My Life With Parkinson's and DBS Surgery
On the weekend before my surgery my daughters threw me an “If I Only Had a Brain” party.
I’ve been questioning what defines me: mother, daughter, sister, wife, friend, Christian, American. One would never know for sure by looking at me, right? But when you look at me today, you know that something is not right. At first glance, in that moment, I am defined, not as a mother of two beautiful daughters adopted from China, or as a wife of twenty years, or a daughter, a sister, a friend. I have Parkinson’s disease, and that is what defines me first. It was never easy getting beyond that first impression. I’m not bothered as much anymore by stares or sympathetic looks. In fact I am often moved by the kind gestures of strangers.
I was shopping recently at Trader Joe’s and the cashier offered to push the cart out to my van. I politely refused his gesture and proceeded to my van where he met me with a bouquet of fresh flowers and a warm hug. He could have just whispered a prayer or held a good thought, but for some reason he chose to make a connection with me that I will never forget. It made a difference in my life…sappy maybe, but true. Whether it was emotion that compelled him to go the extra mile or simply the impulse to do a nice thing, he didn’t hold back. I like to think that when he gets to heaven he’ll find that one of the many crowns awaiting him has my initials etched into the gold inside.
I was diagnosed with Parkinson’s in 2001. It was undeniable. There was only a slight tremor in my left hand, but a feeling of dread rushed to my very core. Memories flooded my mind. Both of my parents had been diagnosed with Parkinson’s. At the age of seventy-eight my dad passed away from pneumonia during a hospitalization resulting from a fall. My mother is now eighty-six and living in an assisted living facility in Massachusetts. I knew that they had struggled with embarrassment and isolation, but they lived in Massachusetts…and out of sight, out of mind, right? I am guilt ridden and very regretful for not being there for them. How could I have been so callous? I could say that I was wrapped up in my own life situation, but my problems were petty compared to what they faced. I am deeply sorry.
Thinking back, there were signs. There was fatigue. But everyone complains of fatigue. There was mental confusion. I blamed that on the fatigue. There were occasional tremors. Those of course were hereditary. My dad had clumsy hands. Little did I know that what was brewing inside me was this "thing" called Parkinson's that would have a debilitating and detrimental effect on me for the rest of my life. How could I possibly have been surprised when I heard my diagnosis? "Cheryl, you have Parkinson's disease." When the neurologist said those words to me, he sat on the examining room table next to me and held me as I cried. Through the wall I could hear Megan running around and giggling as Mike interacted with her in the waiting room. Megan was only four years old. This was surreal. I immediately sought a second opinion, and I never returned to that doctor again.
During the next several years the disease seemed to progress slowly, and I wasn’t too concerned. The tremors were managed with medication and at times the side effects of the meds were more bothersome than the tremors. There was chronic fatigue, sleep disturbance, shortness of breath, weight loss, and depression. After numerous changes in meds and dosage adjustments and an accelerated progression of symptoms, I entered a new phase of depression and worry. I began pulling away from everyone. I kept my family and friends at arm’s length. My greatest concern was keeping things as normal as possible for our daughters, Megan and Molly, now ages twelve and fifteen.
I absolutely dreaded social events. The first thing people do when you walk in the door is hand you either a drink or a plate, and to me that was frightening because of the tremors. Friends tried to be kind, but this was new to them as well, and I wasn’t going to make it easy. It was awkward and I was extremely uncomfortable. I wanted to be left out.
Thus began the isolation. You can only turn down invitations so many times before they stop coming. Years went by absent the sounds of company in our house. I had no girlfriends to share conversation with over a cup of coffee, no confabulations. We had no guests at our dinner table. I avoided social contact of any kind. Holiday invitations were a nightmare because I had to come up with new excuses and they were beginning to sound flimsy. But as I isolated myself, I also isolated my family. On the rare occasion when we had guests at our table, my daughters didn’t know how to act. Even the dog acted out.
Not only did I sever ties with friends, I began to pull away from my husband. I was full of fear and resentment, and I simply shut down. We stopped talking. We stopped sharing. We stopped communicating unless it pertained to our girls. I think we were both determined to shield them from the reality of our situation and still give them as normal a life as possible. That seemed to work well until they hit their teens, and they began to ask questions. I can only imagine their confusion. But our family was always unconventional…maybe I could ride that train for a little while longer.
Mike should have left me long ago. I treated him badly. But like Wiley Coyote, he kept coming back for more. Mike has an innate ability to see humor in everything. It’s something he needs to do to survive. On those occasions when I refused to talk to him, or laugh at his silliness, he would joke with the dog. I have to admit that there were times when I had to hide my urge to smile. He has always respected me and provided for me generously. He has always put my needs before his own, and has given me the space I’ve needed to mourn. He says, “Being married to me is a life sentence…nobody gets out of this alive.” Mike doesn’t hold grudges; he knows how to forgive and move on, lucky for me.
Our pediatrician, and long-time trusted family friend, approached me a few months ago and said that he had noticed that my condition was deteriorating at an accelerated rate, and it was seriously time to consider DBS surgery. He wrote down the name of a surgeon at Georgetown University Hospital, and after weeks of prayerful debate, I decided to call Georgetown and schedule an appointment to at least find out whether I qualified. I later learned that only 10 to 15% of those who apply are accepted into their DBS program based on mental acuity, emotional stability, and general health, and also whether their primary symptoms respond to the drug Levadopa. I did in fact qualify for the DBS program. After meeting with a neurologist and the surgeon I decided to move forward and have DBS surgery.
At that meeting I learned that during Phase I of deep brain stimulation surgery, a type of brain pacemaker is implanted while the patient is awake in the operating room. Neurosurgeons embed two small electrodes directly into the patient’s brain in the targeted area where the movement disorder originates, using sound to locate the precise location. During Phase II, the electrodes are attached to a neurostimulator the size of a heart pacemaker. The device can be turned on or off. A small electric pulse stimulates that precise part of the brain, immediately stopping the tremor, abnormal movements, or rigidity.
Phase I, when they would implant the electrodes into my brain, was scheduled for December 11th, and Phase II, the implantation of the neurostimulator in my chest, would take place on December 17th.
On the weekend before my surgery my daughters threw me an “If I Only Had a Brain” party. More than sixty people showed up at our house to wish me well. Everyone filled my calendar with commitments of dinners, dog walkers and rides to and from work for my daughter Molly. For an entire month our friends took care of my family. At the party, everyone wrote love letters and well wishes in a journal for me. Molly kept the journal from me until I was in the recovery room after the first surgery. My surgeon, the neurologist, and several of the nurses signed my journal, certifying that I indeed had a beautiful brain, because they had seen it!
We checked in at the hospital at 5:30 a.m. on the morning of the first surgery. After hugs, I Love Yous, prayers, and well wishes from Megan and Molly, I was escorted down to the surgical floor, accompanied by my husband. I changed into a hospital gown and I was immediately covered with hot blankets…so nice! Our pastor from the Chinese church and his young son came in for a few minutes and prayed with me, and he and our youth pastor stayed with Mike and the girls during the long wait ahead.
Meghan, the nurse who was assigned to stay by my side throughout the entire five hour operation, sat with us and explained in great detail everything that was going to happen to me that day. She was thorough, compassionate, and very reassuring. Next, the anesthesiologist stopped by to start the IV and he explained his part in the process. I liked him very much. Finally the surgeon came by and asked if I had any questions or concerns and reassured my husband and I that I was going to be just fine. He had performed hundreds of these procedures in the past fourteen years, and I knew with complete certainty that I was in the best possible hands.
They put something in the IV to put me in a state of twilight, and my recollection of the next hour or so is fuzzy. I kissed my husband goodbye and I was wheeled into the surgical suite where they did an MRI, catheterized me, injected my skull with a local anesthetic, shaved my head, and fitted me with the halo. I actually have no memory at all of any of this. I am claustrophobic, and if I was going to freak out, being secured into that halo should have been enough to send me running from the room! But, from the very moment we made the decision to move forward with the DBS surgery, I had no fear…absolutely no fear at all. It was at that time that I made a conscious choice to expect nothing less than a miraculous outcome, remain positive, and surround myself with positive people. The “Thumper Rule” was in effect at our house. “If you can’t say something nice, don’t say anything at all!” We simply didn’t allow negative talk of any kind, and I knew that my faith would sustain me, along with the prayers of my loved ones.
The next thing I remember is hearing the sounds of the operating room. I opened my eyes to see Meghan sitting next to me, holding my hand. At one point I got a little bit teary-eyed, and Debbie, another nurse, asked me if I knew why I was tearing up. I wasn’t sure. She said it was probably because of how kind people were being to me, and she was absolutely right. I was not afraid, sad, or under any discomfort, but I was moved by the kindness and compassion in that room.
One of the nurses brought my daughter’s camera into the OR and took amazing photos of the entire process. The doctor said that I would hear the sound of the drill, but he assured me that I would feel no pain, only pressure. He said that my teeth might chatter, and that was to be expected. The only way that I can accurately describe the sensation of the drilling is that it felt like I was crunching peppermint sticks with my teeth. The procedure took five hours and during that time I felt no pain or discomfort of any kind. In fact, it was a fascinating experience!
Four days later I was back at Georgetown for Phase II: the implantation of the neurostimulator. This time the procedure was done under general anesthesia and lasted two hours. I remember nothing at all from the time they wheeled me down to the surgical floor until I woke up in recovery. I felt some discomfort and a pulling sensation from the wires that were threaded under the skin from my scalp to my chest…but the doctor said to expect that. The neurostimulator that was implanted in my chest protrudes through the skin and is very noticeable. It was going to take some getting used to. But as with the first surgery, there was minimal discomfort. I was discharged the same day and we returned home to recover.
In late December we did the first programming of the neurostimulator and the tremors and dyskinesia were reduced by 50%. Since then I’ve had several more programming sessions to fine tune the neurostimulator, and I am extremely pleased with the results we’ve achieved. I am very grateful to my amazing friends and family who prayerfully and lovingly supported me throughout this challenging time. Thank you to my surgeon and hero Dr. Christopher Kalhorn, my neurologist and programmer Dr. Laxman Bahroo, and the Neurology Department at Georgetown University Hospital. I am most thankful to the Triune God, who has held me, as He always has, in the palm of His hand.
There are so many things that I’ve looked forward to doing again, and with this in mind I thought of something that would be the ultimate tremor test. I have always loved playing Jacks (also known as Knucklebones), and it was something I’d been unable to do for many years. I had been saving a new set of Jacks for if and when I would be able to play again. So, on the morning of my first programming, I tucked my new set of Jacks away in my bag and I took them along to my appointment. About an hour into our session, the neurologist gave me some meds to take and left the room. When he returned, he found me sitting crisscross applesauce on the floor doing tensies!
With the reduction in my tremors, I can now type on my computer keyboard with both hands at a nice steady pace, eat peas with a fork, take pictures of my beautiful daughters, take communion at my church without help, apply my own makeup, knit you a scarf, and even serve you a cup of coffee with a steady hand. And, finally…I challenge you to a game of Knucklebones, but be advised that I am currently undefeated at 37 and 0!
Peaches & Cream and Strawberry Cookies...A God Thing
It's been four months since DBS surgery, and I am celebrating in my kitchen tonight…a God thing. I believed these days were gone forever. My designer disease had taken over, and I gave in to defeat so much so that I thought it futile to pray about this. Besides, there have been earthquakes...children are starving...people are suffering and dying. In the grand scheme of things, I am nothing. I accepted my fate as my cross.
I remembered my friend the crossing guard, one stormy morning last December, as he held my trembling hands in his and he prayed for healing. I will never forget his words that morning. "Look at God, Cheryl…look at God," he said with such faithfulness. I was reminded that God can calm the raging sea…and He could calm this storm inside of me too...if I could just learn to let God be God.
Boldly I made preparations making sure there were others on standby…to take over…to pick up the pieces...of broken cookies and a shattered heart. My heart of hearts said, "You've got to be kidding...you can’t do this…it’s not possible…you haven’t even prayed. " A laughable thing for some…an impossible thing for me…a merciful thing for Him.
So I began to work, guarding my territory like a snarling dog…anticipating failure…methodically…meticulously…then mindlessly...until my thoughts drifted to the cares of the day…and a song that I had forgotten about…"’tis the gift to be simple ‘tis the gift to be free", and it hit me out of the blue…my lovelies had taken shape by my own steady hands…and like my friend the crossing guard, God took those trembling hands of mine in His and He said with such faithfulness..."Look at God, Cheryl…look at God." Glorious Peaches & Cream and Strawberry Cookies...it truly is a God Thing.
"So humble yourselves under the mighty power of God, and at the right time he will lift you up in honor. Give all your worries and cares to God, for he cares about you."
1 Peter 5:6-7 (New Living Translation)