I haven’t written a word since the 26th of June, 2021. There are many reasons why I haven’t. Some are hard to explain, some may sound like I am whining and some will be obvious with this post. I’ll cut to the chase and just say, most of my absence had been due to Parkinson’s and its advancing symptoms.
Shortly after my last post in June, my hands exploded with tremors. It wasn’t just a mild increase, it was a dramatic escalation. My med’s didn’t work anymore and I shook constantly for hours on end. It was all I could do to hold onto my phone let alone text on it or type on a computer. Even now, I have to be slow and make many corrections as I go to write this. The “good days” are only those when the tremors subside to the point I can feel quiet for a while without my hands flopping around. The word frustrated has gotten to be an oft used answer to the question “how are you.”
On the 15th of June, I had what is called a DAT scan to verify my diagnosis of Parkinson’s – it turned out to be positive. With that diagnosis, my doctor changed my medicine regime and started talking about DBS (Deep Brain Stimulation) surgery as a next step in treatment. I had heard of the procedure, studied everything I could get my hands on and watched Youtube videos of the procedure. I wanted to have a base of knowledge to ask questions during my next visit. What I heard from my doctor, and her answers to my, and my wife’s, questions lead me to decide to go ahead with the DBS procedure.
The DBS process is not as quick and simple to go thru as I thought. It is slightly more complicated. First, I had to interview the two most prominent vendors of the devices and associated hardware to determine which one I wanted to use. My research had not uncovered the fact there were multiple vendors with different types of “gizmos” to use to control the stimulation process. My doctor recommended two that she has worked with for years. Both are good, both have good track records, both have plus and minuses relative to their products.
The basics of both systems is very simple. There are two leads or electrodes inserted into the brain through two small holes (14 mm) in the skull. Those leads are then attached to wires that run under the skin to a gizmo implanted under the skin at the shoulder, similar to a pacemaker. The difference is in the electronics package software and battery configuration.
On August 17th, I interviewed the Medtronics representative. Medtronics has been around for over 20 years in the pacemaker field for heart patients. In the past 10 plus years, they have moved into the DBS field. Their equipment has a base of thousands of patients world wide. At present, they only offer a unit that has to be surgically changed every 3-5 years for battery renewal. They are trying to come out with a rechargeable unit but it is not on the market yet. At first, I thought that was a good way to go. Who wants to worry about recharging a battery every few days or weeks or how ever long it would last. That’s just one more thing to keep track of besides a strict medicine regime.
On August 24th, I interviewed the representative from Boston Scientific. They have only been in the DBS arena for approximately ten years. Their claim to fame is developing technology to help people regain their hearing through implants and similar controller gizmos. That technology involves similar techniques to stimulate auditory nerves to sound. They took the next step and developed a unit for DBS patients to help quiet tremors. The big difference is they offered a rechargeable unit that supposedly last fifteen years. The battery needs recharging every week or so depending on how the device is set up, plus a number of other factors.
The recharging unit is quite simple. It is a collar type device you put around the back of your neck, with the legs hanging over your shoulders. There is a pocket in each leg to hold the charging unit, depending on which side the device is implanted. That unit has its own charging station to keep it ready. I asked about what happens when the lights go out for days and you can’t recharge. If the collar is kept charged, it will outlast any power outage we might incur in this area. The process is much more sound than I can describe it here, and I felt comfortable it wouldn’t be a problem. Having surgery every 3-5 years didn’t appeal to me.
The fact they had developed a technique to help hearing impaired patients using brain waves and electronic signals coming from the brain intrigued me. It was totally different from the other vendor. If they could help a person regain hearing via implants in the brain, they could surely help reduce Parkinson’s tremors in a similar manner.
The first vendor is the pioneer in the pacemaker industry and has a long track record of success. However, their unit was first designed to monitor electrical signals from the heart – not the brain – to stabilize cardio rhythm. Going from monitoring heart data to brain data, while unique and well done, did not appeal to me from an engineering standpoint.
Going from auditory implants to Parkinson’s implants triggered my engineering curiosity. It made sense as the next logical step. The brain is a marvelous and complex organ or group of organs that make us what we are. If you can improve hearing by monitoring and stimulating brain waves, what else can you improve? Seizures? Epilepsy? Dementia? Alzhiemers? The technology won me over.
After talking to my wife about it, and going over both sets of data, I decided on the Boston Scientific unit. The next step is having a neurological evaluation. From what I have gathered so far, I have to take a series of tests, and evaluations to determine my mental state of mind about the surgery and cogniscent level. There are time frames doctors use, among other things, to determine the best time to do the surgery. They don’t want to do it too early nor can it be done too late in life. They look for that middle ground or optimum time frame where it will do the most good. I am in that middle ground area now, so we are proceeding.
My doctor gave me a referral to a test provider that was not in my insurance network. I will not use them to avoid the hassel’s of having to be the focal point for handling the submission of paperwork for payment. That is just one hassel I refuse to take on. The surgical procedure will be stressful enough, I don’t need to deal with out of network providers afterwards.
Following my evaluation, I will meet with the surgeon and go over the process. It is basically a two step operation. Step one, involves implanting the electrodes into the brain through two holes drilled in the skull. There will be MRI’s and CT scans to guide the surgeon and locate the target area. That target is a small area at the base of the brain stem. (For you electrical techy’s, it’s the canon plug where the brain plugs into the main wiring harness of the spine.)
I will be awake for this part with my head locked in a device I call “the drill jig.” This apparatus keeps my head in exact alignment for placement of the electrodes. Once they are implanted, the Boston Scientific technician will assist the surgeon with stimulating that area to see how it affects my tremors. They will ask me to hold my hands up, make an adjustment to see if the tremors stop, and record the data. This will be my baseline data for later programming.
After an overnight stay, I go home for a week before going back to have the gizmo implanted in my shoulder area. That surgery will be done under anesthesia as an outpatient. During this part, the electrodes in the brain are attached to leads running to the gizmo. Those leads will be fished under the scalp and down to my chest from an incision behind my left ear.
The brain needs time to heal as the body doesn’t like foreign objects being implanted. As a result, there will be a month long delay in turning on the device. I go home, take my med’s and wait. It would be futile to turn on the device while the brain is trying to heal. Any adjustments made would not be proper at this point in the process.
During my month wait, I have to follow very strict protocol for wound care to avoid infections. The list of things to do includes using clean pillow cases and sheets, changing often. The big killer is no pets on the bed. We have two furries that join us at night, so that will force me into the spare bedroom behind a closed door. Sorry Poody.
PROGRAMMING THE DEVICE
My first visit to the doctor after surgery will be the initial set up of the device. Using the baseline data gathered during the first surgery, she will input and adjust it to my current conditions. As with almost all medical procedures, she will start slow and try to give me some relief for longer periods of time. Over the course of treatment, she will make further adjustments, approximately 1-2 months apart, and eventually spread them out over a longer time span. When the first settings have been programmed, we “go live” and turn the device on. That is still weeks away, meaning I’m going to have to be patient, something that has been hard to do lately.
DBS will not stop or cure my shakes, but will give me a more comfortable lifestyle. The doctor says the device should last fifteen years – until I’m 90. My goal is to be able to do more of the things I lost when the tremors exploded. To be honest, the massive increase in shakes scared me. It took away my focus, my ability to do “normal” things such as eating a bowl of cereal for breakfast without throwing it all over the table. Or drinking a cup of coffee. Taking my med’s has become a chore. I have to use two hands to steady a glass of water enough to drink and swallow them. Trying to carry things like a cup of coffee or a bag of chips is a dissasster. I spill the coffee, and the chips sound like I’m trying to crush them. Stealthy, I’m not. My current tremors are not fun at all.