#ROW80 POST 13 – THE QUESTION

“What makes you think you have Parkinson's Disease?” Dr. Deborah Burke asked me this question after several minutes of very insightful discussion and quick, probing questions, which I readily answered for her. I had done my homework and I realize that these doctors at the USF Byrd Center have only so much time to spend with their patients, even the new ones.

Dr. Burke is kind and compassionate and again, possesses a kind of intuitive grasp of things, while maintaining a discipline (staying in her “box” as she terms it) to help keep a patient on track. And lordy, I am a handful and I know it. Having worked in a teaching hospital for 5 years, has given me the ability to understand systems at an extremely rudimentary level, but when you're working with doctors who are teachers by nature, they don't care who's asking the questions, even if it's a wet-behind the ears viola student.

The hurly-burly chaos of a huge hospital that housed some 9,000 souls, many from different countries, also sharpened my skills as an observer, rather in the way the ancient Greeks learned about how things worked. The power of observation is so overlooked; and is a marvelous tool, both within, as well as without. I, of course didn't think of this at the time, when Dr. Burke asked me a question, which literally shut my pie-hole, for a minute. I was flummoxed and several things came to mind, and I went “ah, err, lemme get back to ya on that one.”

She was okay with that. She had me do the walk up and down the hall without whackamole (my controlled fall thing,) some hand thing that reminded me of that awful Disney song “We Are Siamese If You Please,” (my father always cringed at that) and try to draw a spiral, after hers, which was shaky. She then had me write a sentence, which she said, almost apologetically, “this looks like essential tremor.”

We had already gone over the lack of smell, drooling and my horrible new voice, which is just, whatever it wants to be, except what it was for 56 years. Hoarse, croak, weak and unintelligible. I'm going to learn semaphore; the flag thing. Then I can lug around 50 or 60 flags. I'll get it wrong, and tell people to walk out into traffic, which is a bonus around here anyway. It will be quicker than trying to holler and then spitting on people. Another bonus for PD or whatever this is.

I have noticed that doctors of all stripe seem to be really hung up on the tremor thing, but it's not that simple. I have them at different times. They stop when I do something that requires real strength and I have tons of that. I can't play my viola because the delicacy needed to balance the bow and do spiccato and skip around and just even pull a long bow-note isn't in my bag of tricks, or it's hiding. So, I have to leave it alone. I get almost suicidal at the thought of NEVER being able to play, even if it's just for me and that is not going to happen. I am a master at interpretation and long, slow passage work. I'm not boasting, just stating a fact. But I need to be able to feed that beast.

Nobody puts Wolf in the corner.

Play me NOW!! I'm gahddamned history. I was built only 10 years after Beethoven died. PeeDee, ShmeeDee! Get off your lazy ass and play some 3-octave scales. A minor. NOW!!!!!

So, when I thought long and hard about what Dr. Burke asked me, I came up with this answer: intuition, but I didn't voice it. I had my first tremors a week after I was released from the mental ward after my Baker Act. In the middle of the night, when they woke me up. I had experienced some numbness in my hands and forearms in the hospital, but not tremor one.

The Byrd Center also houses the Alzheimer's study and Research Center

The only thing I knew at that moment about Parkinson's Disease, was that Michael J. Fox and Muhammad Ali had it. Why I made THAT connection, I have no idea. Rather than being scared out of my wits, I started reading about different pathologies and etiologies of various neurological conditions. I realized as I was reading, that I had been experiencing some type of PD symptoms for at least 15 years. 

I also realized, through remembered observation that my mother had that type of early-onset disease. Tremors, thousand-yard stare, along with her depression and suicide attempt(s). These were many occurrences with her. Not just once, or twice, but over a course of decades. Coupled with my father's alcoholism, and I was very upfront with Dr. Burke about this, along with my own history, she understood, what I was saying. I didn't tell her about my intuitive reaction. I'm saving that for the follow-up, whatever the diagnosis. She's been so accommodating and kind. This is the type of doctor you want to keep, FOREVER.

We laughed when she said, “I'm sorry to keep harping on this, but your own depression, prior to your psychotic break, when did it begin? Because I get a sense of the chicken, and the egg and the alcohol and the chicken, the egg...” making circular motions, until she got all confused. I said, “Yes, I understand.” Grinning, I said “I was 16. My mom was the co-dependent and living hell. My father was not unkind, but he couldn't cope. I just saw blackness, but I never considered ending it. It's just been there.” Like anything, it waxed and waned. Situational and work, diversions; I took little medication. It's impossible to play the kind of music I've played and take anything. I didn't even drink caffeine. One year, towards the end of this impossibly booked tour, we were in Miami and had 3 performances of Gilbert and Sullivan's "Mikado." I was dead on my feet and drank a Coke. I could hardly keep my bow on the string. Oh, and the "Mikado" is 3 hours long. Disney makes you play like that; it's one reason I ditched them for Warner Brothers, besides who doesn't want to play "What's Opera, Doc?"

Fun Fact: "Ride of The Valkyries" by Richard Wagner (the rest of that entire scene is a bitch) can be played in 4th position on the viola and you barely have to lift a finger! But you sure flap that bow arm! Impressed? Yeah, me neither.

So, all this time; there are always stressors and prices to be paid. My parents were not bad people. I, by far, did not have the worst childhood. I have heard so very much more tragic stories from people I love dearly and people who are far better than I. I have no one to blame, not because my parents are deceased, but because they did the very best they could with the meager tools they were provided. My mother and I mended our broken relationship before her death, which I am so very, very thankful for. My father, in spite of his lackadaisical ways, was my primary caregiver. Although, my mother bore me, my father brought me home from the hospital and raised me. That is why, I was never a very good girl-child. Being an only child I would prefer to while away my time with my computers, music and writing. I made a decision early on to not have children, and I am glad I stuck by it. It was probably one of the few wise things I've done. JC is the other; he is my rock.

JC always knows how to show me a good time. I laughed like a hyena over this. Sweetbay is so used to us, they don't bat an eye at any of our goings-on. Of course, the store is on Nebraska Ave., 33605, where everything happens. This is just one of the many reasons I love him unreservedly.

It took 10 minutes of me hollering and telling jokes and being, well me to get him to smile. He usually looks like a wooden Indian, or like someone just told him his house burned down.

The other thing I have begun to experience and follow as in over-riding my logic and letting intuition take over, as in the case of PD (I am almost 100% certain that is what this is) is that with the winnowing away of more of my senses (sight, smell, some of my touch, hearing is odd, hallucinations sometimes, when sugar drops) is a heightened increase in compassion and empathy for others. This sounds like some kind of hypocrisy, because I'm not good around people, but I have Asperger, or "doesn't play well with others," as they used to say. My psychiatrist and I laughed about this yesterday; it's agreed that I have bipolar I, but "pseudobulbar affective disorder: cry at nothing, laugh at morbid shit?" I told him I've been accused of bad taste for years and I don't need a pill for it. It's my bad taste. Anyway, while still quick to humiliate and take on the real asshats of the world, both verbally and physically, I am even quicker to recognize and praise or aid those who need it most.

courtesy: James Thurber's "My Life and Hard Times"

Caption Reads: He Caught the Same Disease That Was Killing the Chestnut Trees

I read most of James Thurber's books by the age of 9 or 10. For some reason, I found this hilarious. I still do. Leave my bad taste alone. It's funny. I don't want blah. I want the misery, hopelessness and despair, because behind that is the joy, elation and hilarity of life.

Yesterday, as I was leaving my Psychiatrist's office and making an appointment for August, I felt this jolt on my right elbow. In any other situation, I would have whipped around and been pretty keen on finding out who was invading my personal space. Something stopped me from reacting that way, however. I carefully turned around, and there was this darling little girl. She was a child with Down's Syndrome and she had a cast on her right arm. She pulled on my shirt again, and waved and smiled. I waved and smiled back. Her older brother was there, too. He didn't have Down's Syndrome, but what the Hell. I pulled on his shirt and waved and smiled. He did the same. Their Mama grinned. I was so elated. Beethoven-elated. “Ode to Joy” elated.

So, I believe I have PD. We'll see what the DaTScan says. Then, as Dr. Burke says, “We'll go down SOME road together.” Very cool. DaTSca is June 20th, then I make an appointment for my followup. So, we shall see, what we shall see, no?