My journey first started 20 years ago in May 1996. At an appointment with a neurologist, my left hand shook. My right arm hung there like a dead animal. I dropped things. I had a blank facial expression. My voice was soft and raspy. Typing on the computer slowed and became punctuated with errors. A typed word such as “home” appeared as “homeeeeeeee” on the computer screen. My fingers grew minds of their own. The neurologist requested that I take off my shoes, outstretch my arms, and walk with one foot in front of the other. My body fell hard against the cool tile of the exam room. I failed that test.
The neurologist struggled to get the words out when imposing the verdict. I struggled to listen and understand. She didn’t look at me when she said, “You have Parkinson’s Disease.” I was stunned. Why at the age of 46 was I diagnosed with the old man’s disease of Parkinson’s (PD)? What had I done to deserve this? It felt like I had just received a death sentence. When I arrived home after the appointment, my husband, Tom, was shocked by the bad news. He kissed me tenderly and reassured me with “we can work it out.”
For the nine years following my diagnosis (May 1996 to May 2005), in addition to adhering to my medical prescriptions, I managed my PD by using my typical coping mechanism of denial. I was ashamed and overwhelmed to be associated with this disease. I would schedule my neurology appointments before work at 7:30 AM so I could continue to keep my secret. I didn’t want to encounter the shaky folks in the doctor’s waiting room, and I didn’t want them to have to deal with my shaky self.
At one appointment in October 2003, my neurologist observed that my PD symptoms were worsening and that it would become necessary for me to take my medications more frequently and at higher dosages. Also, the side effects from the increase in medications would likely result in the development of dyskinesia, those wild involuntary movements of my arms and legs.
The neurologist suggested that I may want to consider a new surgical procedure called Deep Brain Stimulation (DBS) to reduce my symptoms of PD. From what I can recall, she summarized the surgery as follows: DBS involves the placement of electrical wires in the brain, electrical stimulation is delivered through these wires, and the symptoms are reduced for certain conditions such as Parkinson’s Disease, Essential Tremor, and Dystonia.
I had thoughts of holes being drilled in my head and electricity flying around—eeeeewwww. I bet that hurts. After all, it’s brain surgery.
I carefully considered the option of DBS. Since I was barely surviving and certainly not thriving. I felt that I couldn’t continue to live with all the shaking and tremors, involuntary muscle movements, fluctuations and turning off and on of the medications, and the meds sometimes working and other times not being effective. And I was becoming increasingly frustrated with my quiet and difficult-to-understand voice and the loss of strength in my voice (my voice had already weakened from Parkinson’s and three unsuccessful vocal cord surgeries). And then there was my ongoing difficulties with programming of the DBS settings.
Despite the some trials and disappointments, I also had some tremendous triumphs while on my PD-DBS path. With a friend, Valerie Graham, I formed a 501(c)(3) non-profit organization called the DBS Voices of the Rockies which is dedicated to guiding and educating those who are considering DBS, those who have had DBS and their families. I've received several awards in the community for my dedication and passion in helping those with PD and and DBS.
For fun and exercise, I take Broadway Dance classes and perform with the Rockyettes (not the Rockettes at Radio City Music Hall, because at 5 feet tall, I don’t quite meet the 5’8” height requirement). My yoga classes help calm my stressed and strained body. My husband,Tom and I frequently walk our energetic English Springer Spaniel, Rusty. Tom and my lives are less active in some ways, but more rewarding in others.
While I once considered DBS to be a death sentence, I have now converted into a life sentence. I am blessed.