Today I agreed to donate my brain to medical science. (I’ll pause here to allow regular readers of my published opinion pieces to stop laughing.)
Twenty-two years ago, after an afternoon of heavy yard work, I reached for a cold beer and sat down to rest. As I brought the bottle up to my mouth I couldn’t keep my hand from shaking. I had to hold on with both hands to keep from spilling. That had never happened to me before. I refused to believe it was because of the onset of old age, chalking it up to the after-effects of unusually hard work on a hot day.
But at my next doctor’s appointment, when I was asked to hold a tongue depressor in front of me, I couldn’t hold it steady. I explained my older brother had been diagnosed with Essential Tremor, having undergone deep brain surgery to reduce the symptoms. The doctor told me this neurodegenerative disease is inheritable. He added ET to my medical record.
My symptoms have had a relatively mild effect on my life. No longer able to type, I have to use voice recognition technology to enable me to keep writing these columns. I had to give up model airplane building and switch from finger-picking my guitar to thumb strumming a ukulele.
Those comparatively minor sacrifices, plus coping with modifications in personal hygiene tasks and suffering from occasional social embarrassment, have been my only complaints about living with ET. But as a member of Facebook’s Essential Tremor Awareness Group, I have learned of the many others, of all ages, whose lives have been substantially challenged by the disease, many from a very young age.
When I learned of the study being conducted by the University of Texas Southwestern Medical Center to find future therapies for those suffering from severe cases of ET, donating at death to help others seemed the right thing to do.
The study requires a neurological and cognitive assessment every 18 months to track the progress of the disease. To determine my eligibility to participate, I was given a test of the shakiness of my hands. I was sent the image of an Archimedes spiral that looks like this:
I was asked to copy that freehand with each of my hands. Here’s what my right hand produced:
My first cognitive test question was, “Who is the President right now?”
It pained me to write “Trump,” since I well remember how, during his 2016 campaign he ridiculed a journalist for his physical disability, imitating him by swinging his arms around wildly. That hit home with me at the time because my Karen, suffering from spinal stenosis, sometimes appears to be conducting a symphony orchestra while she walks unsteadily across the room.
It came as no surprise when I was told I definitely qualified to be included in the study. The next step is to undergo my first comprehensive assessment of cognitive and neurological symptoms. It will take place on January 19 and 20 in two-hour virtual Zoom sessions in our home.
I’m looking forward to it.