Finally the wait was over.
The first ten days following Phase 1 of my DBS surgery weren’t too bad. During the first week there wasn’t much discomfort, and the “honeymoon” period left me feeling okay. But once the honeymoon was over, man was it over. I felt awful again. I’d been forewarned about both the honeymoon and the potential depression when it went away, but knowing something ahead of time doesn’t mean you do not experience it.
I was originally scheduled for November 13 to have my DBS system turned on and programmed, a full five weeks and one day after Phase 1. Now, I don’t know what your belief system might look like, but I believe that our energy can bring things to us. I had been really white-knuckling my way throughout the waiting period, but on November 5 I got a surprise call from my neurologist to come in the next day for programming. November 6 is my mom’s birthday. She died of pancreatic cancer when I was 17, so I like to think that her energy may have played a role in making the wait a week shorter.
In any event, my husband and I were up very early again to drive into Boston. We arrived at my neurologist’s office for the big day, and I was both excited and nervous. What if it didn’t work? What if it wasn't what I expected? What if my expectations were too high? We sat in her office as my neurologist and her nurse powered up the iPad with the Medtronics software installed on it. Then it beeped, which meant everything worked, and the wireless signal was properly connected between the iPad and the devices in my body. Hurdle #1—it was installed right!
Each of the two leads placed in my brain has four contact points on it. One lead is in the right side, controlling the left side of my body, and the second lead is in the left side, controlling the right side of my body. Imagine the plug end of a set of headphones. It sort of looks like that, but instead has four silver metal strips around the end, each one having its own programmable contact point. We went through all eight that morning, beginning in the right side of my brain. The first contact felt good. I could move more freely as they gradually ramped up the voltage. Each contact point was increased slowly by half-volt increments, from zero to three volts. At 1.5, 2.0, 2.5, and 3.0 volts I got up and walked down the hall (or rather I tried to walk). It took about 15 to 20 minutes to test that contact, and the left side of my body began working pretty well. It was amazing. Hurdle #2—it worked!
We then moved on to the second contact on the right side of my brain. Immediately my mouth was pulled down on the left side as if I’d had a stroke, and I could barely walk. My husband was watching, and he said it was incredible to see how the different points and voltages changed my whole bearing, my face, my gait—everything. I could feel most of it, but he said it was wild to see it happening. Keep in mind that each of these contact points are about a millimeter or less apart. It’s remarkable how precise they need to be when placing these things in your brain—even a millimeter can make a huge difference. But we had cleared hurdle #3—it was having a positive impact.
It was a lengthy appointment, lasting over three hours. We went through each contact point, decided which ones felt best, and then settled on a lower-than-perfect voltage. This was done on purpose, because it’s a very individual choice to balance DBS and meds, and it can take 2 to 3 days for everything to “settle” in your system. By the time we had made the last decision, working out the medication dosage I would try for the next two weeks, I was thoroughly exhausted. Within minutes of leaving the hospital, I also started having terrible dyskinesias. This is the medical term for a variety of involuntary movements typically brought on in people with PD by having a lot of medication in their systems. In my specific case it was from having too much medication in addition to the voltage I had received.
DBS surgery is akin to an “always on” medication, which can cause dyskinesia just like the pills I take. When considering DBS and undergoing the mandatory testing to determine if you’re a good candidate, they’ll tell you that if you have a particular symptom that responds well to medication, you’ll likely find that it is also impacted by DBS. Parkinson’s is a deeply individual disease, with everybody having their own mix of symptoms and their own individual response to any treatment. As strange as it sounds, the current in my brain can replicate the impact of me taking a pill— except it doesn’t wear off until I turn off my system.
When I have dyskinesias, my movements typically consist of chewing the inside of my cheeks, puffing up my cheeks and blowing air out of the side of my mouth, flapping my arms uncontrollably over my head, and my neck wanting to turn violently to the side. This made for a pretty awful afternoon, and I admit to shedding tears as I lay down to take a nap, thinking, Is this what we went through everything for? Although the next day was somewhat better, I had bad dyskinesia three or four times that day, with each period lasting 60 to 90 minutes. When this happens it’s totally distracting, and my life is on hold until it’s over. I can watch TV or sit somewhere, but I find it difficult to engage with anything whatsoever.
Over the next two weeks we rapidly lowered my 10 daily levodopa-containing pills (a synthetic dopamine replacement) to 3 daily pills, which stopped most of my dyskinesias. I returned to see my neurologist after two weeks, and we upped my voltage. I have now gone from 17 daily pills to 6, and 4 of those are lower-dosage pills than my pre-surgery ones. (I take 4 prescription meds: two of them once a day; one of them 3 x a day; and one-half of the last pill 2 x a day.) I don’t feel amazing—like I want to get up and run a marathon. But I start to do things and then I realize, “Hey, I’m doing this!” Or I’ll do an errand or chore and I’m not exhausted. This weekend, after this voltage adjustment, I cooked dinner, I baked, I did laundry, and I went shopping. And I even bought a couch on my own at a huge furniture store. Nine months before, I had tried to buy a couch with my husband at another store, one maybe a fifth of the size as this one, and halfway through walking to the couch section I froze. It took me 45 minutes, an extra dose of meds, and my husband’s assistance to get back to the car. But this time I didn’t even need a nap after! Although I was a little stiff and tired by the end, my gait wasn’t nearly as shuffling when I walked. Many people have remarked that my face and expression have changed. I think they mean it doesn’t look like such an effort for me to smile, which is a result of the lessening of “facial masking” caused by muscle rigidity in my face, another side effect of having PD.
I’m also getting relief from exercise—specifically biking. The Peloton stationary bike we ordered arrived on November 7, right after I was turned on. Exercise is really beneficial for PD, particularly the kind involving “reciprocal motion,” defined as exercise that crosses the body’s meridians: upper/lower and left/right. Studies have confirmed the benefits of biking for PD patients, and since I used to love spin class, it’s a natural form of exercise for me, in that I don’t need to force my enthusiasm for it. The spirited instructors that you can access both live and on demand with the Peloton are pretty motivating, too! Since the bike arrived, I’ve been working my way up to 30 minutes at least five times a week. It’s great and so much easier now that I have more energy. Before, I could work out or live my day, but not do both. In fact, I did a 30- minute ride earlier in the day before I went couch shopping!
DBS is not a cure for PD; it’s another tool in the arsenal, albeit a very powerful one. I’m filled with gratitude for my many blessings, including access to doctors and specialists, great health insurance, a loving and supportive family, and the best husband in the universe. I’m so thankful for every PD patient and family who participated in clinical trials to bring us these treatments. And for my clients who stuck with me as I took six 6 weeks off to “indulge” in brain surgery. We truly do have so much to be thankful for this year.
Happy Thanksgiving!
You can find the rest of my Bionic Woman series here: