DEPRESSION - SOME PEOPLE JUST DON'T "GET IT"

Israel Robledo

(Reprinted from ParkinsonsOutreach.wordpress.com)

"Having seen the news articles today about Robin Williams’ Parkinson’s Disease diagnosis, this post from May 2013 is intended to share that not all that hear the news will understand the serious nature of what those of us whom deal with depression and Parkinson’s Disease have to endure. As a result of the untimely death of Robin Williams, we have been afforded an opportunity to raise awareness to a higher level and educate others to the greatest extent possible.

Some people don't have a clue what living with depression is about and just don't "get it". These are the most difficult type of people to convince that depression is real because these are the same people that don't "get it". It took me a while to realize this when, a few years ago, I asked a co-worker what she did to cope with states of depression or "down" days. She responded that she never got depressed. So much of my time had been spent on trying to figure out what I was doing wrong in dealing with depression, and all the while I had not realized that not everyone was affected by depression.

I have come to the conclusion that depression for me is not something to be embarrassed about. A mental illness is an illness nonetheless, and it is something that needs to be dealt with, attention brought to it, and encouraging people whose lives are affected to seek help to make their lives more bearable, which leads to a better quality of life. I've said that I've dealt with the symptoms of depression for more than half of my life. I tried convincing myself that it was something that all people went through. I tried counseling, that for me was a waste of time and money when I kept being told that I shouldn't feel that way and that there was more to look forward to in life. I tried different combinations of medications (prescribed by a family physician) for depression that seemed to make the condition worse.

The break-through for me, came from having dealt with depression in spite of having a Parkinson's Disease diagnosis, and being depressed as a result of having Parkinson's Disease. For many years, Parkinson's Disease has been known as a movement disorder. It has only been brought about in the last few years that it also has non-motor symptoms associated with it that had been dismissed sometimes flippantly as "it's all in your head", or "you're too young to have Parkinson's Disease, so you must be making these symptoms up'. As most of the people that you meet whom live with Parkinson's Disease, and those also affected by depression, what causes the symptoms may be part of the neurological system that includes the brain, but it is definitely not something that we sit around and conjure up just to make our lives miserable.

My movement disorders specialist, by virtue of having listened to the issues that I was dealing with, aside from the motor symptoms of Parkinson's Disease, recommended as part of my treatment regimen, an anti-depressive, that thankfully allowed for relief from the symptoms of depression. I see it as finally being able to step on solid ground, with a fighting chance of having a good quality of life, and knowing that things can get better.


What frightens me is that there are many people living with the symptoms of depression that don't know where to turn for help. If this post helps someone to realize that living with depression is not something to be embarrassed about and that it is possible to get relief from the symptoms, then sharing my journey will not have been in vain."

I linked back to Israel's original post and posted it here, because it cannot be stated enough: Depression Kills. Pure and simple, and when coupled with a diagnosis of some type of movement disorder (my particular brand of hell is called essential tremor, e. t. or "Parkinson's Lite" all the symptoms, only half the meds) the effect is all the more devastating for the simple fact that where you once had one battle that sucked, you now have two, and they REALLY suck. Probably the thing that bothers me the least is the fact that I am legally blind; no biggie.

But, as to depression and movement disorder, you are talking about two things that are just overwhelmingly hard to deal with. As Israel so rightly points out, you spend years of hearing idiot doctors say "it's all in your head" or supposedly well-meaning friends tell you to "pull yourself up by your bootstraps". In my case, this advice led to some near-homicidal behavior on my part, because I know it's all horseshit. The doctor was one of these guys who had one foot out the door on his way to retirement, and when he tried to blame my condition and my description of my symptoms on my bipolar diagnosis (which was new) I looked at him and said, "But, I had these symptoms BEFORE I was diagnosed!" to which he had no answers and no more straws at which to clutch. The primary concern for him, was that I was on Medicaid, and I would have to wait another entire year for Medicare, although I already had my full Disability, in a record 5 months time. 

To my one jackass roomie, who tried to tell my other roomie in the homeless shelter that she needed to "pull herself up by her bootstraps", it took two men to keep me from throwing her off the porch. So reminiscent of what I had heard from my own mother, although she herself suffered from depression and tried to commit suicide when I was seven years old, it brought a white-hot rage at the unfairness of such a statement. My poor mother, caught in the grips of a suicidal depression and a bleakness that was unfathomable at times, naturally took it out on me, the only child. But, her childhood was far worse. One of the wisest decisions I ever made was to NEVER have children and I can enjoy my friends' kids and now, grandkids.

But, this is about a man who was loved and adored by millions. What I find so striking and in hindsight, seems so apparent, but isn't it always, is this: Robin Williams comedy always had a tinge of the desperate to me. He WANTED and NEEDED to be liked so badly, and tried so hard. What seemed so effortless to some, seemed frantic to me and this is no criticism; it is an observation. God knows, I've had my share of neediness, and it's not worth a shit. I got waaay over that with husband number three, the God-Forsaken William Nunnally, philanderer extraordinaire. What a poseur and phony. 

But I am mentally ill; make no mistake about it. I tell everyone. I have seen God in an ice cube, licked the windows and tried to sleep in the fridge, during a psychotic break, after no sleep, because my Daddy died in his sleep. The fact that he died in 1987 and the psychotic break occurred in 2012, some 25 years earlier, makes no damn sense whatsoever, but there you are. I lost time, and spent a March I don't remember (Mental Awareness Month!) in the hospital. When I came to, the first thing the doctor asked me what I was trying to do. I wasn't entirely sure, but it wasn't trying to kill myself. I was trying to keep from NOT dying. . . or something. He lifted the Baker Act, which he declared the shortest in history, and turned me loose three days later.

I manage the SHIT out of my disease and my e. t., but I can pull the crazy card, when needed, since I live in an area where Batshit Street and Dumb Avenue intersect. We had the great good fortune of having the stupid guy who was a pain in the ass in the Family Dollar Store, become a pain in the ass to one whole city block, two blocks south, a week or so ago. Somehow, word got out that "he had guns or something, and a girl or something" and this part of town, being this part of town, the next thing you know, the Tampa Police Department show up, with what looked like fifty SWAT teams, and evacuated all of the block on 18th Avenue. So, no one could go to church, or the diner, or whatever the hell they do on Sunday mornings. 

Anyway, seven and a half hours later, they figured out with infra-red, or something; maybe a crystal ball, that there was only one individual in the house, so three or ten of the SWAT teams kicked the door in and cleared the rooms. They found the culprit, hiding in a back bedroom, curled up under one of the beds. I guess his Hogwart's Cloak of Invisibility had worn off, or the warranty was no good. Honestly, did this igmo think that once the TPD hauls out the heavy artillery, they're just gonna go away?

I bring this up, because I am in a Clinical Trial and occasionally I have to leave at around 6:15 am and catch the bus, to go downtown to get another bus to go to Armenia Avenue, where the Clinic is. It's usually calm and quiet, but a few mornings ago, I was standing there in my armor, with my cane and backpack, dark glasses on. Here comes Otis, or Ice, or whoever, after being up all night, pants dragging around his ass, and he starts in "Dey bitches took all mah money and cigs, now I don't usually ask, but" -- I hold my hand up. "Stop right there. I am not giving you any money and I don't smoke." So, Otis/Ice/whoever starts again. I hold up my hand and repeat myself, a little stronger this time. Take number three, "Dey bitches--" I explode "WHAT FUCKIN' PART OF I'M NOT GIVIN' YOU ANY FUCKIN' MONEY AND I DON'T FUCKIN' SMOKE, YOU FUCKIN' FUCK!?" Dude left the scene like his ass was on fire. I do not hesitate and if they want to get physical, I can do that to. Living on the streets and mental illness will do that to you.

Aside from that, I have to say that we are here for each other. I have a network of friends online, and in real life who suffer debilitating depression. I have been depressed this summer, but it's situational and personal, and mainly the reason I have not been writing. Like Stephen Frye, the sun will come out again, that I know. It's not over for me at all and my health is good. My life is not at all what I imagined it would be, but it's a rich and full life. I'm not a failure, and people respect me and what I "do" although sometimes I'm not even sure I know what I do. I still fix computers from home and help my neighbors. I even have an audition coming up, which I never expected. Trying to play with e. t. is a bit challenging. I have to play when I'm on those meds.

But, for someone like Robin Williams, who was so very gifted and so loved to have taken his life is such a goddamned shame and unconscionable. People still treat mental illness as if it were something shameful and it's not. It's a cold, hard reality and it's a lying bitch. If you listen to her long enough, you'll buy into her lies. I choose not to, because I scream, shout, yell it from the rooftops and from the mountains: I am MENTALLY ILL! But it's not who I am.

I want to give a very special thank you to the Parkinson's Foundation and to the Byrd Center at USF. They are one of the Parkinson's Centers of Excellence and they have provided me with the most AWESOME neurologist in the world and the finest of treatment, which my Medicare does NOT COVER AT ALL. Although I have e. t., it is said 1 in 4 people with e. t., go on to develop Parkinson's Disease. This is not a death sentence. It is a life sentence. We live every day in this moment; it is all we have. Don't waste it!

ROW 80 WEDNESDAY CHECK IN - "NOT-PD" AWARENESS MONTH

Sometimes, we have to listen to our hearts

Okay, so here we are, day 7 of NaNoWriMo and Day "I Forget" of #ROW80. I have just discovered that today is the 7^th day of “Parkinson’s Awareness” month, which I knew nothing about. Because?

I’ve been having one hell of a writer’s block for NaNoWriMo. I know what I need to say, but it’s so goddamned painful, I can’t get there from here.

I’ve also been busy talking to national desks about All Things Political, here in Florida. Said ‘desks’ will remain unnamed for the time being; it seems someone has paid attention to my rantin’ and reasonin’ and I am going to be talking about it post-event, whatever said ‘event’ may be. Jeeze, now I sound like I have a tin foil hat and am channeling aliens on my fillings. Rest assured, I am not. It has to do with a petition I horked up like a hairball and some First Amendment gobbledy-gook trampling I whined about.

But, mainly, where we are is? I am having problems and maybe this is just my inner cry-baby, AGAIN! Like, when is it not? I hurt, I have pain. Yeah, we all do. I feel stupid and shitty and lower than low even talking about this. I’ve had and am having, really the most fabulous life, in spite of my start in life and is spite of the shit I brought down on my own head. I really can’t complain. So now, here I am, whining. Doesn’t it just drive you mad?

So, let me try and put it in non-whine terms. There’s lots of ow. Odd ow; sharp and bizarre, like a thousand and one little imps with pointy implements all over my body and in my organs. All of them, including eyes, ears, ear canals, brains, throat, gums, anyplace that has nerve endings. ANY place. I cannot emphasize that enough. Go wild with your imagination. And not just pains. Different sensations, too. Cold, hot, electricity. Everything, except? Nothing. There are times I’m NOT aware of some of the sensations, if I’m directed distracted (another thing I do; word substitution) by something else, or misdirected. Along with all of this is just plain numbness or tingling. If I injure myself, as I did when I burnt my hand on the grill, another part of my hand hurt, not the burnt part. Confused, much? So, I’m describing physical sensations, not whining here.

Lumped in with the physical, but a cross-over to the mental, are sensory inputs. My hearing is completely fucked up. I have always had absolute pitch and I trained my pitch memory in school. 35 years making a living in music has provided an ear that is more a pain in the ass than a gift. The worst thing in the world is listening to music that is out of tune; even a little bit. The basses in the open here are sharp and the tempo at the beginning is a bit fast (a minor quibble) and beside the point. I can’t understand certain things said or written.

Either words sound muffled and rushed; indistinct and slurred, or they have no meaning when I read them and I must read them again, sometimes several times to make sense of them. Sometimes I must ask people to repeat themselves, to the point where I’m embarrassed, or feel brain-damaged when they repeat ever… so… slow… ly. Gah!

So, ears, skin, they no work like they did. Check. Howz about time? Aah, yes, the old sense of time. Wait. Wait, wait. Sense of time is not a physical sense. So, sense of touch, check. Sense of hearing, oh yes. Did I mention the jungle that is constant in my head? The hooting and hollering? Check. Reminds me of the time I worked the swing shift at IBM. There were only about 20 of us at the time and we were scattered around this huge room in a cube farm.

One dead Friday night, around 11 o’clockish, someone hooted. Someone else, way on the other side of the room “awk-awk,” “eek-eek’ed” in return. Pretty soon, it sounded like a Tarzan movie set. I was, as I always seemed to be in these things, the one responsible engineer, on a call, trying to explain, to the caller why it sounded as if we were in the midst of a Jack Hanna extravaganza. I never muted these calls. Whoever had to listen to my calls for Quality Assurance deserved it. Anyway, I have all of that without the break-fix. Just the sound effects. They come and go.

All of this writin’ and rememberin’ is my way of sayin’ I’m tired. I’m tired and I’m sick and I cannot concentrate with the flair and fervor that I used to display. What took me 45 minutes to do, is now taking me 2 days and endless re-writes and backing ups and editings. I hate it. I have lost my lightning-in-a-bottle pizzazz when writing. Maybe, I never had it and I’m only fooling myself. I think not; I know myself pretty well. But, I’m beginning to hate writing and that is scaring me. So, for now, I will write as it “strikes” me. I will still follow and cheer on and participate in every other way. Admittedly, it hasn’t been much of late. But it’s because of “this,” whatever “this” is. I will still play around in SDBN (Now With Added Moms,) too. I love this, I just don’t want to start hating it and I want to do quality, not quantity.

I have recently come a bit farther in the whole “family saga and what do I think” thing, and as wonderful as I think my mother was, I think she wasn’t in many ways, if you get my drift. That’s my bale to tote and I’ll deal with it. I am not feeling bipolar-y in the psychotic break sense, just depressed. I’ll get over it. Depression is nothing new for me. I’ve dealt with it since I was 16. As long as I don’t stay up for a month and try to drink the Dawn dish soap, I’m good. I think sometimes, we need these little setbacks.

JC is 65 and we just got through what could have been a major health problem. He’s diabetic and he had an infection that ran “hot.” Within 24 hours, his right leg from just above his knee, down to his ankle was  swollen and infected. We initially thought it was due to our new Perm-a-Kitty scratching him; but no. She was the hero. He had and infection from the colonoscopy he had done at the local Medical School last June. They were a bit “rough.” WTF?!?!? Probably bumped something. When kitty kneaded his knee, extant infection, spread like wildfire. Of course, get the medical community to admit that. I have promised this man, that after all of his crappy, horrible life, he will end it in light and laughter, or I will make him wish he were dead, so I need to keep that promise. He’s doing ever so much better, but of course, I have to think up ways to keep him amused. I love him beyond reason. He’s a wonder

The other thing? I need to get a handle on this “PD or not-PD,” so to that end, I am going to be hangin’ with my PD buddies, and trying to support some of the stuff that’s going on. There are studies and I think if I push hard enough, through folks like Jim Adams and his wife, Penny Adams. They are founders of  P.A.N.D.A,, a new group that helps people with PD and other movement disorders. Israel Robledo, YumaBev, Parkinson’s Humor, Parkinson’s National Awareness Month and countless other groups and studies. Maybe one of these groups will listen to me. God knows I would love to participate in one of these Motor Disorder studies, preferably with a psychological, musical slant. 

I’d be a veritable Petri dish of interesting finds. I’m just tired of fighting ever-increasing symptoms and trying to keep abreast with everyone else, with all that's going on. It may not seem much, but let's face it. I'm getting old and I'm frayed around the edges, and probably in the middle, too, if we're honest. My sugar gets out of control and I have seizures now. Those are new. I won't get Medicare until March of next year. Just got the paperwork and entered the last 4 numbers of my SSN for my DOB. I believe in saving time. I'm a dumbass. Shit, now I have to interact with an actual person.

So, look at it this way; this isn’t goodbye, this is see ya… less. I hate indecisiveness. Asperger Syndrome, along with some type of stupid Spock bullshit; ain’t no cure for me.

P.S. I've just been informed by Penny Adams that this is Alzheimers/Dementia and Diabetes Awareness month; my bad. Still ain't no cure. I'm sure I have one of the 3.