I get asked quite frequently, “If you had to do it all over again, would you still elect to have Deep Brain Stimulation surgery (DBS) to help control your symptoms of Parkinson’s disease?” Why do I post this now? Well Monday, I will be going into the operating room and having my stimulators… AKA batteries replaced. Kind of like maintenance on your car. I need a tune-up. But seeing as DBS is an elective procedure in the first place, I have the choice if I even want to continue using the stimulators. This got me thinking about 6 years ago, when I was officially diagnosed till now. Do I wish that I had waited to do the surgery? Even more… Do I regret the deciding to do DBS in the first place?
Follow me back to March of 2010. I was taking Sinemet five to six times a day and barely controlling my symptoms. I could hardly keep up with my normal gym regimen. I had begun to assist my left arm and leg during my daily activities, which was alarming, because my body just did it without me thinking about it. I began to trip and drag my left leg but that was not the only thing I noticed; my left arm did not swing when I walked. If I consciously thought about swinging my arm, I could, but the moment I got distracted it would just hang there limp and dead. I had done much research on my own about Parkinson’s disease and felt that although it was unlikely, the symptoms described on the internet sounded just like my lame lefty.
I can remember the day that my fear became a reality. I sat in an uncomfortable flower-print chair in my neurologist’s office. The nurses in the front office were talking to each other about what type of sandwiches they would order for lunch. The background was filled with traces of annoying soft-rock music and an overpowering smell of stale coffee. It was apparent that someone put much effort into creating a calm and relaxing environment, but at the moment it felt as irritating as wearing an itchy sweater in the desert.
A nurse came into the waiting area and called my name. I followed the nurse as she guided me to the exam room. Hearing the diagnosis — “You have Parkinson’s disease. There is no cure, and you will struggle with this the rest of your life.” — was like being punched in the stomach. I felt cheated out of a life that held so much promise. I looked down at my rigid left arm, resting lifeless on my lap. It felt alien. This was not the same arm that helped me make the cheerleading squad. These were not the fingers that I used to play the flute in my high school band.
I was angry, sad, and scared. You can prepare for a new job, a baby, or a tropical vacation. But there’s nothing you can do to prepare to watch your body deteriorate at the age of 32. I was shocked by how fast my disease progressed. Looking into the mirror every morning became the biggest challenge of the day. The expressionless face that stared back at me seemed unfamiliar. I felt damaged. Walking was starting to become a struggle. The slowness of my movements and the rigidity started to wear on me. I feared that anyone who saw what I had become might pity me or look down on me.
That was when I decided to become my own advocate and started educating myself on treatment options. This is when I came across Deep Brain Stimulation. It was a personal decision to make. Did I want to deteriorate, lose muscle mass and mobility, just to wait until I was “bad enough” to get the surgery? Was I going to spend the most awesomest years in my 30’s struggling with PD? Well hell no! *Snapping my fingers in the air. I got DBS surgery done the following month. Yes, one month after my official diagnosis. It’s like I always say, go hard or go home.
Now I wanted to put my mind at ease knowing that I made the right choice. So what is a girl to do? How about turning off the very device in question? Yes folks, in an effort of guinea pigging myself out, I turned off my stimulators and then filmed myself. This would show what life would be like for me sans DBS. Now before I continue, my lawyers wanted me to put in a small disclaimer…
**Now readers, before we watch my video, I want to remind you that my blog is strictly for entertainment purposes and is not meant to diagnosis or treat any medical illness. The choice to turn off my DBS stimulators was my personal choice and I did hit the light switch off while in my Movement Disorder Specialist’s office. I am not a doctor, and although I am freakishly smart, you should probably follow-up with someone a little more serious than myself if choosing to become a guinea pig.
Now onto the show! Here is a video of my dog Crash and I dancing in the kitchen. This shows what I look like with my stimulators on and my meds are working:
And now, Ladies and Gentleman! Feast your eyes on the Perky Parkie as she bravely turns off her DBS system and hits the record button on her phone. Notice that my facial expressions don’t change. It’s like I have just learned that I won the lottery but then was told my dog died. I have a pretty exceptional poker face!
It is kind of scary seeing what my Parkison’s would be like without the help of Deep Brain Stimulation. Having a visual of how much those little battery packs do for me each day just reaffirms that I made the right decision to get it done early into my disease. And while I understand that DBS his not for everyone and that it is a very personal choice, I can go into surgery on Monday with the confidence that I am making the right decision of getting fresh new batteries for this energizer bunny!