William A. Parrette's Tremor Disorder -- Part 5
Early 1998

Early 1998 I can't remember the exact date, but I do remember the phone call from my wife. She had been reading a community newspaper during her lunch break at work. In the paper there was an advertisement for something called a Parkinson's screening and they were offering a free evaluation to all who stopped by a local mall. At this yearly event there were going to be some movement-disorder workers, some nurses, and a few neurologists. Their whole objective was to bring awareness to the disease and to screen the participants to see if their symptoms indicated they had PD. As I showed up for the screening, I was quite amazed at the number of participants that had shown up. There were three areas: a registration table that also contained a number of useful booklets and pamphlets; an area to test for movement disorders; and a series of curtained-off examining areas where the neurologists could perform their exam. And, there was a lengthy queue of people for each of the three areas. I expected to spend, perhaps, 45 minutes to an hour, but ended up spending more than three hours to get all the way through the system.

The registration was easy. It was similar to many of the registration forms that Doctors use for new patients -- just less detailed. They also had a questionnaire that asked about a number of symptoms and other things that would be used by the doctor during the examination.

The folks who tested for the movement disorders were a different story. It seemed to be a group of volunteers making the measurements and performing the tests with only a few practitioners/managers who floated around the area to make sure that everything proceeded well. These volunteers sat you down, had you tighten, stretch and relax different extremities while they made a variety of measurements. Then they had the participant stand up and balance themselves in a number of different situations -- standing on one or both legs, on the floor and on a pad; while being pushed gently; and such. After reading the results of their testing, it seems that they believed that I had a predisposition to falling frequently.

One of the nurses took my blood pressure -- it was a little high (and it always is) and then suggested that I make an appointment with my G.P. Then came the real wait. Even though there were four examining rooms, there were only two doctors and they seemed to be seeing the participants together -- I guess just to have a second opinion available. And this wait was the longest -- it must have been close to an hour of just sitting and waiting for the doctor.

Finally, after the wait, one of the neurologists came in to start my examination. As I expected, my tremors were fairly obvious and his first words were something to the effect of "Yes, you have Parkinson's Disease." He looked over the test and my answers from the registration packet and essentially ignored them. Then he proceeded to give me many of the (what are now, to me, fairly normal) agility, dexterity, and writing/drawing tests. I am really not too sure what caught his attention. But, he started making notes, scanned the forms that I filled out, and basically waited for the other doctor to come in.

The other doctor was more "down to business." He consulted with the first doctor, performed many of the same tests, and had me write some words in script, draw some spirals, and draw some lines and other geometric objects. I don't know what he was thinking, but, the last thing he did was to hold my arms and hands out and away from my sides. Then, he took a tuning fork out, struck it, and started it vibrating, and then held its base in contact with the top of my head. First the left side and then the right. And both of us observed that the tremors in my hand and arm subsided a bit on the opposite side of the body.

I don't know what the test proved, the doctor wouldn't explain his suspicions, but he did say that he thought it wasn't Parkinson's Disease. He then suggested that I get an appointment with another neurologist as soon as possible. The nice guy that I am, I realized he was very busy with the crowd waiting outside. And he seemed pretty grave in his diagnosis -- sort of like he didn't want to discuss it with me right then and there. So, I thanked them and headed toward the exit.

Back at the opposite side of the registration table, the volunteers had a packet waiting for me. In it were the movement disorders test results, the test and questions that I had filled out upon arrival, and a list of Doctors in the area that specialized in Parkinson's Disease.

At this point I was still self-employed with no insurance. So, I hung on to the list for future reference. Interestingly enough, three of the specialists were employed by the same group practice that my third neurologist worked at (Mr. "four-strikes-and-you're-out"). Obviously, I was in no hurry to go back to them. That left one name on the list and I found myself hoping that this doctor would be able to do something about my condition or at least give me a firm diagnosis.

In March, I accepted a full-time position with a new employer. Luckily, this employer wanted me to do the same job that I had been so successful and happy at for the past thirteen years. And, they had insurance. In checking with the insurance provider, I found that if I hadn't made any medical claims or seen a doctor for a particular condition within the last six months, then they didn't consider the ailment as a preexisting condition. Now, between the weeks "on the road" traveling for the business, I might be able to schedule an appointment with a new neurologist. Six months may seem like a long time but I was bound to wait it out -- things were starting to get worse and I needed some help.

May/June, 1998

By this time, other symptoms had started to appear while other symptoms changed a bit:

• Resting Tremor -- I have gone through a range of styles of tremors. What started out as a general shaking of the hands eventually changed into the classic "pill rolling" tremor. Then, it changed to a clasping/grasping tremor. Either one was controllable at rest. And, the classic nonswinging arm stopped for a while and then changed into a raised-arm/clenching fist position on both sides.
• Fatigue -- In searching back through my memories of the last four or five years, I seem to recall that towards the end of my previous full-time job (around 1995) I was exceedingly fatigued many times. So much so that simple tasks such as lifting my luggage off of the conveyer at the airport became a real chore and would literally wear me out.
• Difficulty Walking
  Difficulty Getting Into/Out Of Bed
  Difficulty Getting Into/Out Of Chairs
  Difficulty Turning In Bed -- Well, this symptom finally hit. Walking became harder and it would take quite a bit of effort to do simple things like walking the dog. And, getting into and out of cars and chairs became a real effort as well. I would have to expend a great deal of effort using my arms to pull me out and up into a standing position. However, I did not experience any difficulties getting into or out of bed or turning in bed during the night.
• Slowness Of Movement -- At the same time I noticed that I had a lot of difficulty making repetitive hand, arm, foot, and leg movements. Taking a shower or brushing my teeth started becoming events that I would not look forward to.

Some of the other symptoms have changed a bit as well. I am no longer hyper-aware of my eye socket and the veil has disappeared. Related to this, I don't have the blurred vision as bad or as often. And, in the morning, the tremors "establish" themselves in as little as five or ten minutes.

At the same time, my perceptions and knowledge of the drug Sinemet had changed as well.

• In all of my reading on Parkinson's, Sinemet is the drug of choice to reduce the visible symptoms. But, in my application of the drug, I have still never noticed any reduction in symptoms.
• I finally determined that all of the doctors had prescribed Sinemet for the same purpose. They were all just trying to determine if it would reduce any symptoms. If symptoms were reduced, then they could more accurately -- if the drug had the intended effect -- call my condition Parkinson's Disease.
• I believe that I now understand that Sinemet doesn't have a limited working lifetime. Instead, as the brain cells continue to deteriorate, there are less cells that can transform the levodopa in Sinemet into the dopamine that the brain needs to control the muscle movement. So, the more the brain deteriorates, there are fewer cells to do the conversion, and the drug appears to have less effect. For some people, this may be as little as four or five years while still others may take longer.

Interestingly, in this same time frame, I found out that my G.P. was a certified acupuncture practitioner. I knew it wouldn't cure me but I had read that it might relieve some of the symptoms. So, I scheduled several sessions. Unfortunately, I didn't notice a big difference. I haven't decided if I am going to pursue this avenue any further. It really isn't that I'm afraid of the needles, it's just that I believe that for this procedure to be effective, I would need to schedule weekly visits. And, with my work and travel schedule, it is difficult to make those kinds of plans very far in advance.

William A. Parrette's Tremor Story

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