First Programming Session (#7 in DBS Series)
Updated: Feb 11
Some period of time post your surgeries, you will begin the process to program your new DBS device. This will likely take several visits, potentially over many months. How many visits will vary by patient ... it does not mean anything is wrong if it takes a while to settle into a program that works well for you. Remember, the brain and PD are both complex entities, there are many variables to consider.
The morning before we drove to Chicago, I asked my wife to record me getting up in the morning and going out to the family room to watch the morning news, just like I did every day. My hope was this was the last time I would use this process and I wanted to document what it was like as a way to look back upon my pre-DBS life.
(you can see how much the Dystonia was impacting my left foot. Many days, both feet were as impacted. This was the way I started my day for a couple years.)
I admit, I was optimistic, but there was simply no guarantee that I would be able to navigate any differently after DBS. I left for Chicago later that day feeling like it was the start of a new chapter for me, but was hesitant at the same time. What was I going to feel like? No way to know .... this was unlike anything I had done before.
Like we did for the surgery days, we had a nice dinner the night before. This time, I ate way too much. We did go out for my favorite stuffed pizza, so I knew what I was in for! Like before, we got an ADA room for ease in getting ready the next morning. At least it was a normal time appointment, vs 6AM for surgery!
My Dystonia did not disappoint, it was a challenge showering and getting dressed as I was to arrive at my appointment complexly off meds since the prior evening. It did relent and I was able to walk to breakfast and most of the way to the doctor's office. About 3/4 of the way there, I suddenly froze up, my feet curled under and I could not walk. Fortunately, there was a chair I could sit down in while my wife procured a wheelchair to get me the rest of the way there.
(Sitting in the waiting room, symptoms in full display).
There was a lot of extra activity for my first session as a result of my DBS being relatively new to market and me being the first patient at my hospital to use the new features to record symptoms and provide programming suggestions. As a result, my session may have lasted longer than normal. To me, it was simply fascinating. Lots of talk that was hard to follow at times, but everyone was very patient with my seemingly never ending questions. The room was full (just a regular exam room) with a Medtronic rep, my Movement Disorders Specialist, a student doctor, my wife and me.
(The Medtronic rep reading signals from my chest unit into her tablet for her and the doctors to discuss)
In a nutshell, each lead (one per side) has several transmitters (4 on each lead in my case) and some transmitters have multiple regions (3 in my case). This is so the stimulation can be "shaped" to avoid most side effects and best target the symptoms. As a result, each possible lead / transmitter/ region needs to run through a test to see if there are any negative results.
While each section was tested, I was asked if I felt anything unusual and then we went through the battery of finger tapping, toe tapping, etc. every person living with PD knows so well. It is an exhausting prorcess to go through, mine took nearly 2 hours (Most of the time being very symptomatic as the full effects of DBS are not yet enabled and I am still off my meds).
(you can hear me describing the unusual tingling in my mouth as the current is applied to one section of the DBS)
After going through each possible section, my doctor chose a good starter program for me. I then went through the normal tests to see that it was working ok (still on no meds).
(notice how much more fluid and fast my hand movements are after programming)
(me performing the "walk" test post programming ... This is around 10AM with no meds since 7PM the prior night)
Once we determined that the starter program was good to go, my doctor told me that he was taking the settngs down by roughtly half as it would be too much for my brain to adjust to a therapeutic level all at once. We would cut my meds by half and adjust the stimulator back up to the level I tested at over the next 6 weeks until my next programming appointment. It all seemed surreal at that point!
We walked back to the hotel to get our car and head home! In this video, I am still off meds, but walking fine! One of my friends commented that I had that "Travlota swagger" like the opening scene to Saturday Night Fever (we got a good laugh). All I needed was a paint can in my hand instead of the celebratory Stan's Donuts bag!
On the way home, we stopped for lunch with some friends to talk about the experience and enjoy some good food and company. We finished lunch at around 2PM and I took the first pill of the day (not because I felt like I had to because of my symptoms, but because I felt like I needed to get on some schedule)!
The Next Chapter
When I got up the next day, I took my meds in bed like I always did, out of habit ... not necessity. I almost felt like something was wrong getting out of bed with no dystonia and walking out to the family room to watch the news .... in some ways, my life had already made a significant leap toward a new chapter!
I found I was experiencing dyskinesia at significant levels for the first couple days. I talked with my doctor and he suggested that I go ahead and cut another 1/2 pill out of my dosage. I immediately felt better!
Not everyone will experience the same results, but after my first programming session, I basically was having little to no "off" periods and was taking 40% of the PD meds I took prior to my DBS being turned on.
The biggest changes were no more foot dystonia and no longer feeling like I was "controlled" by my medication schedule. I used to live my life in 3 hour increments around my medication schedule. Now, if I didn't have an alarm, I would have no idea it was time to take my next dose!