This is my first post since May 31st. I’m not sure where to start. My hands are still shaky, so this may take a while to write. I suppose I should start with the first sign things were about to change.
On April 26th, I saw my neurologist and told him I didn’t think my Parkinson’s meds were working anymore. After a brief exam, he gave me a referral to a motion specialist. I saw her on the 18th of May, hoping for some positive answers. My hands were a mess; for a writer, that’s not good. I was at a point where I could not use my phone or computer. I had to use both hands to use my phone, and even at that, it was next to impossible. I tried to write, but my right hand shook so bad I couldn’t control the mouse. I tried to use my left hand to control it, but that was awkward at best. Frustration set in, and I gave up.
Without the ability to write, I felt lost. Oh, I could still do crude stuff like kill weeds and trim shrubs, but the detailed stuff was gone. It seemed as though when I even thought about doing something detailed, my hands exploded in shakes. My glasses came apart one day, causing one lens to fall out. It took me three hours to put that damn tiny screw back in the frame to hold the lens. I was a wreck.
The May 18th appointment started with a thorough exam, answering many questions, and a referral to have a Parkinson’s test at a local imaging company. It is called a DAT test. My new doctor said she wanted to know for certain that I indeed have Parkinson’s. In preparation for the test, she took me off of all Parkinson’s meds. The test is a nuclear-type test, meaning I was given an injection of some low-grade “glow in the dark” material and had to lay on a table for almost an hour while a machine took pictures of my head.
My test was scheduled for the 15th of June. From the 18th of May until the test date, I had no meds. Now, my whole body began to shake – I felt like a walking vibrator. My knees shook if I stood too long; I couldn’t control a spoon trying to eat a bowl of cereal for breakfast; my teeth started chattering. I was to the point of begging for the shaking to stop. My hands fluttered so bad, the muscles in my forearms hurt as if I had been doing some strenuous exercises. Sleep was difficult. It became a mental game of trying to find some peaceful thought to concentrate on until I fell asleep.
June 15th – Test day
I had to be at the test place by 10:00 am that morning, after fasting from 6:00 pm the night before. After checking in, I was given a small pill to take. The pill was to help the next part of the test do its job. The pill was to focus the glow-in-the-dark stuff in my brain and not somewhere else in my body. The technician went to a metal box similar to the type you see TV when people carry nuclear stuff. He pulled out a metal syringe about an inch in diameter and emptied its contents into my arm via the IV line he previously inserted. After that, I waited until 3:00 pm for the scan part of the test.
My wife and I made the trip back for the last part of the test. I was ushered into a room with a long table attached to a rotating head. It looked like an x-ray machine. The technician positioned me on the table, placed some hold-down straps on my head and chin, and tucked some metal side plates along my arms to keep them from falling off the table. After that, it was fifty-five minutes of boredom. The machine was quiet, but I still focused on peaceful thoughts to keep my hands quiet.
June 16th – Test results
My appointment to review the test results was at 1:00 pm. I was anxious to know the results but was already certain they would show Parkinson’s. She told me it definitely was Parkinson’s, and I had two options. Option one was to increase medication frequency and add a new one to the mix. The doctor increased my “dopa-brothers” (carbidopa-levodopa) medication from twice a day to four times a day. She also added a new pill called primidone, to be taken twice a day.
Option two was DBS or Deep Brain Surgery. I knew about DBS and have done some research on it. It is a surgical procedure that has been in use for over twenty years. Its technique involves implanting small electrodes in the brain and attaching them to small leads that run to a chest implanted “gizmo.” The gizmo is then tuned to specific frequencies that counteract the shaking impulses in the hands.
I’m having a hard time deciding to let someone mess around in my head. Technology has advanced the procedure to the point the gizmos are now rechargeable. Patients no longer have to worry about surgery every 2-3 years to replace a battery. The only thing I asked my doctor was whether or not I could pick up Radio Free Europe after the surgery. She looked at me and said, “If you do, you’ll be the first.” She may not have liked my smart-ass humor, but at least she gave me something to look forward to. I’ve never been the first at anything new.
I’ve taken the path that I will give the meds a one-month trial. I will have the surgery if the meds don’t reduce or, at least, control the shakes at a tolerable level. The hard part about this option is this – at what level am I willing to accept shakey hands? The surgery literature we got says tremors are reduced by 80-90% and last a lifetime. That success rate sounds pretty good. I’m just a little nervous about people messing around inside my head.
A Long Fight
I don’t think I’m cut out for a long fight with this shit. Parkinson’s disease is only one side of it. The other part is what’s going on inside my head right now. Keeping my focus on positive things is a real struggle at the moment. I am, or was, a pretty positive type of person. But when my hands exploded with the shakes, and I lost the ability to write, feed myself, or even do mundane tasks around the house, it scared me. I felt as if I had lost myself as a person who enjoyed writing, working on detailed projects, and being the “doer” around the house. That was all taken away from me.
As some of you know, I took care of my mom for fourteen years. The last five, or six, were the worse. She was a very negative person during that time. Mom was fiercely independent, and anything that challenged that independence was a “kick in the pants” to her. We argued over that issue more than almost any other. The only issue we argued about more was whether or not her doctors were withholding a “silver bullet cure” for her ailments because Medicare wouldn’t pay for it. She utterly buried me in negativism. It got to the point I had to fight with myself to see her in the nursing home. I didn’t want to go through another session with her arguing about something.
That negativism jumped to the forefront of my mind when my hands went south. I’ve fought ever since, trying to refocus on positive things. I’ve had to come up with alternate ways of doing things. Lucky for me, I am somewhat ambidextrous. When my right hand is going crazy, I can still do many things left-handed. Sometimes it’s a little clumsy, but I can do it. As for my writing, some of my dear friends have offered suggestions.
Voice Software for Writers
My dear friend Trina from the UK sent me a couple of links for voice-activated writing software. Duh! Why didn’t I think to search for that? Maybe I was too involved in my own pity party to think about it. There are some excellent options available. Right now, the cost is an issue. The software is not that expensive. The issue is my computer – it’s too small to load the new software. I don’t have enough RAM or disk space to load it. So, we’ll have to save some shekels before loading the new software on a new computer.
I was in such a negative funk it never occurred to me there was a voice option available. Negative thoughts kept me from doing positive things to find new solutions to my problems. I let all of the “whoa is me” attitude of my mom jump to the forefront of my life and couldn’t see the forest for the trees. My secondary challenge is to stay positive. I need to use my engineering skills to invent and search out new ways of doing things. I cannot let accepting the status quo be an option.
Thanks to my wife, my many friends, and my daughter Jennnifer, I have people who are kicking my butt to stay positive. I will keep you posted as things progress.
God bless you all.