This week I had an appointment at the Movement Disorder Clinic at Baylor College of Medicine in Houston. I’m blessed that I live this close to Houston and am still able to drive there. I’m blessed that I have a job where my insurance will pay for a portion of this doctor’s visit and the pending diagnostic tests that I’m facing. And most of all, I’m blessed that my husband is supportive and encouraging. But today, I’m not feeling very blessed about having Parkinson’s Disease.
After being diagnosed with Early Onset PD for over 6 years my two neurologists disagree about my diagnosis of PD. One is dead-set on me having DBS. The other isn’t certain that I can continue with the meds I’ve been taking for the last few years. Since these two neurologists were at a stalemate, I was referred to Baylor. I’ve been pumped about this appointment. I just KNEW that I would have a dead certain diagnosis of Parkinson’s Disease and then I’d get new prescriptions for meds that would help me manage better.
Well, surprise. I have to go off of all of my meds. I have to start a new carbidopa routine and then go back in six weeks to be re-evaluated. It seems that my meds may mask some of my symptoms and the guru neurologist wants to observe me when I”m not on anything that will cloud the true representation of PD, or Essential Tremor, or Parkinsonism.
So, for six weeks I will have worse imbalance, extreme jerking legs, tremors that I haven’t had in years, and more depression. For six weeks I have to be extremely aware of dropping my chin when I swallow, walking with my cane, operating my computer mouse with both hands (and maybe my face), and trying to sleep at night.
My family thinks I can do this. My family and friends believe I can endure the stress of being off of my dopamine agonists, anti-depressants, ADHD meds, sleep meds and carbodopa/levadopa for six weeks. I don’t know. I don’t know if I can do this for six weeks…. I don’t know if I can live like this.
You’ve read my angst over my struggles with drug companies, the withdrawal of the Neupro patch from the U.S. market, my frustration with being unable to write, walk or sleep. You know, like I know, that there aren’t any easy days when the body jerks, the drooling doesn’t stop, drinking liquids makes you choke and you pee on yourself. You know, like I know, that this insidious disease not only has no cure, there’s no conclusive diagnostic clinical test to verify that we have Parkinson’s Disease. You know, like I know, that we take this journey day by day. But tonight, I’m just not sure I can do this.
With a dopamine agonist and other drugs I thought I could at least face tomorrow. But without these, I’m just not sure. And tonight, I’m just not sure how much longer I can do this. Tonight I’m just not sure it’s worth trying to do this. So, what happens when I just don’t know?