After hearing I had Parkinson’s disease, I began to educate myself on treatment options. This is a small part of my book, “I Am Not Contagious” that details my appointment to discuss the possibility of Deep Brain Stimulation (DBS). *Spoiler alert: I did go through with DBS in April 2010.
“I had heard about a surgery called Deep Brain Stimulation (DBS) to help control the symptoms of Parkinson’s. I wanted to learn more about the procedure, so I located the Physician known for his extensive work in implanting these units in Newport Beach, California. Little did I know I was about to meet the man who would ultimately change my life forever, Dr. Christopher Duma. I sat in the waiting area of the Neurosurgeon and tried to occupy my thoughts with something other than the fear of getting my brain operated on. Looking around the room, I saw a stack of magazines and a bowl of candy resting on a coffee table. Why is it that at any physician’s office you will find the magazine “Highlights”? It is almost like the Doctors send each other memos about the latest issue and answers to the crossword puzzles.
I hear a female voice say, “Allison, can I get a copy of your insurance card?” Turning towards the sound of the voice I see the top of the receptionist’s head as she is looking down. I picked up my purse and approach the window. If there is anyone who should teach a class in multi-tasking, it is these ladies in the Doctor’s office. Without lifting her head and while continuing her conversation on the phone, she reached for my card. She pushed herself off the desk and rolled over to the copy machine.
As she scanned my insurance card, I could hear her say, “I know Mr. Jones, but the Doctor cannot see you this week, I am going to have to refer you to the emergency room.” I wondered what Mr. Jones was going through and how frustrated he must be by just getting the brush off in his time of need. The receptionist scuttled back to the open window and handed me my card without saying a word to me or even looking at me as she continued to fail miserably at calming Mr. Jones on the other line. I looked at the candy on the table and grabbed an oversized handful of tootsie rolls. Here I was waiting to talk to a person about getting my head cut into, and God knows what poor Mr. Jones was facing, and this woman appeared to be just going through her daily tasks with no emotion. I wanted to chuck my delicious treats at her, but I really did not want to waste a perfectly good tootsie roll.
A cheerful nurse appeared in the doorway and called my name. I stood up and followed her down the hallway to Dr. Duma’s office. He has a cozy corner office and a couch that you could melt into. He introduced himself, but I had already heard about the amazing work he does. He has removed tumors and helps people who have had a stroke. I was in the presence of a true hero. As he sat behind his gigantic oak desk, wearing a white lab coat he smiled as he read my medical file. He was probably thinking in his head, “I got this.”
Dr. Duma went on to tell me that DBS was a possibility and that it could increase the amount of time my medications were working all while lowering the amount of L-Dopa I currently had to take each day. I felt apprehensive; I had felt hopeless, it couldn’t be this easy. He detailed the surgery, “We break the surgery up into three procedures with one week intervals. We make a small incision on your hairline, and place the lead. You will be awake so we can make sure that we have the correct location to give you the best results with few side effects.” I felt nauseous. He continued explaining as the big screen behind him turned on and began playing a video. His words began meshing together and my vision got blurry as I began to cry.
I had so much running through my head. Would I have to shave some of my hair? Just like many women, my hair was a huge part of who I was, and I could not imagine losing even small patches! Dr. Duma assured me that he completely understood my fear and had perfected, using the natural growth of his patient’s hair, a small incision that would not affect my current hairstyle. I know that it may seem vain, but hey, I am still a young woman!
I was also afraid of more scars. How huge are these stimulators that are going into my chest? I had just accepted my tummy scars and my determination not to let it impact my bikini choices, but now I would be sentenced to a life of turtlenecks? Without missing a beat, Dr. Duma informed me that he could do a special placement of the stimulators going in through my armpits and placing them under my breast tissue. This way, I would still be able to wear clothing of my choice, without fear of people noticing my electrical enhancements.
I could not process the probability that this surgery was going to happen. I had been through hell and now this. I was bitter and resentful. I had made a new life for myself, and once again, my health tripped me. I cannot remember my response to Dr. Duma, I just remember putting my sunglasses on and grabbing another handful of tootsie rolls as I walked through the waiting room. I reached for the door, feeling the cold metal of the handle; I glanced back at the receptionist who was still on the phone. I felt annoyed that she could not feel my pain; I was once again, alone.”
bonnie says
My friend Allison,
I always feel inspired by your “Perky” personality and how you “Perk” us up to be our best…. Once you’ve been bitten by the bug of sharing and caring, your heart of servant hood arises. It oozes, with great gratitude for all the blessings surrounding you. It’s like your sensitive monitor turns on, “to seek and support!” Allison, you are a great example of someone driven, motivated by your helping attitude, filled with compassion, laughter and a deep commitment. Three months before I was diagnosed with PD, my dear friend of 24yrs, began her fight for life against lung cancer. I was 46 at the time. Together we were diagnosed with diseases usually beginning in your sixties. We became a team, to love on those who had no support, no close friends, no one to just complain to or be mad at…. Her Chemo was our “Open Door” to share our lives and diagnosis’s. We often had people guess, “Parkinson or Lung Cancer?” In disbelief of our ages and our degenerating diagnosis, a door would open. Bible in hand, devotion ready, we shared daily our Hope, then waited and listened. We heard voices from hostel, broken, people needing an ear to bend. Believe me many hurting souls are fighting far worst circumstances then ours. We started to see the hurt all around us. People need a simple hug or an ear to bend. Allison your words ring true! Giving, takes your focus off, of “woe is me” to, “yes, I was diagnosed with Parkinson’s at age 46 but I still have a lot of life to live and a renewed purpose.” PD becomes your motivator. A bad day is your fuel. A new life perspective takes a first step on your journey with renewed purpose. What some see as devastating, I chose to see as an open door, to come along side and care about people. The return is tenfold, another opportunity to defeat my personal sorrows. My friend with lung cancer, she’s been gone six years now and my personal journey is still in progress with her memory apart of my on-going story. Support groups, family and friends are now my, “Open Door” to share. Allison, You are a Super Star! An inspiration! A motivator with your heart on your sleeve! Thank you, for you’re fighting Spirit, through PD’s unending trials.
Bonnie (Granny B)
PerkyParkie says
And you said you had trouble writing Bonnie!!! That was great! I love “A bad day is your fuel”…I am going to use that today! Thank you for sharing. Very few people have such amazing friendships in their lifetime…a true gift!
Christine says
Hugs Allison!