Stop & Go

A Brief Journey Through Parkinson's Disease

By Thomas F. Moore

PARKINSONS DISEASE: My Journey

It was 1986 when I had my first Parkinsonian symptoms. I was 33 years old, enjoying my life and new job as a manager with the New York City Transit Authority. The new position was challenging; it involved developing a comprehensive system to identify, locate and track the conditions and maintenance schedules of New York's 18,000 bus stops. My social life was demanding as well: dancing, dining and dating several nights a week, summers in the Hamptons and frequent vacation travel. Life was full, to say the least.

The initial symptoms of difficulty in writing and holding a pen were mild and, due to the fact they occurred toward the end of the workday, I easily attributed them to fatigue, or perhaps a pinched nerve. I brushed them off, but began dieting and exercising, and made an effort to get more rest. When the symptoms persisted, I realized I was not going to cure them on my own. I scheduled an appointment with my internist who, after examining me, referred my to a neurologist. Needless to say, my anxiety level went through the roof as my imagination conjured up possible causes for my symptoms.

My first visit with Jay Coblentz, MD, did much to calm my anxiety. (As an aside, Dr. Coblentz is still my primary neurologist today, fifteen years later-- a testimony to his excellent skills and caring nature.) Although he could not tell me the cause of my symptoms upon first examination, Dr. Coblentz's honest and straightforward manner put me at ease. He explained that the method for arriving at a diagnosis would involve a process of elimination; he mapped out the tests I would undergo, and the purpose of each. It would be four long months of tedious detective work before I would learn the source of the problem.

It was with a mixture of relief and dread that I received the diagnosis: Parkinson's Disease (PD). I was greatly relieved that I did not have anything that was immediately life threatening; brain tumors and cancer had loomed in my mind for almost half a year. However, I knew very little about PD. I had always been under the impression that it was the "shaking disease," and that it only impacted older people. Questions flooded my mind-What causes it? Is there a cure? What is the prognosis? I did not like any of the answers-- We don't know what causes it. There is no known cure. It is a progressive, degenerative disease. My relief quickly turned to trepidation as I began my long journey with PD.

During the weeks and months following the diagnosis I was plunged into the gambit of emotions. I became angry and depressed. I was embarrassed about my condition and tried to deny it to family, friends and myself. Looking back I realize that these feeling were all very normal responses, but at the time I felt like I was drowning. Fortunately, my family was very supportive. I eventually reached the conclusion that I was stuck with PD and there was nothing I could do about it. I could sit around and bemoan my situation or I could get on with living. I decided that living was better than crying, so I tried to go on about my life. One of the first things I decided was that I was not going to let PD rule my life. I would accommodate it but I would not change my life. The other thing I decided was that no matter how I felt, I was not going to inflict this condition on others. I would soon see that as the years dragged on, it would become harder and harder to keep these intensions.

One of the best words to describe PD is "insidious." The symptoms creep up on you slowly so that it is only over time that you realize their impact on daily life. I had been able to type 80 words a minute but a few years into the disease; I was lucky to be able to hit the keyboard! I had also been able to get up in the morning and be showered, shaved, dressed and out the door in thirty minutes. By 1990, I had to leave myself an hour and a half to get out at the same time.

Ironically, I also had to deal with the side effects of drugs I was taking to combat the PD symptoms, some of which were as bad as the symptoms themselves! Medications like Sinemet are invaluable tools for freeing the person from the rigidity of the disease. However, inconsistent delivery of the medicine delivery to the brain starts to occur the longer a person has been taking the drug. As a result, dyskenisia can occur, which is the involuntary movement of muscles causing unexpected jerking motions. It was around 1991 that I had my first experience with dyskenisia while I was on a date with a beautiful woman who I was attempting to impress with my suave, sophisticated manner. We were in a romantic Italian restaurant, getting ready to toast one another with a glass of Chianti when my hand that was holding the glass began to flail around; the wine glass was emptied all over the table. The episode lasted only a moment, but the impression it made on my date was obvious from the look on her face: she was out on the town with one of the Marx brothers! When she asked me what happened, I tried to play down my own shock by replying, she had that effect on me…. I don't think she quite bought it, but I have learned to use humor to deal with many situations.

By 1993 the dyskinetic episodes were so bad and so frequent that they were a part of my daily life. The uncontrollable gyrations would cause me to wear holes through shirts, suits, and even a leather jacket! Many people would question why I would continue to take a medicine that had such a negative impact on my life. However, the alternative would be the rigidity and lack of movement caused by PD. Any movement, however jerky, would be preferable to no movement.

During the next two years the dyskenisia got progressively worse. Finally, Dr. Coblentz suggested I consider having a pallidotomy, a surgery in which lasers are used to scar the spot in the brain that is malfunctioning. I had never considered surgery before, so I began doing research on the procedure, which included getting in touch with the New York University (NYU) facility where it would be performed. From what I learned, the results of the procedure could be dramatic although limited in duration. I decided early in 1996 that I would opt for this surgery. The screening and pre-surgery testing was extensive and very impressive. The purpose of the testing was two-fold: first to determine if I would be a good candidate, and then to identify the exact location in the brain where the lesion would be placed. Individual tests included neurological examinations, an MRI, a neuropsychological evaluation and a PET scan.

I went into the hospital in May of 1996 to have the pallidotomy. I had been briefed on what to expect, but unless you actually experience it, words are insufficient. The operating team got started around 7:00 a.m.; they prepped me by deadening the feeling in my scalp with an injection of lydecane. After about twenty minutes they wheeled me into the operating room. The first step was to attach a "halo," which is a metal frame that served to keep my head immobile during the surgery. This was accomplished by drilling tiny holes into my skull and then hammering small pins to hold the frame in place. Next, they had to drill two burrholes into my skull to allow the devices that would identify the proper target area to enter my brain. Believe it or not, though these procedures were uncomfortable, they were painless. Another key point was that I needed to be awake for the entire procedure so that doctors could determine the proper location to be scarred. By listening to the neurons firing in my conscious brain, the doctors could determine how close they were to the target area.

After lying immobile on the operating table for several hours, I began to experience little aches and pains from the stiffness of my muscles. The attending staff was wonderful, placing pillows under my legs and massaging those aches and pains. After a time I began to get a sharp pain in the small of my back that no amount of rubbing could relieve-to me, this was the most difficult part of the surgery.

After what seemed like an eternity (it was really only about six hours) the doctors thought they were at the correct spot. To confirm this they stimulated the suspected target area, and my right hand and arm started moving without any conscious effort from me. This confirmed that they were in the correct area. After a little more testing, they started applying lesions-the result was immediate and dramatic!! I told the surgeon to "put the cork back in my head." I felt great!! For the first time in years I had no dyskenisia!

I knew that the benefits of this surgery would be temporary but, regardless, I was grateful for every dyskenisia-free day that I received from this surgical procedure. It is seldom that a person gets a second chance at life, but this is how I perceived the benefits of the Pallidotomy. I returned to work and enjoyed three years of "normal" living. However, by 1999 the insidious nature of PD started to rear its ugly head again. I was presented with the prospect of undergoing a new and somewhat experimental procedure, Deep Brain Stimulus (DBS).

The decision to go for the DBS procedure was not an easy one, especially in light of the fact that I still remembered the pallidotomy experience vividly. There were many questions I needed to answer for myself before I even applied for the procedure.

The primary question was, "had my condition deteriorated to the point that I needed this surgery?" The answer was,"yes." I could not sleep because I couldn't roll over, and sometimes the tremors would keep me awake. It took me nearly two hours to get out of bed in the morning to get ready for work, regardless of how I slept. Simple things like putting on socks or buttoning a shirt were now incredibly difficult projects.

The next question was, "how was my quality of life?" In addition to taking nearly two hours to dress in the morning, I could not clean my apartment or do a load of laundry, shaving and bathing could be an excursion in terror, and eating was not fun. It seemed that my independent life style would soon be coming to an end. To answer the question, my quality of life sucked!

It may seem that the answers to these question were arrived at simply and logically, but they were not. PD, as I stated before, is a very insidious disease and its manifestations are not always easily measured. I knew that my physical condition had worsened, but I really could not determine by how much. Part of my dealing with PD was to accommodate it rather than to surrender to it. Thus I had trouble admitting to myself that I had deteriorated as far as I had. Additionally, I was suffering through my first serious bout of depression. I have come to learn that it is at times of decisions like this that the support of family and friends is critical, as well as that of a good doctor. After about three months of soul searching and researching the benefits of DBS, I decided to start researching what the procedure entailed.

Based on my past experience, I determined that NYU would be the best place to have the procedure. I had also been very impressed with the support network they had to offer. I attended an open meeting for anyone considering DBS; the meeting outlined the procedures, introduced the doctors and staff who were involved with DBS, and explained the follow-up care. Nothing was "sugar-coated." The presentation make clear how grueling the surgery is, and that the benefits might not be obvious until six weeks after the procedure-this would be a far cry from the immediate results of the pallidotomy. Additionally, they advised us of the risks. Also, not everyone was eligible for this procedure and a series of tests would have to be taken to ensure that the patient was a suitable candidate. This was reassuring to me, because it indicated that they were serious about getting positive results. Finally, and perhaps most importantly, was that some of the patients who had had the procedure recounted their experiences. These patients spoke both in a formal setting and in a relaxed, informal setting during the break. Their first hand accounts served to allay some of my fears.

There was no underplaying how complicated and delicate the surgery would be. Dr. Kelly, the surgeon who would be responsible, likened it to parachuting out of a plane at 10,000 feet and trying to land in Yankee Stadium, but not just anywhere in the ballpark, but to the left side of the rubber at the pitcher's mound!

My primary fear was lying perfectly still on the operating table for upward of six hours. I felt I could deal with the application of the stereo tactic frame, the drilling and everything else associated with surgery, but could I lie there again for that length of time? It may seem like a trivial thing to someone who has never done it, but imagine flying to California in the middle seat between two rather large people with the lavatory broken and you will have some idea of what it's like!

All things considered and despite my fear, I decided to go for it. Anne O'Sullivan, the administrator, started things moving. It is important to note here that Anne O'Sullivan is another reason I decided to go for the DBS at NYU. Not only is she the administrator, she is a wonderful human being who is truly concerned for her patients. She makes her patients convenience and concerns her priority, and is very aware of their need to be reassured. When Anne became aware that I was not completely convinced that I should undergo DBS, she listened to my concerns, answered my questions honestly and directly, and put me in touch with other patients who had undergone the procedure.

The first person that had to examine me was Dr. Beric, the person who would be responsible for guiding the surgeon to the proper part of the of the subthalmic nucleus where the electrode would be placed. He and Dr. Kelly would review all the tests to confirm that I would be a suitable candidate. They would then map out the surgery itself.

Next was the neuropsychological exam; this was to rule out any dementia. It seems patients whose PD is complicated with dementia do not tolerate the surgery well, nor do they benefit from it. With this test successfully completed, I moved onto the test I least liked, the PET scan. The PET scan is not invasive or painful, but it does require that you be off your medication for at least twelve (12) hours prior to it. For the PD patient, being off medication for such an extensive amount of time is a serious ordeal. The PET scan is a crucial part of the entire testing procedure because it is the best diagnostic tool for confirming if you will receive any benefit from DBS. The final test was the MRI, which is used by the surgeon to plot the course to the subthalmic nucleus.

After having completed all these tests and being approved as a good candidate, it was time for me to make my final decision. I waffled at first and kept putting off the decision. There was no one incident that galvanized me into going for the procedure, I just finally decided the time was now. I called Anne up and scheduled the operation for May 4, 2000.

The week before entering NYU, I tried to keep myself as busy as possible so I wouldn't have time to think about the surgery. One thing I had to do was have my head shaved. (I did not think that my health insurance would cover a haircut, plus I did not want my barber to be upset if someone else had cut my hair!) I entered the hospital on Tuesday, May 2nd, at 6:30 a.m. From the moment I went in, things were happening. The admitting nurse checked me in, told me to get into a gown and rolled me into the operating room. It was at this point that things got a little hazy. I was fitted for the "halo" (stereo tactic frame) and also had a ventriculgram performed. The purpose of the last procedure was to serve as Dr Kelly's final confirming roadmap before the main show on Thursday. Tuesday is a blur because of the whir of activity and the fact that I had been under General Anesthesia for these procedures. When I finally came out of the anesthesia, I had a tremendous craving for chocolate. My sister was there and had brought me the best chocolate shake I had ever had. I sipped it slowly, savoring its cool, refreshing taste. When the resident came by to take me for another MRI I refused to give up my drink. I think I may have tried to suck the wax off the cup! When I was returned to the neurological care unit after the first day's events, I was surprised to drift off to a good night's sleep in light of the momentous surgery that lie ahead.

Wednesday was a day to hurry up and wait. I was in the neurological care unit of the hospital counting down the minutes. My family and friends came in to see me, as did Dr Kelly. I was anxious to get on with it. The day seemed to drag on and somehow I managed to get to sleep that night.

At 6:00 AM, Thursday morning, the nurse woke me up and the orderly was there for my ride to the operating room. The ride itself was uneventful and when I arrived they were still preparing the operating room, so I was left out in the hall. I remember how cold it was in the hall. A nurse came out to check on me and she gave me a blanket. A few minutes later the anesthesiologist came out to check on me and to give me a special lollipop. The lollipop was meant to relax me, which it did. At about 6:30 they wheeled me into the OR and started hooking me up. (I felt like a car being hooked up to the diagnostic machine!) It was reassuring to see Dr. Kelly and Dr. Beric, even if they were in their medical garb, complete with surgical masks.

Prior to the operation I had been asked if I would object to a film crew recording the procedure-I told them I had no problem with this. I mention this because during the procedure I heard a crash and speculated that the cinematographer had passed out!

The surgical staff was excellent; they made every attempt to reassure me, as well as to make me comfortable. The special lollipop that I had been given seemed to be doing its job. I remember everything that went on with surgery from the attachment of the frame (halo), to the drilling, but it all seemed to be in compressed time. It was not until the surgery was well underway that I started to experience any type of discomfort. Two things that I remember vividly were my back starting to ache and my hyperventilating.

As with the pallidotomy, I had to lie on the table as still as possible and, just as had happened with the previous surgery, things got very uncomfortable. Two months prior to the DBS I had to have a herniated disk repaired in my back. Now, due to length of time on the table and the stress, it started to sing to me. I advised Dr Kelly who asked me to hang on. The surgical staff attempted to make me more comfortable as Dr Kelly continued on.

There were a number of things that were different with the DBS procedure from the pallidotomy, but the one big difference was that my face was totally covered so I could not see what was happening around me. As I previously stated, while the lollipop was working the time was compressed, but now that I was back in "real-time" not only was there pain from being kept immobile, but my anxiety level also started to climb; I could hear the activity around me, but could not see it. Before I knew it I was starting to breath rapidly and a sense of panic was creeping in. I knew there was nothing to be panicking about and I tried to think pleasant thoughts, but the sense of panic was always around the periphery of my conscience. Soon this sense of panic overwhelmed me and I started to hyperventilate. The staff responded by getting me to relax. They could not give me another lollipop because they needed me awake as they were reaching the key point in the surgery where they wanted to confirm that they were near the sub-thalamus. Knowing that the end was in sight seemed to ease the anxiety.

After Drs. Kelly and Beric had confirmed the area, the next step was to secure the electrodes in place and create a pathway for the leads from the pulse generators to the electrodes. Dr. Kelly started, lightly, hammering out a pathway over the top of my skull to where the electrodes would enter the front of my cranium. I mention this not because it was physically uncomfortable, but to convey the various facets of this procedure. Fortunately, the light tapping on my skull disappeared into a blissful dream as the general anesthesia took effect-- this was the final step and my participation was not required. It was here that they inserted the pulse generators into either side of my chest. These devices would actually supply the power to the electrodes.

My first clear memory after the operation was of waking up in the recovery ward and seeing my sister and father standing around my bed. I asked her if she had brought me another chocolate shake. After a few hours in recovery, I was transferred back to the Neurological ICU. Due to the grueling nature of the surgery and anesthesia, I slept soundly that night.

The next morning I awoke, hungry as a bear. This was a sure sign to me that I was on the road to recovery. I received phone calls from family and friends-- I was pleased to tell them that I was doing well. One of the calls I received was from my mother. In the course of conversation I told her I was starving and that I had a craving for a tuna fish sandwich. A few hours later my mother arrived with my other sister and the best tuna fish sandwich I have ever tasted. As if that were not enough, two good friends who knew how much I liked pizza but had not been able to enjoy due to previous interference with medication showed up a large pie. I went from starving to stuffed! In addition to the good care I received from family and friends, I would like to note that the nursing staff at NYU was and still is excellent. During my entire stay they were attentive, friendly, considerate and most importantly, professional. This is an intangible whose value cannot be calculated until you are a patient.

As I had indicated, I was doing well physically. My Parkinsonian symptoms were hardly noticeable, even though the DBS devices had not been turned on yet. It was exciting to feel so good without any interventions. However, Anne Sullivan and Dr. Kelly had warned me about this stage: the trauma that the procedure inflicts on the brain would inhibit PD symptoms temporarily. In addition, the DBS devices could not be turned on until the brain trauma had subsided, usually within a week's time. During that week I would need to resume my medication until the DBS could be activated. They also warned that I would deal with a period of depression as the Parkinson's symptoms returned. I thought I was ready for what lie ahead.

I looked like I had been through a war. I had the skull bandage that hid not only my shorn head, but also the various holes and incisions that had to be made for the frame and electrodes. Also, there were two large bandages on my chest covering the incisions that were made for the pulse generators. No was more surprised than me that I was not in any real pain. My only surprise was how weak I felt. The nurses got me out of bed and walked with me, just in case, as I stumbled around. Despite my appearance, the weakness and the excellent care, I was anxious to leave the hospital. Needless to say, when Doctor Kelly authorized my release for Saturday morning I was thrilled.

Leaving the hospital did not mean my recovery was complete; in fact, it was only beginning. I was physically weak, I still had PD, and my devices had not yet been turned on. Additionally, I had been warned about the depression that might come. For the first time in over twenty years I had to return my parents' home so that someone could look after me. Fortunately, my parents were willing and able to take me in and assist me. I would have to stay with them until my strength returned, and until I felt comfortable about resuming my independent "bachelor" lifestyle.

When I finally got to my parents home I was elated to be out of the hospital. The following day was like a holiday with family and friends stopping by to see me, and I was still feeling pretty good. When I went to bed that night the dreaded tremors started to return. The next few days were very difficult. The Parkinsonian symptoms returned along with my returning to the full dosage of medications. I started wondering just "why the hell I put myself through of all this?"

Depression is a horrible thing, it is not just crying. Depression is anger, lethargy, anxiety, sadness, self-pity, and a whole host of other emotions. Even though I knew it might come and I had experienced it before, it is a very difficult condition to deal with. Keeping active is my personal way of dealing with depression. By keeping active I am not referring to running a marathon but rather getting up in the morning, showering, shaving, making the bed and, if the day is nice (and fortunately they were), getting out of the house. It did not eliminate the depression, but it helped me to deal with it. The fact that I was living with my parents helped, and also the fact that I knew in a couple of days the devices would be turned on.

When the day finally arrived I was champing at the bit. My father had to escort me down to the hospital because I was still not 100%. There was a mixture of hope and nervous expectation plus curiosity. Doctors Beric and Stereo are the primary people involved with this aspect of the procedure. They are a mix of medical doctors, computer technicians, and detectives but with all of that they are sensitive to the patient and have sense of humor. They explained to me that they would start me off on a low electrical setting and, each week, they would up the settings. I wish I could say that the minute they turned the devices on I was cured, but I was not. Unless you have PD it is difficult to explain how little things can make a positive big difference in your life. The first time the devices were turned on I noticed that the tremors did not seem as bad and the rigidity (which is the thing I hate most about PD) did not seem to be as pronounced. This was the first in a number of adjustments, which I call "Tune-Ups".

These "Tune-ups" continued once a week and after each adjustment there was improvement. It was not until the third or fourth week that I started to realize the full benefit of the procedure. I had reduced my Sinemet intake by half, while eliminating two other medications completely. My movements became easier, my stone face began to disappear and the tremors ceased. I cannot remember exactly when it occurred, but I started sleeping through the whole night. The subtitles of my recovery were slow but constant. Three weeks after the operation I felt strong enough to resume living on my own and to let my parents get on with their lives.

Living on my own again turned out to be quite an adventure. Domestic chores that I had hated doing because they were physically difficult were no longer as hard. Things such as dressing, shaving, etc., did not require as much time or effort. I am not exaggerating when I say, "I was rediscovering life."

Today I am back at work and living life to its fullest. I wake up every day and say "Thank You" to the Lord for the procedure and another day. I still have PD and I still do not like it, but DBS has permitted me to resume a relatively normal, independent lifestyle.

I do not know what lies ahead with regards to PD. The research gives me hope but DBS has permitted to make plans for a productive future. What I have referred to as Tune-ups are what I think are an overlooked aspect of the DBS procedure. I now go for my Tune-ups basically on "as needed basis" and they are quick and painless. It takes on average about one hour and involves adjusting the setting of the pulse generators (batteries). The batteries are supposed to last five years and can be replaced. These adjustments permit the doctors to address the insidious nature of PD. Also, when the cure is discovered the devices can be removed.

In closing all I can say is "Stop & Go but don't give up".