#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?

#ROW80 2ND QUARTER, WEDNESDAY CHECK IN, POST 12 – MUSINGS, WONDERINGS AND THE NON-SERIOUS SIDE OF LIFE

One of the other things besides music and computers that I find fascinating is this whole “Search for Intelligent Life Elsewhere.” Of course, we're currently running out of it here at home, especially in the US at a rapid rate, so I think we should quadruple our efforts immediately in our hunt for some entity that is a wee bit brighter than a door knob. To that end, I have dedicated some of my computers' awesome power to SETI@home.

When SETI@home is running, my visitors don't come. The last time they showed up, they pushed around a plate of symmetrically placed clementines I left out for them. I guess they liked them.

Fair enough. I've picked up 3 rather nice projects and since I know no borders or recognize no governments, unless they've pissed me off personally, I have picked up a project from Cambridge in the UK and one SAT, from Russia, along with SETI from Berkeley, California. Great, snazzy and all that jazz. I've processed some umpteen quadrillion petaflops worth of data just for SETI alone. We have our little glitches now and then, but knowing computers, I can work around the false-positives from this end.

Their Chamber of Commerce needs to get with the times. This is so 1947.

We just received a new version of SETI@home. V 7.0 and AVG will register it as a virus. There have been notes sent to all of us for about 2 weeks. I already knew this, when I saw the Seti signature in the AVG warning and ignored it. But, some poor shlubs have apparently decided their Boxes of Magic were infected and fired off notes to the Admins on the project. Needless to say, the support team is not supportive. It should be the “flog and public-shaming team.” They are not all like that, but there is a low tolerance for anything less than absolute wizardry in all of these disciplines. Most likely, the users are people who are just excited to be included in something rather cool. I just do my thing and hide. If something breaks, I fix it. That's why I belong to the ex-CIA team; those retired old bats up there in central Florida.

Still, there is a case to be made for approaching the “Box of Magic” as just that. Personal computers have been around for awhile and part of the domestic landscape for over a decade. Granted, tons of the documentation is less than easy to decipher and in fact comes across as a subset of what I call “Chinglish.”

Step 1. Please to open box forthrightly, as shown in pictoo. (no picture shown) Step 2. Please to remove CPU and place in upright fashion near floor, not wall as see in pictoo too. (picture of a monitor display, with cords) Step 3. Please to insert cable B in socket D, and cable C in socket Z as display in pictoo fore (picture of a set of pinochle cards) and so on. Please to go and drink yourself blind as show in pictoo 79. Yup, that I can do.

So, maybe it isn't the consumer's fault, but once on the internet, there is loads of good information available to the informed seeker. The key word here being “informed.” If your Grandma goes and googles “Delete Key, what to do with it,” the number one answer with a bullet is this:

I just started laughing all over again; picturing an Apple keyboard, with only a GIANT DELETE key. Less efficient than what? An electric brick?

I supported Apple products for all of 5 minutes at IBM; after I recovered from the terribleness of that experience, I swore off any and all Macs, and Apple-related gizmos and their stupid proprietary software. I hate, hate, hate, hate, hate it. Just hate it so much, it needs to all bleed to death, slowly. I tried to help some nimrod who was using Word 6.0 for his MAC, so help me God. He had me so flustered during the call, he asked me what a box was, and I shouted into the phone of this 47-hour long abortion of a call, “IT'S A THING SHAPED LIKE A SQUARE!”

There were times I wanted to answer, "ESP Help Desk." There were certainly days when pentagrams, divining rods, crystal balls, and Magic 8-Balls would have been useful. When a customer answers "It's broke," to your query of "And how may I help you today," (prior to open- and close-ended questions) you know you're in for a long, long ride.

Dead silence; 100 engineers quietly hung up on their own phone calls and turned their attention to me to see if I was going to catch on fire. I was standing, and bent over and pretended to tie my high-heeled shoe. For the ensuing 4 hours of this horrible, horrible call. As Agent Scully would say, “Never Again.” Give me OS/2 thinkpad platform calls, network, Windows, Lotus Suite, Lotus Notes, Mainframe calls. Fine. Come at me with a Macintosh call, you'd better be prepared to be hung by a headset from the highest cubicle wall (less than 5 feet, so I guess you'd better be really, really short, too.)

So, maybe I still should cut the people who post on the bulletin boards at SETI@home for help some slack, but they could at least read the damned notes. I've spent so much time around computers, that I think in Boolean logic. I'm certainly more comfortable around them, than some people. Trying to guess if people really mean what they say is a pain in the ass. Having lived with 2 people who were masters of mind games (one of whom was my mother, the other an ex-husband) has done nothing for my personality. Oh well. It is what it is.

Today, I went to the Byrd Center at USF, designated by the Parkinson's Foundation as a Center of Excellence and saw Dr. Deborah Burke, a Movement Disorder Doctor. She spent a lot of time with me and explained to me why she is not entirely convinced that I have Parkinson's Disease, but she is going to send me off for a DaTScan. My tremors have always been the least of my set of symptoms. Admittedly, I think because I spent so many years playing the viola, I have much stronger hands and forearms and a very strong right arm (my shoulders are broad for a woman, too) that I am able to work around or through the tremors, although they are slowly worsening.

What I've experienced is this; a lifetime of depression, starting at a fairly early age (around 16.) Ulcer surgery at a young age, 29, and bad choices. Father, an alcoholic, although not mean or abusive to my mother. He always had a job. My mother was manipulative and abusive towards me. I left home as soon as I reached my majority, but that is just escaping a bad situation; I had never developed any coping skills and continued to make bad life choices. In essence, a lot of crap, and I'm lucky to still be alive. Fast-forward to last year, after having been in yet, ANOTHER abusive situation, this one physical for a change, and I fought back. When JC and I settled in, all of a sudden I couldn't sleep. My father had died in his sleep, and I guess I had it in my head that this was going to happen imminently. Go figure. It didn't, but I woke up in the mental ward of St. Joseph's Hospital, having lost a month and found out I am bipolar. Oops.

I told Dr. Burke all of this and she nodded. We worked through the medications I'm on and nothing jumps out as a trigger, so we went back to my social history. Dr. Burke observed, “Kind of the chicken and egg scenario. We don't know where the egg and the chicken and then the alcohol and...” I started to laugh and she did, too. Neat lady and a terrific doctor, too. I can tell. Having worked in a teaching hospital for 5 years was a real gift. Doctors who wanted to teach and answer questions and didn't care who asked them, med students or music majors.

So, she launches into the mechanics of how dopamine is produced in the substantia nigra, that is located down deep in the old bean-aroo and that the main symptoms of Parkinson's Disease are caused by dopamine's non-production. The DaTScan will tell us this. However, if there is dopamine present, then we have to look elsewhere, for the cause of the essential tremor. Bear in mind that fully 35% of all Parkinson's patients never have any tremors. It is a truly elusive disease. The only other way to find out is by doing a biopsy of the brain. The good doctor said, “Unfortunately, you wouldn't know the outcome, because you would be dead.” I thought this was hilarious. I'm not too sure if she found my mirth amusing or disturbing.

The lizard part of my brain kicked in ironically enough, because the substantia nigra part of the brain is located in that general vicinity, when I heard the words "brain tumor." I still pulled it together in time for my uproarious response to the idea of a brain biopsy. Neither fear of mortality nor the idea of morbidity shall deter me in my constant search of mordant humor.

Imagine this in a 3-D form, and you can see how embedded the Substantia nigra is within the brain. That little sucker is responsible for making our dopamine, the overall "governor" of our autonomic functions.

The thing she is puzzled by is the fact that I no longer have any sense of smell, I drool (have been doing so, for about a year) and my voice is really hoarse and it's like some kind of weird anti-puberty. If I had just plain, old essential tremor, I should not have these other symptoms. Again, not everyone has the same PD. "Designer Disease," I call it. I used to have a pretty deep voice for a woman. Now, I'm not sure what it is. It gets squeaky at times, then, sometimes it's very hoarse. I will stutter when excited, and my diaphragm has become somewhat weakened, which makes it hard for people to hear me at all.

Today, I was at the Pharmacy trying to pick up some medicine. There's always got to be some idiot, who wants his shit NOW!

The hospital would have made a wonderful amusement park for this jerk. Wheelchair rides, physical therapy pools and the food is great! Whee! Dumbass!

There are 80 people it seems in line and I'm trying to talk over this asshole. He was talking to one of the other pharmacist's assistants, who had already told him his meds would be ready in 20 minutes, but he's still jabbering at her in Spanish, which she doesn't speak. I had been waiting and was told my meds were ready. So, I'm trying to make myself understood and talk over him. I finally lost my patience and said, “Sir? I'm trying to talk here. Do you see this cane? I may not have a strong enough diaphragm to speak over you, but I am sure strong enough to beat the shit out of you!” Standard Viola Fury response in public when assholes are present.

The guy said, “Uh yeah,” and scampered off. The pharmacist's assistant was a new girl and she giggled. I said, “you'll get used to me. I've been coming here for over 2 years.” I winked at her. The other pharmacy people asked me, “When is JC coming back to visit us? We miss him?” I said, “Pretty soon now. He's getting stronger. He misses you, too.” So, it was a pretty good day. I still don't have a diagnosis of PD, but I have the ear of a wonderful doctor, and I believe whatever this is, we'll figure it out, together. Last week, I walked a mile to the grocery store. I can't be that bad off, can I?