An Adjustment for Tremors: Focused Ultrasound
This all began when my wife turned me on to a procedure called focused ultrasound (FUS). This is similar to deep brain stimulation (DBS), though, in its most important aspect, it differs in the fact that it doesn’t involve using a drill to stop tremors.1
Instead, it uses ultrasound beams to "correct" the brain, focusing on the affected region. Currently, this is FDA approved, and it is becoming more and more prevalent, so it’s far less science fiction and way more science fact.1
To find out if I was eligible for this, we scheduled an appointment to talk to the professionals at Penn Medicine in Philadelphia who perform this operation. For the first time in ages (12ish years of tremors and 7ish years of diagnosis) I felt optimistic about my predicament. You’d think that was a great thing, but every positive in the medical game comes with certain drawbacks.
Waiting to be approved for focused ultrasound
For one, I’ve never been one to believe in the divine hand of God or fate appearing to rescue me from the crap sandwich that is Parkinson’s. I credit that to Admiral Jim Stockdale. He concluded, after a lengthy POW experience in Vietnam, that the ones who do well under indefinite lengths of grueling circumstances are the ones who focus in the moment. This is as opposed to dreaming about a magical escape from their circumstances. Should that not happen...
Thus, prior to the appointment, I tried not to get my hopes up for a solution for tremors.
Nevertheless, every time I thought about the possibility of being "bettered" (as opposed to permanently "fixed"), a part of my stoic wall disintegrated. On one hand, I found hope for an adjustment (Note: neither FUS or DBS is a cure for Parkinson’s). On the other hand, I still hadn’t been accepted for the process, let alone undergone the procedure. Here, I might not get accepted (because sometimes the Glass is half empty).
Now, I was telling more people than just my wife and parents to send positive vibes my way because there was an option. The further I went, the more I noticed that this was making me start to notice all of my Parkinson’s symptoms in overdrive.
An increase in my Parkinson's symptoms
For instance, my tremors were acting off the hook. There were a lot of times that my meds wouldn’t even shut them off. Meanwhile, the extra dopamine was coming out of my left foot in dyskinesia shakes that were super intense. My head was doing the waltz, as I call it, or the "Stevie Wonder," as my wife and sister call it. I was becoming more aware of my body movements around other people, too.
I was definitely in full "GRRR" mode.
As my tremors wouldn’t shut off, I was doing my best to conceal them when I was working with other people at the job. There were times where I felt like I was in molasses slow motion on the keyboard and mouse. This left me with the option for finally learning Dragon voice to text system, but that only goes so far for most routine processes involved with navigating a computer. However, when it comes to typing sentences, I’d say it picks up about 90 percent of my words correctly, so I’ve got that going for me.
Additionally, my Frankenstein feet and legs would bounce back and forth from the left leg to the right leg at random times. Here, the dystonia and rigidity mixed with the dyskinesia, tremors, and frustration like the 9-headed hydra. Every time I would cut off a head, another one would appear while the other 4 heads attacked more viciously.
What’s more; I still didn’t have a yes or no to if and when.
Finally meeting the neurology team
At home, Sparky was ticked off about my inability to walk him enough. My wife felt like I wasn’t confronting the reality of Parkinson’s leaving me unable to do all that I once did. I felt like I wasn’t my best me for anyone I needed to be my best me for.
It was like I couldn’t win, and my consultation was still a million years away.
Despite this wait, there was an upside. All things considered, I was able to get in fairly quickly compared to my expectation. When I did get in (only a couple weeks wait), I was very impressed with the neuro-surgery and neurology doctors that I met.
I can't overstate how incredibly nervous I was about whether I would qualify for the procedure. After all, if there’s a magical procedure that can stop my tremors without going inside my skull with sharp objects, I’m down (as the kids would say). Still, pessimism and inability to get my hopes up was ruling the day. What would the verdict be?
I qualified for FUS, but...
Nevertheless, while I qualified for FUS, there was one problem: they can only do it on one side. The other side would require DBS. For a person with 40 percent of my tremors on my right side, my 60 percent left side wouldn’t be fixed unless I allowed myself to be fixed with the much-feared DBS. This left me with a multiple-choice question with the following potential answers:
A. FUS on my dominant right. DBS my left side next year after the surgery heals.
B. DBS both sides in a few years, like I planned originally.
C. DBS both sides now.
D. Nothing other than medicines I’m using now.
I was definitely facing a big decision. What to do? Read on in my next article: "An Adjustment for Tremors: Deep Brain Stimulation."
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