Essential Tremor and Deep Brain Surgery, Pt. 2

Doctor visits still provided no new information on my tremor. Then we were referred to the Leahy Clinic in Boston. […]

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Doctor visits still provided no new information on my tremor. Then we were referred to the Leahy Clinic in Boston. This was supposed to be the cutting edge of medicine in the 1940s and the examinations seemed thorough. Regardless, no conclusions were reached and no recommendations were made. My shaking remained a mystery.

I tried using my left hand but couldn’t get into the swing of it and switched back to my two-handed writing method in desperation. My second year in high school I started a course in typing. This seemed like an easy way to get passing grades–I never realized this would eventually be my salvation.

My popularity got me elected sophomore class president, but my scholastic endeavors continued to suffer. I jumped from subject to subject thinking I would find something fairly easy that I could use in the future. The principal, for some reason, took a liking to me and figured out a curriculum I could fathom–I got a diploma under the heading of Civic Arts. Never heard of that before or since.

Not long after high school, I was very fortunate to get a job as a lowly floor man, moving product around in a factory. This was at the start of the Korean War. I was called by the draft and got the prestigious title of 4-F (unfit). The shaking kept me from being a warrior. Everyone, including my parents, told me how lucky I was to the point that I believed it, but living it became another story. I looked healthy and normal to the citizenry and often heard, “Why is my son over there and you’re here?”

My saving grace at this time was a young woman named Nancy. This was the start of a love affair and an association with her family that exceeded my expectations. I courted her even though she lived 90 miles away. I also became disenchanted with my humdrum job. At the same time, Nancy was preparing for college. If I was going to marry her, I couldn’t let education come between us.

Can you imagine trying to get into any school of higher learning with a diploma in Civic Arts? Well, I applied to Worcester (MA) Junior College and chose Industrial Engineering (IE) as a major. I was accepted with much reluctance and told outright that I would fail in a matter of weeks. Regardless, the dean said they would be glad to accept my money.

I enrolled in the college’s evening school. One of the most trying of all my courses was Engineering Drawing. A greater part of the evening students were draftsmen. Some had as much as two years experience and ran circles around me. The more I tried, the worse it got. Not only was it difficult, but I was green with envy. I could spend hours, sometimes a whole Saturday, on two very simple drawings. I ended up with more eraser smudges than lines.

After a couple weeks of this, I walked out of class. The instructor, Mr. Angevine, caught up to me and asked, “What’s the matter?” I explained my problem and that I was not suitable for any type of engineering. He asked a few questions as to my future goals and made me a proposal: If I presented him with two drawings a week on time and did my absolute best on quizzes and tests, he would give me a “C” for the course. That was the best deal I had ever gotten. The eventual outcome: my graduation with a GPA of 2.87.

I now had the confidence to try getting my bachelor’s degree from an accredited institution. I enrolled at Northeastern University in Boston, continuing in IE. Soon my confidence began to wane, as I became just a number. Northeastern didn’t have that small school atmosphere I was used to. Most classes involved hours of lectures that required nonstop note taking. There was no asking the professor to repeat part of the lecture. I tried to get the notes on my own, but would ask to check my neighbors’ notes and correct mine during the break.

While at Northeastern, I occasionally tried to bolster my education by securing a ground level position in engineering. This proved more devastating than helpful. The worst of many positions was with a munitions factory managed by Firestone. I sent in my typewritten resume and received an application, which I also typed. Two interviews later, I had the job. The first days were basically indoctrination. During the second week I started as a Junior Time Study Engineer. Unbeknownst to me, while observing and recording operators’ methods and the time spent doing them, I was also being watched. My writing methods were not what an employer wanted to see. The upshot was getting fired–no reason or cause was given. I would later be terminated from other jobs and given ridiculous explanations for it, but I knew the real reason.

When applying for work, I would get as far as the personnel office only to be confronted with filling out the application by hand. To avoid this giveaway, I would make every excuse imaginable to get to type the application at home: I didn’t know my mother’s maiden name, wasn’t sure of some dates, needed to ask people if I could use them as references or couldn’t remember when my parents got their citizenship papers.

In the meantime, things in general at Northeastern were going OK. When I was not doing well in one of my classes, I would put my pride aside and discuss the problem with the professor. Ten percent of the time, such a discussion was a lost cause–but 90 percent of the time the professor and I came to some conclusion that satisfied both of us. All in all, Northeastern was a wonderful experience and gave me a lot of satisfaction. I graduated in 1965 with a B.S. in Industrial Engineering.

The Monday after graduation I started a new IE job in Bridgeport, CT. This time I played my cards right. After receiving the offer, I made an appointment to see my future manager. I leveled with him about my problem. When I got through with my spiel he said: “I can see several ways to get around this situation. Do you want the job?”

Unfortunately, this position never met my expectations as the company was on its way out. I had always wanted to go to California and my current position–or lack thereof–provided the impetus to search for work out west. Soon I was on my way to California with an IE position in hand.

This was the start of my career in the computer field. Being in California was a wonderful experience for my family, but the field had its ups and downs. I found myself out of work almost seasonally. Whenever I got laid off, I wondered if it was because work was slow or my hand shook. I felt guilty about my family’s insecurity. No matter what I tried I always ended up in the computer field. At one point, I considered changing careers, but with a daughter in college that seemed ridiculous.

We also checked out several doctors to get the latest on my tremor. The usual problems seemed to be getting worse with age. I had difficulty eating and drinking–and the tremor got to be more of a hindrance at work.

The last ten years of my career as a Senior Manufacturing Engineer continued to have ups and downs. A lot of my work, both at my desk and in the field, was done on a laptop computer I’d bought for myself. This was a godsend as I could type at my own speed and the results were legible. However, my company was downsizing and I had to deal with my peers’ suspicions about my laptop use and inability to take notes in longhand. There was no doubt in my mind, though, that I was a contributor to company endeavors. That was very important to me.

I still pursued a solution to my problem through everything from psychological tests to neurological evaluations. One neurologist recommended that I try the Mayo Clinic in Scottsdale, AZ. Parkinson’s disease was ruled out. It was, however, the first time that the tag of “essential tremor” (ET) was put on my condition.

Mention was made of an operation, Deep Brain Surgery (DBS), that could relieve my tremor. Before this was attempted, drug trials had to be done. The results were either no relief or side effects I couldn’t take. The drugs administered at Mayo were different than those prescribed by past doctors so I think I covered the gamut.

I was then called for an interview with Dr. Evidente, a neurologist and spokesman for DBS as applied to ET. He informed me that I would be the first candidate for DBS at Mayo Scottsdale. That sounds risky but a whole surgical team from Scottsdale was to spend two weeks at Mayo in Jacksonville, FL where the operation had been done for two years. It didn’t take me long to agree to the procedure.

I was impressed with the professionalism of everyone at Mayo. I won’t describe all the testing, examining and evaluating that was done prior to the operation. But it was during this time that I learned I needed two bypasses and an aortic valve replacement–and this all had to be done before the DBS could be performed.

DBS itself is a two-part operation. First, a probe is implanted in the brain to receive electronic impulses from a pulse generator (which resembles a pacemaker) that is implanted in the chest during stage two. Prior to my case, both steps of this DBS were done at the same time. However, one of Medicare’s conditions of coverage was that the probe would have to be done in one operation and the pulse generator in a second. I had the operations–on the left side of my brain for the tremor in my right hand–one week apart in April 2002. The same procedures were performed for my left hand, where a minor tremor had also grown in intensity, in November 2002.

As I am right-handed and that was where the more significant tremor was, the first set of operations was the more momentous of the two. The week I had to wait between getting the probe and getting the pulse generator seemed an eternity. I wanted so badly just to write my name. My writing had gotten so bad that my wife had to do it all for me. I couldn’t even endorse a check. But once that generator was in, you could hardly believe that I’d had ET. For the first 70 years of my life, I couldn’t write my name as I do now. In fact, I have had to learn how to write again. I experiment with different ways to hold pens and write on different materials. I now have such control that I can write with a ballpoint pen on toilet paper. Try it sometime.

Compared to presurgery, typing is a dream. My typing has never been as good or as fast, and is continually improving. With writing, printing and typing, I’m learning how to change from old habits to new. I used to compensate for my right hand by typing certain keys with my left. Now I type using the two-handed position that most use. Furthermore, my touch on the keys is very gentle and direct–before I would tense up, compounding the errors.

Another major difficulty was tuning the car radio. I could turn it on without much difficulty but the exact tuning was not good. And speaking of the car, control was a problem. Prior to the DBS, when driving at speeds over 55 mph or on curving roads, my right hand would shake to the point where I’d be scared. Of late, Nancy, has confessed that she, too, was concerned when this would happen.

Shaving had also been a problem for me, but isn’t any more. And eating difficulties were many. For example, when cutting meat the smaller piece would often go flying. Forget about manipulating a meatball sandwich, handling a plate at a church banquet, eating peas with a fork and so on. Spilling liquids was another trademark of mine–sometimes you could find me by the coffee drips on the floor. I don’t think I ever took communion where I handled the wine myself. It might not sound like a big deal, but I’ve always wanted to be like others and it bothered me. Not long ago I communed for the first time on my own.

The problems I just detailed are behind me now. I feel like the luckiest guy in the world. Not only did the DBS relieve my tremor, but the presurgery examinations alerted me to a heart problem that I got corrected before it was too late. Talk about another godsend.

For that reason alone, I would not wish for a life free of ET. Beyond that, if I hadn’t lived with ET, I wouldn’t know the feeling of accomplishment I now have. If success is a wife and family, a college education, professional work with an income above average, your own home and few niceties, then I think I have been a success.

For over seventy years, whenever someone told me something couldn’t be done, that lit a fire under me. I have never been short of goals as there was always someone putting an obstacle in front of me. How can I ever say, “Just think how wonderful life would have been without a tremor?”

But I do make this charge to parents, teachers, caregivers, and others: There is no cure for ET, but there are treatments, medicines and surgery that can relieve the anguish that comes along with a maturing essential tremor. The time to catch its symptoms is early in childhood or as soon as possible for adults. Get the condition diagnosed by a neurologist, get the patient established with the medical profession and keep a watchful eye for an increase in tremor activity over time. ET is not the end of the line by any stretch.

Ken Anderson is retired. With his wife of 48 years, he spends winters in Sun City West, AZ and summers in New Hampshire. He keeps busy with his hands doing restorations in NH and hobbies at his workshop in AZ. Ken adds: “I would be remiss if I didn’t give a heartfelt ‘thank you’ to the Deep Brain Surgery Team at Mayo. Their knowledge, thorough investigation, care and professionalism gave me a new outlook on life and may give someone else the same opportunity. In particular, it was Dr. Virgilio Evidente, M.D. (Neurology) and his assistant, Brenda Grucza, R.N., who initially encouraged me to have the DBS that relieved me of the negative effects of ET.”

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