Ms. Dystonia Returns!

Don’t be fooled by her cute smile , high boots and nice figure – rather, see those horns, the tail, and that 3-pronged pitchfork with which she uses to torture any poor Parkie, like me, whom she sets her eyes upon. As my neurologist said, Ms. Dystonia had returned, WITH A VENGENCE!

By this time, the left toes curling  and foot cramping had gotten completely out of control, so much so that we decided to try something radical. We decided to swap out my current Medtronic battery/neurostimulator with a newer, more advanced Boston Scientific battery unit. The Boston Scientific battery, part of their Vercise DBS system, is a smaller, rechargeable, battery that can last 15+ years! For those of us with the older Medtronic hardware, the Vercise unit has two other fantastic features:

1. It can work with the old Medtronic leads – meaning you can replace the Medtronic battery with the Boston battery and yet keep your Medtronic leads!
2. The Boston unit – based on cochlear implant technology rather than the older pacemaker-based technology used in other systems – is powered by Multiple Independent Current Control Technology (MICC). This allows for refinement of the size and shape of the stimulation field to customize therapy for individual patients. In layman’s terms, it means your doctor can use variable amounts of ‘juice‘ (electricity) on each contact and the areas in-between, allowing more adjustments and therefore better therapy for the patient. For instance you could ‘shape‘ the electrical field between contacts 1 and 2 by specifying 2 amps spread between the contacts (like 75% on contact 1, and 25% on contact 2) This can be very helpful if you have an area around a contact in the brain that is extra sensitive or close to other critical brain areas – in that case, you might want to put a lower amount of juice into that contact.

This is a very basic description of the technology. Click here to see more about Vercise tech, or here to learn about their replacement battery.

So, in January 2020, I went in for early DBS battery replacement, where my neurosurgeon swapped out my old Medtronic battery and replaced it with a new, shiny, Boston Scientific battery! I have to recharge it once a week; but I can do so in an hour or two while watching TV.

Now although this is ‘very cool‘ tech (and y’all know I’m a techy guy!); we tried everything we could with the new unit – varying the voltage between 2, 3 or even 4 of the contacts; and even more wild settings not possible with the Medtronic – all with the same result: Either none effect at all, or even a worsening effect on the dystonia, (ugh); or it caused, once again, bad side effects such as those severe muscle contractions… some of which were just as nasty as the dystonia!

Throughout the latter part of 2020, we all continued battling COVID, and I continued battling Ms. Dystonia. By the beginning of 2021, she ruled over a large amount of my daily life – I would guess somewhere in the order of 6-8 hours a day. During those hours, my toes would cramp and curl down with such force they would feel, at times, like they were going to dislocate! (That has actually happened, I hear, to others with Ms. Dystonia – she can be heartless!) The pain – was almost unbearable. It also began literally changing my toes from the inside out – twisted  downwards, sometimes under other toes, and constant pain… I often said they were beginning to look like they had been run over by a Mac truck! Since the STN DBS wasn’t doing anything for this, we next tried some new drugs – and I mean new, just released stuff. Inbrija, Ongentys, Nourianz… all of which either: Didn’t do next to anything for the dystonia or ‘off‘ times; or they helped a bit but produced bad side effects! I was (and still am) taking Sinemet every 2 hours just to try to keep the cramping toes at bay; then there’s Neupro, COMTAM, Azilect, Amantadine – all of which helped, but since the raising level of Sinemet in my bloodstream caused dopamine levels to rise and fall dramatically in my brain, I was left with massive dyskinesia. But even with all those meds, I still ended up, almost every evening, with the left toes so cramped down I couldn’t separate them, and the foot so tight that it felt like I was walking – if I even could – on gravel!  I used to love to read in the evening while relaxing; now it’s “Relaxing?? HA!”  I’m usually in so much torture that all I end up most evenings laying down trying to withstand the pain, or sitting in front of the TV trying  to figure out how to build some kind of crazy device I could shove in-between or under these accursed toes to keep them from cramping!! I’ve had to completely give up exercising and my Tai Chi (for over a year now); the lack of exercise, along with the constant cramping muscles and then wild dyskinesia, causes me to burn more calories each day than I can take in. So I’ve lost 25-30 pounds during the last year. I can’t travel anywhere – not because of COVID but because I couldn’t WALK wherever I went! But the worst of all was that I was losing my famous optimism; I was simply existing rather than living life. It literally felt like a living nightmare!