#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?

BLOGGING CHALLENGE FROM A TO Z APRIL 2013 – LETTER “P”

PARKINSON'S DISEASE

I have talked about the fact that this is Parkinson's Disease Awareness Month, as well as the Blogging Challenge from A to Z month. What I haven't talked about is the advancement of and discovery of my own manifestations of this complex, progress and elusive disease. It's different for everyone in the way it develops and how we choose to react to it. Simply put, Parkinson's Disease is a condition where your brain ceases or slows it's production of Levadopa, a sort of "governor" endocrine chemical that regulates several of your autonomic bodily functions. Without it, weird things happen.

Well, not quite this weird. I thought I was taking a picture of the cat in the next room. This is the stove. It's fun being legally blind, or bland as my "friends" tell me. One of them said I had a future in Paranormal TV.

Depression and other mental aberrations are a frequent companion, as well as the physical symptoms. I have more trouble with tremors and later in the day, in my hands and my head and neck than any other part of my body. I do have dystonia (fancy-shmancy for cramps) in my feet when I sleep and have horrific sleep disturbances and pain in my shoulders, chest, neck and back. The pain is atypical from normal aches and pain of aging and often mimics heart attack or stroke. The back pain is not at all typical and is a deep throbbing, almost to the beat of my heart and so deep that it can become incapacitating. I have had most of these symptoms going back for the last 15 or 20 years, which would put me in the category of young-onset. They were never constant and months would pass without any symptoms at all. I did not have tremors until last March.

 

This is the cat and JC. You can see 2 white feet and also tell we're slobs about bed-making.

A little history is necessary here. I was homeless from September, 2010 until August 2011. I spent 2 months in the hospital, taken from my then-house in a domestic. I had to learn to walk again. Lots of stupid on my part, but I learned and learned for good. I have a great life now. I was already legally blind and had been since 2004. Anyway, after all the trauma and an admission that yes, I was clinically depressed, I started treatment. I received my full Disability based on my hospitalization, after 5 months, a highly unusual move by the SSA.

So, after all the trauma and drama and blah blah, I moved out of my homeless shelter. That's actually how this blog started; with my Homeless Tales, but, my sweetie and I got moved and life was good. Until February of 2012, when for some odd reason, I started being just hyper. All the time. I couldn't slow down, I couldn't sleep. At all. I don't think I slept for maybe 1 night out of 8. I was doing ridiculous things like solving quadratic equations, blogging, gaming and watching “X-Files” all at the same time. I had always multi-tasked, but this was ridiculous.

This is the cat through my fancy lamp. I give up.

At some point, I slipped and I don't remember a thing. Just huge hunks of time are gone. The next thing I do remember, is being in the Mental Ward of St. Joseph's Hospital and I had an attendant. I was not restrained. Pretty soon, a psychiatrist came in, and asked me “What were you trying to do? Kill yourself?” I said, “No, but I couldn't sleep.” I had been out of sleeping pills and taken a bunch of benadryl, according to JC and I believe him. The doctor talked to me for a few more minutes, and he decided then and there to lift the Baker Act. He was nice and visited me a few more times. I noticed then, that I was having some tingling in both hands and the psychiatrist brought in a neurologist to look at them. I have very strong hands and there was no weakness in either of them. So, they kept me for a few more days and sent me home. My own psychiatrist tested me and said I was bipolar, which I know now to be true, although at the time, I thought, WTH?

Medication helps that. But, that psychotic break was a point in time for me. Pre-psychotic break, I did not display overt Parkinson's symptoms. Post-psychotic break, I do. The tremors started, very faintly at first, a week after my hospitalization, and have only worsened. Having this has made me dig into the literature and watch a lot of really horrible videos on YouTube, with boring doctors from the 60s, wearing giant suits from Robert Hall and huge black, plastic-rimmed glasses. But the information is sound, if you can stay awake through their lectures..

Nobody has the same PD. We all have designer PD. My friend Jim Adams and his wife Penny who run the P.A.N.D.A. foundation for Parkinson's have similar symptoms, but others are present as well that I don't have. My symptoms have tremendous psychological overtones. I have periods of dementia and have learned how to deal with them and overcome them. They are usually brought on by a precipitous drop in my sugar, although, I am not diabetic.The great thing is, I remember them now. Actually, to me? The hilarious thing is this; I'm legally blind. Before all of this, I had trouble getting the mascara wand back into the tube. Now, it's like a midway carny game. Some days I can't comb my hair. Not that it's an improvement anyway. Now, instead of being 15 minutes in front of, or behind my next or last stupidity or gaffe, it's more like 7 minutes. When I'm in Chat rooms, I tell everyone to get out their Mary decoder rings and live with it, 'cause I ain't fixin' no typos. And it's great for those nights when I don't want to cook, which is happening more and more frequently. “Honey? Do you mind cooking?” “No dear. Here's a nice bowl of Cheerios and water.”

It is what it is. I love life and this is just another speed bump. I have to think back to when I first was blind. I was incredibly angry and frustrated. This hasn't been so bad. There are times I get down. I had an incredibly dark period, not so long ago, but it always passes. Time will fix it. As Stephen Frye says, it's the only way to approach a bipolar condition. That can be applied to anything. The choice is up to us. My fabulous friend YumaBev, who writes "Parkinson's Humor" is one of the most singular upbeat, terrific people I know. Her life has been one of tragedy and heartbreak. She recently had DBS, which is short for Deep Brain Stimulation, to help curb her symptoms. Like most brain surgeries, you have to be awake. That right there is reason for me to NOT have that particular procedure. If you are going to be poking around in my noggin, I want to be stone-cold out. "To each his own," said the pig as he kissed the cow. Anyway, Bev blogged about it and she was scheming trying to figure out a way to live-blog her surgery. It was pretty hilarious. But, that's Bev, one of my true joys and inspirations in a world that has few.

This is pretty much how Bev always rolls! My hero!

BLOGGING FROM A TO Z APRIL 2013 – LETTER “M”

MIND, MOOD and MEMORY

I blogged about this for the Parkinson's P.A.N.D.A. Foundation once. At least I think I did. As I remember it. The funny thing about these three “M” words, is that they are closely linked. We tend to remember our experiences colored by our moods at that moment; good or bad, or blah, or happy, or mad. An obvious statement if ever there.

But, how reliable are our memories really when we are mentally ill, or are dealing with something like a bipolar condition? Or Asperger? Is it possible to go back later on and dissect some incident of the past in a rational manner, when you weren't in a rational state of mind during the incident itself?

My brain is attached to my mouth and it's going constantly.

I think if one is able to look at one's own behavior dead on and honestly, that answer is “yes.” I've done it. Over the past year, I've learned a lot about what it means to live with all manner of odd behavior; running the spectrum of being numb (not catatonic) to just short of schizophrenia. I have a cousin who is schizophrenic and has been most of her life. Consequently, I am shunned by the rest of my surviving family. Not that I give a damn.

Other than my first psychotic break, I've been able to either get on top of my episodes of dementia and remember them, and I've only come close twice to full-blown psychosis again. These are usually brought on my physical triggers and I know I have to get to a hospital. The saving grace is, I remember them. I didn't the first time and that must have been a doozy. The 2^nd time, I called 911, here came the fire trucks and half of the Tampa Police Department. Oh my! I remember Officer Fair and he lived up to his name.

Officer Fair was nice, but nervous. I think he thought I might bite him. My dad cured me of that when I was 4. He bit me back. That shit hurt!

So, either because I'm a fast learner, or because I don't want to spend my life in either the Mental Hospital or Jail, I figured I should learn some of the triggers. Frustration, total lack of understanding by people who should know better and problems with my sugar play huge issues. It's amazing how large a part some of these things can play, especially if they build up day by day. But, everyone has these issues and they don't go off the deep end. This is where the Parkinson's comes in. It is a constant emotional roller coaster. Up and down. There is no even keel. It's like bipolar on speed.

Every once in a while, I get the bradykinesia (freezing, or stop-action movement) associated with Parkinson's. It's weird, just weird. Mostly, I'm ahead of myself. Chronos is broken.

Anyway, I think it is possible to go back and mindfully dissect those memories. Bad mood, good mood, to draw conclusions that will help in the future. I really, really don't want to wake up in some Mental Ward, having been Baker Acted (committed in Florida) again after a month's sleeplessness, with a psychiatrist asking me, “Just what were you trying to do? Hmmm?” 

Source: www.parkinson.org and me.