By Steven R. Maher
It was Monday November 14, 2011. Outside it was a beautiful New England autumn day, the sun was shining, the leaves were sparkling, the weather was warm, and the last of the snow from the dreaded early winter, power black-out causing storm had vanished.
I was in the well-lit waiting room at the Worcester Medical Center waiting for my neurologist to turn on my neuro-transmitter. Twelve days earlier I had deep brain stimulation surgery (DBS), during which three holes were drilled into my thick Irish skull. Into two of these holes were placed probes that would stimulate brain activity deadened by Parkinson’s disease. Two days later a transmitter was implanted in my chest to send electronic signals to the probes. Today the transmitter would be turned on and we would see if the operation was a success.
The appointment was at 12:00 PM. High noon, I thought. As I sat, my mind drifted back to that dark day, April 21, 2008, when I was first diagnosed with Parkinson’s disease.
Soreness in arms
In 2008 I was 52 years old. Three years earlier I had gone on a diet and lost 75 pounds. This was accomplished by two means: a Spartan diet and a strict exercise regimen. For breakfast I had a small bowl of tasteless whole grain cereal watered by low carb milk, with low carb orange juice to drink. Then I fasted for six hours, allowing myself only water between meals. For lunch I had a small piece of chicken with a large salad and water to drink, fasted six hours more, and for dinner had a large serving of fish with water.
I exercised two hours of day: an hour on a stationary bike, a period of rest, and then another hour. Other days I would walk for hours, on long circular routes around Auburn, ten to twelve miles at a stretch. Starved of carbs and fats, the calories being burned off by the exercise, I began to drop ten pounds a month.
In the fall of 2005 I accelerated the weight loss by use of free weights. While sitting on the exercise bike, I would do arm curls with five pound weights. The last 20 pounds melted away and I hit my goal of going from 245 pounds to 170 pounds.
I was so grateful to God for this miracle that I became a daily communicant. Most people turn to their faith when something bad happens. I turned to it after something good had happened.
“You have Parkinson’s disease”
One day in April 2008 my upper arms began to ache after one of these workouts, as did my hands and fingers. Tremors appeared in my right hand and I had difficulty signing my name. Slightly annoyed, I made an appointment with my primary care physician at the Auburn Fallon, Dr. Daniel Guilbert, who referred me to a neurologist, Dr. Thomas Mullins.
Mullins is the traditional jovial Irishman, a great conversationalist, always with a story to tell. He introduced me to another doctor, a student, and they examined me. Mullins at one point asked me to slowly draw concentric circles on a piece of paper. As I did both he and the student doctor made slight moans. They went into another room, consulted, and Mullins came back and uttered the most devastating words I have ever heard.
“You have Parkinson’s disease.”
“Parkinson’s disease is a progressive disorder of the nervous system that affects movement,” says the Mayo Clinic web site. “It develops gradually, often starting with a barely noticeable tremor in just one hand. But while tremor may be the most well-known sign of Parkinson’s disease, the disorder also commonly causes a slowing or freezing of movement. Friends and family may notice that your face shows little or no expression and your arms don’t swing when you walk. Speech often becomes soft and mumbling. Parkinson’s symptoms tend to worsen as the disease progresses.”
“It [Parkinson’s] results from the death of dopmaine-generating cells in the substantia nigra, a region of the midbrain; the cause of cell-death is unknown,” reports Wikipedia. “.. Later, cognitive and behavioural problems may arise, with dementia commonly occurring in the advanced stages of the disease. Other symptoms include sensory, sleep and emotional problems. PD is more common in the elderly with most cases occurring after the age of 50.”
The gold standard
Dr. Mullins first put me on Sinemet (carbidopa-levodopa).
“This is the gold standard of Parkinson’s medications,” he explained. “I want to test it out on you, see if it works, and then we’ll look at other alternatives.” A week later, when I reported back that the Sinemet had greatly reduced the symptoms, the diagnosis was confirmed.
I did not do lapse into self pity. There were no “Why me?” questions, nor did I see this as some sort of divine retribution for how I had lived my life up to this point. I resolved to face the matter squarely.
I made the decision early on to tell only close family and friends. I had been on a new job as an accountant at a Fortune 500 company seven months when I was diagnosed. While as a lawyer I knew that Parkinson’s was protected by the Americans with Disabilities Act, I knew I would be in a better position in court – hopefully it would not come to that – with some good job reviews.
So over the next three years I built quite a work record, coming early, staying late, working enormous hours, foregoing vacations. I built up quite a list of accomplishments, had several excellent job reviews, and received some large bonuses. With the bonus money I paid off my car loan two years early, liquidated all my short term debt, and refinanced my mortgage so that the payment was less than $300 a month. I wanted to position myself so that I could survive financially, if necessary, on Social Security disability payments and income from the two apartments I leased out.
One of the few people I did tell about my illness was a priest in my church, Father Ted, whom I wrote about the diagnosis. After the next mass he greeted me in a booming voice, “Steven, you look great!” A woman nearby made a strange chortling sound with her throat, as if she couldn’t understand why the good father was saying this. But I knew.
Dr. Mullins then prescribed another drug, Miraplex. Unknown to me, Miraplex had side effects.
Said one web site: “For example, Mirapex has been shown to cause the following adverse effects in patients using the drug: fainting, hallucinations, weight loss, weakness, twitching, insomnia, stomach upset, and drowsiness. It has also been known to cause hypersexuality, overeating, and even compulsive gambling in rare, but documented, cases.”
I began to experience strange symptoms. Sometimes I left the gas cap on the car hanging outside the gas tank. Eight months after I first took Miraplex, I found myself, without even thinking about it, driving through the parking lot at Auburn High School to watch some joggers. After that, I went online and began to research what Miraplex was and how it affected me.
I went back on Sinemet and slowly, as the months passed by, my situation worsened. My arms and legs ached, my feet hurt and at work I started walking around in stocking feet most of the day. My speech became slurred; co-workers often asked me to stop and repeat what I was saying more slowly.
I lost dexterity in both hands. They trembled when I shaved, both hands holding the razor to keep it steady. I could no longer button a shirt and putting on socks was a struggle. I bought pull over shirts so I didn’t have to button them. It was difficult drying myself off after a shower.
My arms and fingers stiffened to the point where it was difficult to get the car keys out of my pants pocket. One night at a Wal-Mart register, I struggled for almost ten minutes to get the wallet out of my back pants pocket, so I could get the credit card to pay the bill.
Increasingly, when I went to insert my credit card into the slot at a self-service gas station, my fingers would suddenly cramp up, twist into contorted shapes, and become wracked with pain.
At work, I made myself scarce. I skipped company social gatherings so no one would see my quaking hands. Co-workers suspected I had social phobias. I had real difficulty using a mouse attached to the computer, so I bought a wireless mouse from Staples. The first two broke when my hand tremors became so pronounced that I dropped the devices on the floor.
The rigidity worsened so that at the end of the day my shoulders hunched up, and I walked with a noticeable limp. The pain in my feet became such that I gave up walking for exercise. Cycling was no good either; after fifteen minutes I was exhausted and my feet ached for days. I slept fitfully. Too tired to go to church every day, my attendance slipped to weekly and then every other week.
By this time I was taking a daily cocktail of drugs: Sinemet, Ropinirole (a replacement for the Mirapex), and Amantadine, just for the Parkinson’s. Like most Parkinsonians, my physical deterioration had led to depression, so I was put on anti-depressants. I also took buspirone, an anxiety control medication.
The thing that seemed to help most was Lorezepam, a sedative. When my tremors became uncontrollable, two of these would calm me down and allow me to work.
Worst of all, I lost the ability to write. You would have to love writing as much as I do to comprehend what a loss this was to me. Using a keyboard to type was an exercise in agony. I was reduced to using a voice activated system for my InCity Times book reviews. Unfortunately, unlike the ones you see on television, this laptop package did so poorly at interpreting what I said that it took an hour to get out a readable paragraph.
I began preparing for the end. I wrote a will, a health care proxy, made my banking accounts joint accounts with one of my brothers (so he could inherit the money without probate court approval) and prepaid a funeral and burial plan. I did not intend to leave behind any debts for my family to pay. The only thing they would have to buy is my gravestone. They could write on this what they wanted about me; I figured my days as a writer were over.
Things had reached this pass when a new neurologist, Dr. David
Sommers, came upon the scene.
“Steve, have you ever considered DBS, which is deep brain stimulation surgery for your Parkinson’s?” asked the twenty-something Sommers. “You would be the perfect candidate. Your mind still functions at a high level, as is shown by your job. You are in good health otherwise.”
My blessed mother had once told me that she distrusted young doctors “because they were quick to the knife”, i.e., they were quick to recommend surgery. That thought immediately came to mind. I begged off, citing work responsibilities.
But the toll the disease was taking on me was reaching the breaking point. In July 2011 I told Dr. Sommers that I was ready to have the DBS done.
The surgery takes two to three hours. The patient is awake the entire time. I didn’t know if I could do this. I have to take Valium just to sit through a root canal. Perforating my brain while I was wide awake and plugging in electrodes seemed too much.
I filled out the paperwork to get time off from work, and notified the two tenants in my house I would be at the hospital for a week. I was touched and surprised at their reaction to my need for surgery. One co-worker brought in four plastic containers with home made goulash, which I lived on the first four days after the operation. Another brought in a plate of brownies, which were so delicious that myself and a friend polished them off the day we received them.
After the operation, eleven of my co-workers put together a small book of photographs with funny captions, saying they missed me and were praying for me. One tenant called up to say, “Steve, Greg [her fiancé] and I know you’ve kept you’re distance from us because you’re the landlord and we’re the tenants. But while you’re convalescing, anything you need to have done just ask – laundry, cooking your meals, anything. We love you.”
The operation, scheduled to be done by Dr. Emad Eskandar on October 24, 2011, was postponed until November 1. After having my head shaved, I checked into Massachusetts General Hospital on Halloween 2011. I had my own room, a large spacious area with a couch, chair, and panoramic view of the hospital. The food was delicious, absolutely first rate. They gave me a menu for every meal; I could order whatever I wanted. It was like staying at a five star hotel.
The next morning I was taken in a wheelchair to a room where they put me on a stretcher. Several doctors came in and started injecting directly into my head some powerful pain killers. As the needles stuck into my head – I remember there were something like 10 to 15 shots – I wanted to scream with agony. As I write this three weeks later, parts of my skull still feel numb.
Then they literally screwed into my head a large metal cage. They put two other cages on top of this and locked those in as well. I asked them if I could get one of these for home, saying it would be nice to sit around watching TV in. They laughed and said the device cost around $50,000.
They took me to a room where I had a CAT scan. “You have a beautiful looking brain,” said Dr. Eskandar. I was relieved; at my age you have to start worrying about two other silent killers, Alzheimer’s and dementia, that first appear in the brain.
“No Alzheimer’s or dementia?” I asked.
“None,” replied Dr. Eskandar.
As they wheeled me on a stretcher to the operating I asked Dr. Eskandar,
“Where are you from?”
I didn’t what to say to this. I had never met an Egyptian before. So I said the first thing that popped into my mind: “Some of my best friends are Egyptians.” I don’t know why I said this; maybe I was hoping he would take it easy with the scalpel. I’m a lawyer, so people don’t expect me to tell the truth anyway.
They wheeled me to the operating room, a large metal chamber with mirrors, monitors, and fifteen or so people wearing green outfits, rubber gloves, and masks. I regret that I had not thought to invite some of my old political adversaries to this event; Paddy Boyle would have enjoyed watching my brain being diced and sliced.
The anesthesiologist began flooding my body with relaxing chemicals, because I felt neither fear nor anxiety. They covered the cage on my head with plastic, and cut out two holes: one in the front that my eyes could see through, and one in the back for the doctors to work through. I remember thinking that I looked like Hannibal “the Cannibal” Lector in the movie “Silence of the Lambs”, in the scene where he was propped up at the airport and his face was covered with a mask.
Then the surgeon said they were going to drill into my skull in three places and I would hear vibrations, but not feel any pain. At that moment, the anesthesiologist and a woman doctor each took hold of one of my hands with both of their hands. I was very touched emotionally by this.
They began drilling, and the vibrations were so strong that my teeth started to chatter. When the drilling was done they tested out the probes. They would ramp up the frequency and then have me wave my hand around or act like I was screwing in a light bulb, to test which frequency worked best.
At various times during he surgery the doctor would ask me to repeat, “I love tapioca pudding”, identify the President of the United State, or state where I was. At one point he decided to test my knowledge. The following soliloquy took place between doctor and patient:
Doctor: “Who is the President of the United States?”
Patient: “Barack Obama.”
Doctor: “Who is the Vice President of the United States”?
Patient: “Joe Biden.”
Doctor: “Who is the Secretary of State?”
Patient: “Hillary Rodham Clinton.”
Doctor: “Who is the Republican leader of the house?”
Patient: “An asshole.”
The fifteen people in the room all burst out laughing. I then muttered “Boelhner” and the surgeon congratulated me, saying I was the first patient of his ever to get all four answers right. The anesthesiologist on my left, Mark, began talking about his prior job as a staff worker for Congressman Patrick Kennedy.
I wanted to tell Mark that we were probably political soul mates, that Bill Clinton was the best President in my lifetime, that I had donated $300 to Hillary Clinton in 2008, and that I missed the three “Bs” of the Clinton years: the booming economy, the balanced budget, and most entertaining of all, those bimbo eruptions. Gasoline was a buck a gallon, the world was at peace, and the country’s future had never seemed brighter. My Slick Willie, I miss him so.
But I was too tired to speak so I only nodded. They then put in the permanent electrodes and closed up. The entire operation had taken two hours.
Two days later I had the second surgery, where they implanted the transmitter in my chest. I was asleep for that one. When I awoke, there was pain every time I moved my right arm. It was not too far from an incision in my skull, and they both caused me considerable discomfit.
My brother Kevin drove me home on November 3, 2011. To kill the pain, I was given a prescription for Oxycodone, that powerful prescription pain killer that drug addicts are robbing pharmacies to acquire. “Get off that stuff as soon as you can, it’s highly addictive,” said Kevin. “Just take what you need and get rid of the rest.” It was good advice. I used 25 out of 40 tablets the first week, and then flushed the remaining fifteen down the drain. I wondered, as I saw them recede down the pipes, how much those 15 pills were worth at street level.
“Dr. Sommers will see you now,” said a nurse, waking me out of my reverie about the past three years. Dr. Sommers, with his glasses, black hair and mild manner, was his usual self, courteous, polite, and good-humored. He spent an hour programming the neurotransmitter and sent me on my way, saying I would see him again December 12.
The next day I awoke and looked at the clock. It was 10:00 AM. This surprised me; usually the wracking pain in my limbs woke me up hours earlier. I then realized I was not in any pain at all. I also realized the following:
· The tremors in my hands, which had been as much a part of my daily existence as the coming up and going down of the sun, had completely disappeared.
· The rigidity was gone. I could walk now without a gait or limp.
· There was a little soreness in the feet, but I attributed that to work outs on the stationary exercise bike the previous two days.
· My ability to work in an office environment – critical to my job as an accountant – was completely restored. I was now able to type for extended periods without any pain or soreness in the arms or hands. I can use the mouse with either hand.
· The dexterity in my hands was back. I could retrieve my car keys from my pants pocket with ease, sign my name, button a shirt, and do a myriad other mundane tasks with my hands that the ordinary person takes for granted.
The operation, in short, had been a complete success. I felt like a character in one of those biblical stories, physically broken and hopelessly crippled, who Jesus stumbles upon and miraculously cures.
I began to revert to my old ways. As soon as I could drive, I went to a 6:30 AM mass at my church and returned to being a daily communicant. I started to walk again; three days later I went to the jogging track behind the Horgan Rink in Auburn and walked two laps; the day after four laps. I am now backing to an hour a walk. At the recommendation of family and friends, I have kept my head shaved; I was losing my hair anyway, and they told me it looked better this way.
This holiday season I have a lot to be grateful for. I have been given a second chance at life. A miracle has happened – just in time for Christmas,