a Thursday afternoon, and for some reason I ended up being in the church office that day which is not a usual thing, but I don’t recall why I was there that day instead. Both Lisa and Annie were there and it was just the doc (sans Fellow) on the other end. It was probably the best I had been in the, at the time, 8 1/2 years I had been dealing with this disease and it ended with no further discussion other than to keep on doing what I was doing. That continued well into the autumn months.

By mid-late autumn, the only differences I noticed were increasing dyskinesias and dystonia.

Dyskinesia is a function of too much drug therapy – or maybe best stated as “too much in a dose”. That is a pretty fast thing to resolve if you have the freedom from your doctor to “experiment within the written prescription” a bit. It took me about a week to resolve it

Dystonia is a function of the ever-progressing disease itself where a muscle will tense up and do its own thing. When it’s in my toes it actually feels good as they expand as widely as they are able – think of a peacock strutting his feathers. If it’s in my hand, it’s a few minutes of fingers crimpled together in an odd, almost useless formation. But it my neck, it hurts. It’s probably noticeable to most as it twists my neck and sometimes tugs at my jaw depending on the intensity. These last for about 20 minutes in the morning … or later in the day if it hadn’t happened “on schedule”.

In going back to the appointment the other day with Annie in tow, we Ubered our way to the office. After the speed demon nearly got us killed pulling out of my neighborhood, my body was already in a state of discomfort. Even though we were way early, my 3:00 p.m. dosing was still going to come up in the middle of this and I could tell it wasn’t going to go well. Sure enough, as the temps outside were quite frigid, the heat in the office suite was set to “ROAST” and I was reaching the browning phase of the cook cycle. So there went the sweat, tremors and probably the most cruel bout of neck dystonia I’ve ever had.

The hot shot, skinny Fellow fellow with pointy-toe Cowboy Boots came in and asked how we were and why I won’t consider DBS. _{(This was an immediate reminder back to my second appointment in this office almost 9 years to the day before when this doctor who is no longer with the practice stormed in and seemingly said, “Hello, Mr. O’Brien nice to see you we believe you have Parkinson’s and this is what we’ll do.”)} “It’s a miracle!” he said.

“Well,” I began, “what makes it a miracle?”

“It just is! People see these symptoms melt away and they are down to far less or no medic… well some drop to no medication and build back up as they see necessary.”

Annie was bold enough to ask, “what has been YOUR personal experience?” What she was trying to get at and soon clarified, was to whom, with young-onset PD, has he spoken who shared their personal experience with him.

I don’t think he ever answered that question. Though he did admit

the word “miracle” rarely comes up in medicine and science.

Again, I was a ball of sweat and by this time my neck dystonia was putting on quite a show. Still, I was able to do all of the motions they asked although not as well as I would if we were talking through the computer cameras with me in my natural habitat.

But his DBS talk-up was much like a salesman at my door trying to get me to buy a vacuum or something I didn’t need. And what used to come with a seeming promise of many more medicinal combinations seemed to point almost exclusively to the DBS. To say Annie’s experience in science and animal welfare, her inquisitive nature, her own discomfort with “people doctors”, and knowing the level of my own discomfort with invasive (I don’t care how “minimal”) procedures came in quite handy here. If it was just me in that room, I fear that I may have walked out of there having signed my life away.

The good doctor (whom I am very much fond of in personality and practice) said DBS is just something to consider and nothing I need to do right away. The process would start with a morning observance without having taken a dose or two of meds to see where things stood without. That would be followed by taking the dose (late) to see where things stood WITH the meds. It would also require MRIs and measurements in cognition and such before the procedure could even take place. “Of course, at your age, you have nothing to worry about,” said Mr. HotShot Salesman Fellow w/Cowboy Boots.

Once the noodles would be installed in my brain and the control panel in my upper chest, it would still be another six months before everything was adjusted, targeted, and pointed correctly. So it still wouldn’t be an immediate solution.

So we left the office with the promise that we would allow for discussion with a neuro-surgeon, but more importantly with someone who has truly experienced the DBS procedure. Hopefully there is an honest soul willing to sit with me and talk about it.

The dystonia stopped the instant I was on my driveway _{(after we rode home in a Tesla with rap music; I was also cooled down to the point where I didn’t steam up the windows… of which made up about 50% of this vehicle)}. I was safe and settled once more.

Please know that I am grateful for modern medicine and technology. I would certainly be grateful if ever, God forbid, a situation arose where it was crucial in saving my life. But something elective which might do what it’s supposed to but isn’t a guarantee, is something I want to have all of the data on before I let you invade me – no matter how “minimally” – with it.

This journey as far from over, right now I am able to function close to normal at least 70% of the time. Please let me know when the DBS procedure is more like trying on a pair of shoes.