Sunday, January 12, 2014


I thought I'd just scribble down a few words here before I go to bed for my Sunday check in. You see, it's 5:00 a.m. on the east coast of the United States, and here I am, the infernal bat, unable to sleep. I haven't written much about my Parkinsonism, or my e.t. or essential tremor or “Parkinson's Lite” as I call it, because the disease doesn't have me, I have it, and by the throat if you will. It does not define me. It does however, have its moments of just pure meanness. It won't kill me, although before Primodone, there were times when I wished it would and in haste.

What it doesn't do is let me sleep well. I have never been a restful sleeper and I have never been a cheerful morning day-type person. My mother was. 5:30 in the goddamned A of M, she'd be up, perking coffee and singing with the birds and I wanted to go out and practice my non-existent skill of skeet-shooting on her and her little feathered friends. So, we differed in that particular behavior.

I've always been a night owl and as I grew to adulthood, music, besides being the love of my life, was a great career, seeing as how the industry, such as it is, had the decency to never start a rehearsal before 10 a.m. Concerts were always in the evenings, or afternoons in the Opera, and when I worked in IT, I usually worked late afternoon shifts. It's been decades since I've had to live by an alarm clock, and thank the Christ, the few times I've actually had to get up for something, it was usually an operation or some medical test, that was going to render me comatose, so I wouldn't care how miserable I felt until 3:00 p.m.

I like to tell people, “Yeah, I get up at the crack o' noon,” but sometimes, it's as late as 3:00 or 4:00. When I first started taking Primodone for my Parkinsonism, I was sleeping almost around the clock. I thought, “Gee, this is terrific! No more tremors, but then how would I know? I'm not awake enough to figure out if they're there or not.”

As my body adjusted to the drug, I began to sleep more like a normal person, or at least I was hibernating less. I'm not sure what it was. But, I found that as I did more and more, I still needed that 8 to 10 hours of sleep; that helps tremendously in keeping the tremors at bay. The “inner core” tremor is the most horrible feeling in the world, and when I'm tired or anxious, it comes back. Sleeping, and eating, walking and exercising help all of that. I still have no sense of smell, which on Nebraska Avenue, may be a good thing, when we have one of our ferocious rains and the sewers back up. I really didn't miss that lovely aroma over the summer.

As I walk and continue to get stronger, I amaze myself. I am not supposed to be able to walk briskly for three blocks carrying 19 pounds of crap from the Dollar Store, but I did just that very thing today. Because I have COPD, and have had the lung function tests and was told that I had a lung capacity of 43%, I thought, well, shit, some day I am going to be on oxygen, but now, I wonder.

I stopped smoking over 3 years ago, and I take Spiriva religiously. Because of our stupid health care system in Florida and the United States, even though the State of Florida and Hillsborough County spent upwards of 500,000.00 dollars getting me back on my feet and walking in 2010, when I was awarded my SSDI, I had to wait 2 years to get anything resembling health care coverage, and I was unable to have anything done about my COPD, so left untreated, it worsened. Thank you, Rick Scott, you prick.

Well, now, I find, that after nearly a year of treatment for my COPD, my lung capacity has increased to the point where I run out of my Spiriva inhalant before I run out of lung capacity, which means my lung capacity has INCREASED, which I do not think is supposed to happen. But, there are lots of things that have happened to me, that were not supposed to have happened; per my physical therapist at TGH, it was unlikely that I would walk again. I'm all over the place now and stronger than I have been in decades. I think it's reverse psychology. DON'T tell me I cannot do something, because I will prove you wrong every goddamned time. I'm not a quitter; I have the capacity to think strategically and think about things and stick with something for the long haul. It's the persistence of persevering over time.

I find it to be the same thing with writing. Crappy passage? Go back to it later. If something is not working, I think for me, I need to leave it alone and go to another well for inspiration and come back to whatever my particular roadblock is later. If I continue to frustrate myself, it just gets worse and I lose my voice. With that in mind, I've found that it makes the editing process a little easier, but messier, as I am not the most organized person in the world.

So, that's my check in. It wasn't the best week, but I got something done. I hope everyone had a good week. It was freezing cold here in Tampa, and astonishingly enough, it made me yearn for the frozen tundra of Michigan and Lake Superior with my Daddy. Ah, he was something else.

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