5 Important facts Micheal J Fox never told me about Parkinson's

Fox, Muhammad Ali and Bighead at a swanky fundraising gala.

Okay, in full disclosure, I have never met Mr. Fox and I'm sure he is not aware of me either. But for the purpose of the bit, and the fact that he, like me, has Parkinson's Disease, and is famous, I have taken some literary liberties, so to speak, to illustrate some of my points. As I have mentioned in the past on any social media, 'If you've read anything that I've ever written, and taken it seriously, I apologize. But that's also on you'. I don't recall ever making a salient point in anything I've ever written. Now, Mr. Fox appears to be doing great work to raise dough for Parkinson's research and has certainly raised awareness and fostered better understanding about the condition. His apparent unshakable optimism is certainly inspirational, but also a little annoying, to be honest. Being me, I have other techniques besides optimism that I use to cope with having Parkinson's. Because, although not tragic, having this neurological condition is a giant pain in the ass. It can really slow you down, physically and mentally. It is a constant bother and is often unpredictable as to how it affects your daily routine and overall lifestyle. How I deal with the subsequent stress, as with everything else I am confronted with, is to employ humor.And my kind of humor has a tendency, on occasion, to be 'dark'. For the purpose of making light of, and tolerating aggravating situations, I will often respond with cynicism, profanity, morbidity, pathos, mockery, profanity, song and dance, whatever it takes to keep me from slamming my head in the refrigerator door. I use the whole emotional toolbox. Mostly. But optimism, not so much. So when I read quotes from Micheal saying that, 'with gratitude, optimism is sustainable', I involuntarily roll my eyes. Sorry. It's just me. Now, I truly do appreciate the fact that many in the world have it worse than I, and that there is much to be thankful for in this world. And, to be honest, I don't consider a Parkies diagnosis something to be taken too seriously. Take your meds, do your exercises, go to your doctor appointments, sure. But don't take Parkies, or yourself, too seriously. And, as a rule, try to keep the complaining down to a minimum. Constant bitching about your plight is not good for your mental health, and you may eventually notice none of your friends and family stop by to visit as much as they used to. But, on the other hand, rules are there to be broken. And that is also a technique I often employ to manage stress. Flout convention, says I. Break your own rule. Toss a hissy-fit. Toss a cell phone across the room. Kvetch pathetically about how hard you have it, lay on the floor and swear at whatever deity you happen to believe in. It's very therapeutic. I often can be found stomping around the house, apparently in some kind of crisis, justa yellin' ana' carryin' on like an x-rated Yosemite Sam. Get it out of your system, I say, hopefully before you go out in public. It might suck for anyone who has to live with you. But hey, anyone who has agreed to cohabitate with ME knew what they were getting into.

Anyway, back to Micheal J Fox. As I stated, we have never met. Nor have we discussed our feelings about Parkies. But as a famous person I think he is supposed to be ad hoc spokesman and advocate for the rest of us out there languishing under the yoke of muscle spasticity, tardive dyskinesia, mental fog, and painful falls down stairs (your symptoms may vary). There are a few things about 'Parkours' that he might have mentioned, being a big shot movie and TV star and all. But he never has called. I know, he's a busy guy. Plus, you know ' P-Diz' do take up quite a bit of your time. So, in any case, there are a few small things, in my humble experience, that I have learned about this nebulous, necrotic neuro-muscular nuisance called Parkinson's.

Where we are going there are no roads.

Yeah, well they're pretty handy around here bud. 'Parkin Lots' is a condition that depletes your little brain cells' ability to tell your other little body cells what to do. For me the worst part is that, sometimes my damn muscles just won't f****listen. They also get easily spooked and prone to panic. For example, often, when I come to the top of a set of stairs, or an icy walk, or a pile of laundry on the floor, I may think to my self, with my tiny brain, 'uh, better be careful. Don't wanna fall'. My body hears this and goes into a panic. "Ice?! Stairs?! FALL???!!! Jesus H Christ, you might have told us ahead of time! What do we do? I know. We'll just freeze up. Or cramp. Or shake. Or just fall over." Then the whole vestibular and proprioceptive system goes into lock down and there you go. Onto the floor." Or, maybe not. Sometimes my wacky muscles actually work just fine. It all depends on the dopamine. Or not. You never know. Or may not know until you really need to know, or would have liked to have known before you had approached the top of those icy stairs. In my case my body sometimes works fine and sometimes not. To a degree. I mean, since Parkies I definitely have constant difficulty getting around. Walking, lifting, driving, folding laundry, moving around, standing still; all can be difficult all the time. And 's'Parklies' IS a 'progressive' condition, meaning it's not likely to get better long run. But short run, on a given day I could be walking around, painting the floor, driving a lawn mower, or playing guitar. Sure, I may look like Herman Munster doing it, but, you know, I'm doing it. Then, sometimes predictably, or sometimes unexpectedly, I may have what I call a 'brown-out'. System just goes down. Muscle movement stiffens up or freezes up entirely. Body decides it would like to tip over instead of stand. For some reason even my blood pressure and pulse like to take a little break. Your results may vary. But the unfortunate upshot of all this neuromuscular rebellion is that it's frequently hard to get out and do stuff. Or to do stuff that requires a reliable, cooperative body that can be relied upon to do stuff like ride a bike, go up and down stairs, catch a ball, or even sit quietly in a chair and watch a damn movie or sip a cup of coffee for goodness sake. So for an active guy like me, I need to have a plan B.

Now certain activities I used to love, I just have decided to forgo entirely. Mountain biking, swimming laps at the Y, grouse hunting, for example, just aren't practical if it is for sure your body ain't up for it. There's only so many bumps, bruises, black eyes or broken collar bones I'm willing to take for the team. Other activities I have either amended so I can do them with at least the kinesthetic sense of a clumsy 5 year old, or just don't do them as much. Fly fishing, for example, used to be one of my great passions in life. Hiking in the woods, up a stream to find a scenic water fall, donning my waders, up to my armpits in icy water, casting a artificial Caddis fly lure that I tied myself to catch a fish. Sounds like a dream. Also for me a recipe for drowning, injurious falls, or a fish hook in their eye. And I don't really care for other types of fishing fun; like sitting in a boat, or chair, drinking a beer, drowning a worm, like an old retired man sitting on a bench at a suburban Florida town pier. Duffer much? Okay, maybe the beer I'd like. But, anyway, I just don't fish anymore. Or bird hunting, for example: You'd be surprised how unenthusiastic people are about walking in the woods with a guy with Parkies, carrying a loaded gun. And who could blame them (Hello, Dick Cheney...)? So, no more shootin' grouse...

So, this opens up a lot opportunity for other kinds of fun. Going out to eat, seeing bands, plays, sporting events, etc. But they all rely on roads to get you there. And generally some kind of adaptations to get in and out of a place more easily. Thanks to 1990's ADA, though, there's still cool stuff to do whether I am on foot, on crutches, with a walker or in a wheelchair. But I don't think we're gonna need your Delorean Micheal. Mostly I travel by roads. Have ride will travel.

If You're not living on the edge you're taking up too much space

Now when I was a teenager and young adult I was quite a devil may care kind of guy. I was very spontaneous and enthusiastic about getting myself into various manners of, how shall we say, high risk behavior. Having a life long diagnosis of ADHD probably enhanced this tendency. I was not so much into thinking things through as much as just jumping into them. Now this type of creative, outside the box, quick decision making can be an asset. But also can be a liability. Leading to things like relationship problems, brushes with law enforcement, poor grades, personal injury, totaled vehicles, and cervical spinal injury. High risk behavior was my very modus operandus back in the day, until a 'minor' C-4/C-5 cervical spinal injury at 27 slowed me down a bit. Now I thought I was a risk taker back then. And I guess I was. It was always climbing up a tower drunk, or speeding off on a motorcycle, or boat or jet ski or bulldozer. Or testing the limits of how alcohol, or other stuff, affected my ability to play late night pick up games of basketball, make it to work on time, maintain long term relationships, not drown, etc. You know. High risk behavior. Not necessarily unusual for the adolescent male. I thought myself as a metaphoric Evel Knieval, jumping rows of buses on the great 'motorcycle of life'. Soon enough, I would find myself under water, literally, reinacting my own 'Caesar's Palace's tragedy (see the tape). Yes big risk takers, young people. Fearless, they are. They look into the face of death and laugh. Not scared to lay it out there on the line. Well, now a days, as an adult with Parkies, I would say I laugh, derisively thinking back at my youthful hubris and bold life of action. I mean when you have the Parkies, and walking across the floor can be a challenge, other regular challenges can be a veritable bout to the death. The thing that gets most of us in the end with 'Parkemon's' is the 'serious fall'. I already have resigned myself that my end will come at the bottom of a long set of stairs, like NY Public Library, or the Pyramids or something, ending up like an accordian-shaped Wile E Coyote. Not to be too morbid but those odds are pretty good actually. I am told I have been to the ER 3 times this year. I have had 2 shoulder surgeries, 8 medical staples to the back of my skull, and a broken clavicle, just for starters this year. Now granted I am not the most reliable example. I tend to care more for my independence than my personal safety. But still, when you have zero ability to effectively control your misfiring body, any regular activity around the house, or out in the community can be a death defying act of defiance. A marble. An untied shoe. A throw rug. A gust of wind. Bright sunlight. All can be your undoing. So Evel Knieval jumping the Snake River Canyon or Chris Angel lighting himself on fire? Child's play. Tell you what, let's do an experiment. Right now I'm going to walk into the kitchen, without my walker. Or my crutches. I am going to fill a coffee cup with piping hot coffee. Then walk back into the living room with the hot coffee. AND a bagel in then other hand. Wish me luck. And for my next trick: I am going to --- TAKE A SHOWER! Quoting Chief Dan George in the movie Little Big Man, 'Come out and fight. It is a good day to die'.

You're doing it all wrong

Now it seems like I've been hitting you with a lot of information all at once. As I said, I have never been a big one for over-analysing, thanks to my ADHD. And keeping things simple is usually the best way. Plus, I haven't had my morning coffee yet. But let me mention a couple more things I have observed about 'Polkedots' Syndrome. No thanks to Micheal J Fox. I mean the last time we met, it was a fund raising gala in Rancho Cucamonga, California. And we were both distracted because were seated with Muhammed Ali, a childhood hero for both of us. So we never got a chance to talk much about actual Parkinson's. But if we had, I bet he would have mentioned:

I get by with a little from my Friends

As I said, I am an independent sort. I like to do things fo myself. I do not accept help easily. I am stubborn and I always tend to think I am right about everything, despite a staggering preponderance of historical evidence to the contrary. Despite that I have learned that it is much easier to make it through your day, stay safe, have more energy, maintain relations with your family and friends, if you let them do stuff for you. Plus it makes them happy. Face it. If you're reading this and think you may be interested in 'Parthenon's', know this: you can't do everything. In fact you'll be able to do a lot less than you used to. There's no cure for 'Parkle-toes' and there's not much your loved ones can do about that. But. They can help you get in and out of the car, or make you a sandwich. Or push you in your wheelchair, if you are not too stubborn to use one. It seems to help them. And you. Ask for help. Accept it. But, you know, don't be a pain in the ass about it. Of course, with all the empowerment to help you and cate for you, your loved ones will also be empowered to tell you how you are doing things all wrong. The more they care, the more bossy they can be. I am constantly impressed with how I made it more than 60 years without all their help and advice. And I am constantly shocked at the different ways I am doing things wrong from eating the wrong food, drinking too much wine, not doing my stretches and exercises, or neglecting to use my adaptive equipment. You might think I enjoy falling down all the time. If you were to ask my physical therapists anyway. But, they are only trying to help. I keep telling myself that. That also seems to help.

Well that's about it. As I said, it is best to keep it simple. Though it is much too late for me to make 'a long story short'. So I guess I will wrap up my thoughts on my good friend Micheal J Fox. And how he helped me in my Parkinsonian journey....Wait, I said '5' important facts....let me think....

Stay hydrated and everything will be all right

In conclusion, there is one thing that has always driven me crazy. My pet peeve. Namely, Hydration. Stay hydrated. Hydration is the key. Low blood pressure? High blood pressure? Drink more water. Depressed? Why not try water. There's never an amount of water that will ever be sufficient. Rest assured that you will never be able to drink enough water. But, last time I read, it was like 540 oz of water per day at minimum. And that doesn't count soda, beer, coffee, wine or anything enjoyable or tasty. Just drink more water, and

you'll be just fine 'they' all say. Bad news for an old guy with a prostate the size of a picnic ham that has to pee 65 times per day. But to be sure, I asked my doctor last check up, and she said indeed, drinking water is essential self-care. Then when I asked, she had to admit, that, yes, I was still going to have Parkinson's, and yes, I would eventually still die....from something.....probably from a fall down some stairs (okay, that one was mine). Then I asked her if I could play the piano if I had Parkinson's. She said, of course I could. Then I said, 'well that's weird, I could never play before.....'.Hiyoooo!

Bonus fact Micheal J Fox never told me: Soylent Green is people.

Bonus joke Micheal J Fox never told me: Why does Micheal J Fox makes the best milkshakes?

"He only uses the finest ingredients"!

(provisional edit pending final edit 10.19) (edit 1019 2pm)