It has been nearly 18 months since I began a new journey in living with Parkinson’s disease.

In August 2018 I underwent the first surgery to have a deep brain stimulation (DBS) device installed in my chest with lead wires going from the left side of my brain, down behind my left ear and then connected to the small box.

The surgeon told me at that time it was something that worked excellently for some patients and not so well for others.

I wanted to get some control over my hands so I could go on writing and typing. I’ve wanted to be a writer since I was 10 years old, but constant tremors were getting in the way of that.

Not only did I have trouble holding a pencil, but I also had trouble using the keyboard. It would take two or three times as long to do any work on the computer because I was constantly having to go back and take out repeated letters or sentences.

Following that first surgery, where they drilled a hole in the top of my skull, I couldn’t wait to see if it “took.” I kept watching my right hand to see if it was still showing signs of tremors. The surgeon said it would be a few weeks before they could actually begin programming my device.

It was nearly six weeks. I watched in amazement as the tremors subsided with each addition the neurologist did in setting the device right for me.

I went back three more times before I began talking about a second surgery to control the tremors in my left hand. That meant another surgery to go in on the right side of my brain to install lead wires.

The surgeon cautioned me that it could have side affects and that it didn’t mean because it worked so well on the left brain that it would automatically work on the right brain. It might. It also could impact my speech, which I might or might not get back.

I had faith. I believed it would work.

I went through the second surgery in March 2019. About six weeks after that surgery, the neurologist met with me to test out the program on my right brain. She tested it but didn’t set it up for the long haul yet. I went back in another month and she was ready to program the right side of my brain to see if it would stop tremors in my left hand. I watched as she kept going up the scale on the device until the tremors were almost gone in my left hand. Success!

I went back to the surgeon twice more for her to check the wound to see if it was healing properly and then to the neurologist periodically for her to check to see how things were working.

I was without tremors until just August 2019 then started experiencing some other difficulties.

I was frequently choking on my food or even a drink of water. I was slowly losing my ability to talk above a whisper. I started stumbling around the house and occasionally falling.

I went to the emergency room and was admitted for a few days.

During that time, they arranged for me to have swallow and speech tests with arrangements for therapy for these when I went home. I also went home with physical therapists and occupational therapists coming in and out of the house.

These therapies seemed to be working well, and I was discharged from the therapies in a short while.

I went back to the emergency room the day before New Year’s Eve 2019 with what seemed like a heart attack.

While in the emergency room I turned off my DBS device so they could get a clear reading on an EKG.

The batteries in my hand-held monitor were dead, so I couldn’t turn it back on right away.

I noticed over the next few days that my voice was getting stronger. I was choking on my food and drink less frequently. I was walking better — not perfectly, but better.

I made arrangements for follow up with the neurologist as well as my family physician. The cardiologist who had seen me in the hospital did several tests at that time to be sure he could rule out any sign of heart attack.

By the time I went back to the neurologist, I had begun to list the things that were different when I had my “brain turned off and on.”

When it was off I could talk clearly and loud enough to be understood. When it was off I could eat and drink without choking, although it was very hard to eat and drink with my hands trembling very badly.

When it was on, I could type or write and eat, at least get things to my mouth without them falling off the spoon or fork.

She arranged for someone from the company that manufactures and oversees the device to come back and meet with me. The technician spent an hour or more going through the original programming records, and he explained everything he was doing while he went. He took my DBS back to the first setting where my right hand had stopped trembling and we all noticed (my cousin Brenda was with me) that my head and neck were no longer trembling whether the device was turned on or off.

When the technician turned the DBS back on for my left side (right brain), my voice immediately dropped very low (as in quiet). My tongue felt like it was inflating, which, of course, I knew it wasn’t. But my speech was very slurred. I became unsteady on my feet and had to revert back to using the walker that I had been using most of the time before I went to the hospital the last time.

The technician explained that he could change the way the DBS pulsed inside my brain so it was alternating between different lead wires on one side than the other. It would use up the battery in my implanted device more quickly but might be safer, or I might find it more comfortable. The down side to that is the DBS is designed with a battery that will last about five years. I would probably have to undergo surgery in my chest to have the battery or the device changed more frequently.

And so, here I am, for the time being programmed with almost no tremors in my right hand and slight tremors in my right hand. I’m a little unsteady on my feet, but it’s nothing I can’t deal with by using a walker. I can write again and talk, but my tongue still feels like it is slightly inflated and I’m a little self-conscious about my speech.

But I started on this journey with faith and hope and plan to go on that way.