Guest blogger Bev Ribaudo was diagnosed with Young Onset Parkinson's at age 47, but her symptoms began in her late 30′s. Having always been an optimist, Bev decided to fight this disease using humor, sharing her observations at Parkinson's Humor.
You know the saying, "I need (fill in the blank) about as much as I need another hole in my head"? Well, it looks like I don't need another hole in my head, I need two!
We left at 6 am for the 200 mile trip to Tucson, Arizona. I skipped my Parkinson's Disease (PD) medications as directed and even though it was an easy drive, I felt much worse than I did on my experimental OFF day. It was all I could do to get out of the car. I was very slow and rigid. The t-shirt I wore was accurate. Hey, it was a serious trip, but I needed to keep my sense of humor.
We arrived early and as my Wonderful Husband signed me in, Dr. Norton was calling my name. We followed him to an exam room and sat down. He asked me about my symptoms, medications and how long ago my PD started. He spoke softly as he explained the DBS (Deep Brain Stimulation) procedure. DBS consists of electrodes inserted in your brain and a generator (the controller) implanted in your chest with wires running under your skin between them. I watched his hands carefully, they weren't shaking (a good sign in a neurosurgeon).
He has done over 600 of these operations with a very high success rate. In other words, patients had reduced PD symptoms, needed less medication and therefore had less side effects (All the things I was hoping for). He checked my ability to move against opposing forces and my reflexes. He had me stand, then got behind me and pulled me backwards. I caught myself and maintained balance, another good sign.
He thought I would be an excellent candidate for the surgery and recommended inserting electrodes in both sides of my brain, but using a single generator. Since I am so thin, they may have to place the generator in my abdomen instead of under my collar bone (I guess I don't eat enough chocolate chip cookies). He didn't think I would develop any speech or balance problems, since I didn't have any now. Maybe all those years as a loud-mouthed tumbling cheerleader are paying off.
I told him about my adhesive allergy and he said they'd figure something out. I asked about my hair and he said they just shave off a small section where they insert the electrodes and I could wash the rest of my hair the next day. So, it looks like I won't have to wear a Dolly Parton wig, but I may have to learn how to do the Donald Trump comb-over!
Since my appointment was over, I took my PD pills. It was noon. I shuffled out to the car and we headed for home. We stopped for lunch at Panda Express and the saying in my fortune cookie made me burst out laughing.
Be adventuresome, try a new look.
The ride home was uncomfortable. I felt much worse than my trial run. It must be from sitting for so many hours. I usually walk around and seldom sit for more than 30 minutes at a time.
By 9 pm, I was exhausted, so I took my last PD pills of the day and went to bed. It took a few days before I was back to my normal self.
I will keep you posted on the next steps and hope to have the surgery done before the end of this year. I can't imagine what it will feel like to possibly be ON all day without the horrid side effects. I can't see myself being any happier than I am now, but who knows, maybe I'll be able to enter America's Got Talent. Yeah, right. (I can hear the buzzer already)