This week I’m going to continue telling you about my experiences with Parkinson’s as part of Parkinson’s Awareness Month.
Parkinson’s Disease is a progressive disorder that affects your movement. It develops gradually, sometimes starting with a barely noticeable tremor in just one hand.
But while a tremor may be the most well-known sign of Parkinson’s disease, the disorder also commonly causes stiffness or slowing of movement.
In the early stages of Parkinson’s, your face may show little or no expression or your arms may not swing when you walk.
Your speech may become soft or slurred. Symptoms worsen as your condition progresses over time.
I have had all of these symptoms at one time or another. I’ve also had a condition known as Dyskinesia. It is the reason that finally convinced me to have the DBS surgery.
My original neurologist was Dr. Gary Reese in Scottsdale. He had discussed with me about the possibility of DBS surgery several times in the past. He cautioned that any time you are drilling through the skull and working on the brain there were risks involved.
That was all I needed to hear to not consider it as an option. I was responding well to the medication. But I got to the point where I was taking too much medication and I developed dyskinesia. I saw two videos of myself and I didn’t know that my head was tilted and turning from side to side. I also twisted right out of my chair at a Monday night dinner at The Club.
Dr. Reese told me there were two places in the Valley that were doing DBS surgery and both had good success rates. One was Barrows Neurological Center at St. Joseph’s Hospital in Phoenix. The other was Mayo Clinic and since I had Mayo insurance due to Diane being employed there, there was little question as to where I would have it done.
Dr. Reese’s honesty cost him a patient. Since I was going to have the surgery done at Mayo, I had to start seeing a Mayo neurologist.
Deep Brain Stimulation involves implanting electrodes within certain areas of the brain. Or, the electrical impulses can affect certain cells or chemicals within the brain.
The amount of stimulation in deep brain stimulation is controlled by a pacemaker-like device placed under the skin in your upper chest. A wire that travels under your skin connects the device to the electrodes in your brain.
DBS is being used to treat a number of neurological conditions such as essential tremor, dystoria and it is also being studied as a treatment for epilepsy, cluster headaches, Tourette syndrome, chronic pain and major depression. Most of the surgeries are performed when the patient is awake, however, there is a physician at Barrows that can now do a successful procedure when the patient is asleep.
There are three surgeries. One to install the leads on the left side one to do the right side and one to install the stimulator device
Once they are all installed, you are called back a fourth time for the big moment . . . turning on the device and seeing how well they did with the placement of the leads.
I had been brought into the room in a wheelchair and when they turned on my device, I was told to open the door and walk to the end of the hallway and back.
I did so without hesitation. A nurse on the floor who had seen me wheeled in said, “It’s a miracle.”
