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!

#ROW80 POST 13 SUNDAY CHECK IN – DYSTONIC DISAMBIGUITY, OR JUST SAY IT ALREADY

Arresting title, isn’t it? I had my first experience with dystonia in my right hand the other day. Dystonia is just a fancy, schmancy word for “cramping” up. But if this is a cramp, it’s an odd one. It’s more like “ball o’ fingers.” Anyway, it went away and life went on. It always seems to do that.

I’ve decided that if I’m going to do this writing thing, I’m going to go whole hog. This dipping a toe in, and then waiting around to see if anyone notices, or goes into a lather, or the world melts, before dipping in another toe is ridiculous. I never really did that as a musician. I just went out and flopped gloriously for a while. I failed auditions right and left and worked at stupid jobs. I played half-assed gigs and started getting better gigs through word of mouth. Better playing and not being so green helped a lot, too. I ripped and snorted my way through the musical world and had a grand time.

After I went back to school for computer science, and was applying for jobs, I received job rejections, due to my lack of experience in the field. Rather than worry about that, I threw my c.v. and GPA and all that good shit out on the Florida jobs network, packed up my wondrous viola, "Wolf" and went on a tour with some half-assed orchestra for a few weeks to make money.

When I came home from the tour, I found out that I had a response from IBM. I interviewed; they hired. I went to work. For the next 3 years, I worked for them. Sometimes in-house; sometimes from the road. Sometimes from my own single-wide. I helped a guy rebuild his utterly hosed O/S2 system on his ThinkPad 360 once. I remember pacing back and forth in my living room, watching the clock; it was 6 am. He had an entire hard drive’s worth of contracts worth millions. I had a plane to catch to Atlanta at 11 AM. This was before anyone saved anything on remote servers. We still had the portable hard drives that smoked and caught fire. Guess what happened to his backed up data? So, we were able to fix his badly scrambled OS/2 system, which was good for our in-house support team. It helped that I knew the difference between system file and a text file. I also knew not to erase my hard drive which is more than I can say for MS Engineer Dave who did that very thing at Verizon. Oops.

Anyway, with all that in mind, instead of just dipping in one or two more toes, I’ve decided to put myself out there and go for it. If we’re going to write, let’s not pussy-foot around. Let’s just get it over with, kind of like when you decided you no longer wanted to be a virgin and any old dick would do. Well, not quite like that. Good thing my folks are not still alive to see that one. Who am I kidding? I really hate ambiguity, almost as much as I hate obfuscation. Yet, sometimes, as much as I try to clarify something, or cut to the chase, or get to the point, I end up with such a tortured phrase, that when I do go back and read it, it either a) means nothing, or b) means something else. The worst of all possible worlds is c) d) and e) ad infinitum, where you return to it, repeatedly and it means something entirely different in a Rashomon-like way, every time! Argh!

So, with no further ado, I have decided at the urging of the lovely and extremely talented Jade Kerrion the author of "Perfection Unleashed" to participate in NaNoWriMo. This NaNoWriMo is a National Writing challenge where one writes 50,000 words in a month, that will, hopefully, turn into a novel when I am all done polishing and waxing. How insane am I? Well, that is a question. Since I am the one who stayed up all of February of this year and was Baker Acted for most of March, which by the way, I remember almost none if, with the ironic exception of St Patrick’s Day, and the last part of March, I guess on that count, I’m fairly qualified. Judging by my past life’s history? I’d say it might be business as usual and a good move for me.

I’ve certainly made some progress in this whole write-o-sphere:

1. 2^nd ROW80 (could be posting more) 

2. Editing essays from past (no, future, Duh) posts Homeless Chronicles in Tampa

3. Start planning out word count for NaNoWriMo

4. Bone up on my "Perfection Unleashed" portion of Jade's Blog Tour! Yes! For January 2, 2013. I am very excited about this. Further updates forthcoming for this portion. She along with, Jess Witkins' Happiness Project are also GoodReads friends, too. As is Amberr Meadows at Like a Bump on a Blog. 

On that note, does anything ever have a completely non-complicated acronym or just words anymore? This whole “PD non-PD” thing is driving me even more batshit. I may as well be typing with my elbows anyway. Dystonia = cramps. Dementia, Delirium = crazy (bipolar.) Tremors = shakes. Enough. Pictures say a thousand words. 

Smooth, even strokes when I move quickly. No tremors.

I slowed my movements down about 10X, you can see the "tremors."

They are not constant. This was done at about 6 pm.

Post 14 is going to be a very special post for a very, very dear friend in memory to another dear person who died recently. You will understand more why this hits close to home after the post. This will be in honor of someone close to me for someone close to my friend. I didn't know this young man, but that is not the point. I still grieve.