(This is one in a series of articles on the effects of Parkinson's Disease... a list of the entire series can be found below in the right hand column.) I’ve never been much of one to become overly concerned with what the names of things are. As a science teacher, I am constantly presented with little glimpses and pieces of nature and asked: “what IS this?” And by asking, they expect something ecosystematically genus-specific like “Cytellus tridecemlineatus,” “Northern Hairy Nutscratcher,” or “Lilly Grady’s Upland Liverwort”. When something is given a name, it is given substance, validity and verification. It is set down upon its own piece of the enormous puzzle that nature study has been working on since inquiry began.
And that’s really the way it should be.
But I tend to disappoint my students by often replying: “why, that’s a little green frog”, or “it’s one of nature’s most efficient recyclers,”or “I don’t know, let’s google it.” If truth be told, I’m really more interested in how things work, who they compete with and how they are adapted. The names are simply a necessary evil that helps to keep us from becoming confused.
But with Parkinson’s disease, or “parkinsonism” it’s different. Parkinsonism is what is known as a “spectrum” disease, and like autism, dementia and mixing paint - it is broken into an infinite, incremental series of subsets that grade together – one into the other – like yellow into green. When you have Parkinson’s, or autism, or dementia, you exist somewhere along that spectrum. You are like the color greenish-purple: are you more green than purple?… and to what degree is purple blue and red? And what if you’re so far off the visible scale that you’re completely IN-visible? Where does that get you?
There are many symptoms of parkinsonism and no one, single, test. There is no one, single way to know if you have it, unlike say, cancer or malaria. Neurologists tend to make the diagnosis if at least three or four of the symptoms exist. These can come from an extensive list of problems that include unsteady gate, cramped handwriting, excessive fatigue, loss of smell, stiffness, shaky limbs, slow walking, overactive bladder, sexual dysfunction, soft voice and shuffling along like Frankenstein on pain-killers. To a greater or lesser extent, I have evidence of most all of these.
I recently went through a fairly exhaustive series of tests at a Neuropathy clinic. I met with a variety of medical professionals who culled my records from other doctors and subjected me to a series of tests where they stuck electronic needles in me and shot little bolts of electricity up and down my limbs. The conclusion was that I have mild neuropathy in my limbs and that the motor nerves are in much better shape than the sensory nerves.
Sensory nerves relay sensory input to the brain and motor nerves return the brain’s directions for a response. I can see now that part of my problem is that my body is responding correctly to incorrect input. I am essentially reacting to signals that really aren’t there. It could be the other way around, but in either case, a positive plus a negative equals a negative.
My problem is that, yes I do have some form of parkinsonism, and yes, I do have peripheral neuropathy. I know this; I can see it. But I don’t know where I fall along that spectrum and probably won’t until the symptoms become so obvious so as to narrow it down. By that time the condition will likely have much worsened, and I’ll already be well down the ultimate path that I’ll be shuffling. My exact limitations will be obvious. But until that happens I’m left in this sort of limbo… waiting for the other shoe to drop.
Neurologists are difficult people to track down. They are highly specialized and very much in demand. Therefore it is difficult to get an appointment with one without a long wait. I was never comfortable with my original neurologist and so I attempted to make an appointment with a specialist up in Hershey (PA). Only after taking three months to review my records were they able to – last March –make an appointment for me this coming November. It has taken me over a year to set up an appointment with a specialist, an appointment that still lies three months in the future. Meanwhile, I’m left here wondering and waiting for any additional thoughts on what I have and whatit’s called.
I want a name for it. Knowing how it works doesn’t really do much for me.
© 2012, Jeff L. Howe, all rights
This is not a scientific blind study with placebos and multiple subjects. It wasn’t sanctioned by a major university and performed by doctors and medical students, nor was it planned by committee and overseen by statisticians. In fact it involves only one person – me, and the data consists solely of my own observations and reactions based upon my considerable experience.
In other words, impartiality and objectivity are out the window as once again I enter the fray of fact vs. fiction.
In truth, it’s foolish for me to post something of this nature on the Internet, as all sorts of unfortunate consequences could result. But honestly, if you’ve followed me this far you realize that there’s much more at stake here than worrying about pin-head employers and social network monitors. Ultimately, the information here is interesting if not valuable, and should be posted somewhere. Why? Because there’s someone out there who may benefit from it. Someone out there has been wondering about this exact thing.
I have been diagnosed with Parkinson’s disease, or something akin to it. On my best days I don’t notice it. On my worse days I can barely walk. I’ve also had a close, intimate relationship with marijuana for forty years and counting. I’m a stoner, no doubt about it. The amount of pot that has passed through my various pipes, joints and bongs would certainly have to be measured in cubic yards… at least a couple I’d guess. But like millions of others, I am a productive stoner: I have a responsible job, have raised a daughter, make art and eat my vegetables.
I guess what I’m saying is – I have enough experience with it to recognize when things change. I know the essence of a marijuana high and I know all of the subtle variations around the edges. I can see what pot does to the Parkinson’s and what the Parkinson’s does to the pot.
* * *
“Huh?” is a basic staple in the lexicon of the stoner. It represents a mind gone elsewhere when the conversation is unexpectedly directed back to it. It’s not a circumstance exclusive to pot use, it happens to all of us. It’s just that pot opens the senses up to so many other things that the mind just naturally tends to wander. Until recently I could effectively stall when I spaced out, remaining calm on the outside while I grinded the gears trying to regain my train of thought. I always succeeded.
But lately (since I started taking the dopamine supplements) I find myself going straight to black and staying there without a clue as to what I was just talking about. Internally a panic sets in. It wasn’t ever like that before.
Marijuana intensifies the effect of the Parkinson’s. My feet get heavier, my gate gets sloppier, my voice slurs, my extremities tingle, and I become dumber and stupider. Now you may be saying: “Well that sounds like normal pot use to me,” but I tell you, it’s different. In a sense, it allows me to glimpse the road up ahead and how I’ll be with Parkinson’s in the future… maybe sooner, maybe later. It’s a preview of coming attractions and it’s not pretty. I become absolutely zombified. It takes“dumb and stupid" to a whole new level.
Whether the pot is stupefying my nerve receptors or interacting with the dopamine drug itself, I have no idea… I’m sure someone does. But the effect on my total body control is to effective turn me into a stumblebum: arms unswaying at my side, feet shuffling, body stumbling forward. The momentary hesitations become longer, the twitching more pronounced, my voice becomes even softer. PLUS, the munchies end up throwing my center of gravity way off and the stumbling gets worse.
The cure for this particular facet of my dilemma would seem to be obvious: stop smoking pot. But that doesn’t make the Parkinson’s go away, and it doesn’t account for the fact that I like the curious effect that a little buzz puts on the day. I’m sixty years old. It’s my life. I’ve got it down to a science… or at least I did until this Parkinson’s thing came along. Now I have to adjust my plans. Plans B through G have always been my strong suite.
Who knows? I may still seek a prescription for medicinal marijuana. I may still blissfully and shakily stumble off down the road to the future trailing a thin cloud of sticky blue-grey smoke. I may retreat to my keyboard and never be seen again. Or I may tire of the hassle and give it all up entirely. All of it. ALL of it.
It’s my life.
Huh?
Fortunately, realization came to me slowly rather than suddenly. There was no revealing moment of great suspense: no shocked faces, no crying loved ones, no wine glasses dropping suddenly to the floor. Instead it came to me in small increments of understanding: a problem, the possibility, Google searches, increasing probability, tests, diagnosis, more appointments...
Because this process took place over a period of a couple years, I was a little better able to work through it in my mind, having little glimpses of intermittent quiet between the stages in which to absorb it.
But it still occupied me twenty-four/seven. I was quiet a lot. I was sad. I pondered the situation and weighed the options. What does this mean? Do I spend the rest of my days pitifully shaking and staring off into tomorrow like Muhammad Ali? Will I lose my mind? What happens when the pills no longer work? How much time do I have? Is there nothing ahead of me but deterioration? Is there any up side? Maybe I don’t even have PD… maybe I have something else? Would that be better or worse?
And for days, weeks, months, that’s what you do. You try to look at it from all angles, hoping that you’ll stumble upon an angle that you haven’t’ thought of yet. You feel alternately happy and yet sorry for yourself: “Why me? Why now? Why didn’t this happen to the boss or Jerry Sandusky or Mohammar Ghadafy instead?” You write down all of the things that are changed… some forever. Priorities are rearranged, belongings are gotten rid of, money is marshaled and options are cast out infull view like a spilled bag of marbles. “… if I had it to do over again,
what would I do..?”
And then you realize that, in a way you DO have it to do over again. Apart from the Parkinson’s part, what happens next is largely a clean, open slate. Sure, life has always been an open slate but now the game has a name and it has a time limit. The world is no longer your oyster,
that’s a younger man’s game. But that’s OK too because you’ve had some oyster…not a lot, but enough from time to time to know what it tastes like if only in isolated little bits. You’ve been there, you’ve sampled it; on occasion you even rolled in it.
So how do you react? After the initial shock wears off and you finish the trying-to-make-lemonades-out-of-lemons bit, you finally muster up all of the “well this is a fucking, rotten, ill-timed, inconvenient, pathetic, unfortunate thing to happen” that you can find and then stew in it in self-pity. That one takes a while. But at some point you start sticking your head out the other side and looking for something positive. I’m still somewhat shocked but grateful that I’m finally at a point of having an understanding of the situation. Oh, don’t get me wrong, it’s STILL a shitty situation, but rather that fret over what I’ve not done in my life, I’m trying to get to work GETTING the things done that I can… as many as possible.
Look at it this way: You didn’t just die in a horrible automobile accident or get murdered walking down the street. You haven’t been told that you have terminal, inoperable cancer or that you are about to be eaten alive by vicious, flesh eating beetles. Granted those things might yet happen but at this point you only know that you HAVE PD. You probably have a few other things that are racing to kill you… we’re all dying of something. But at least you know what you have. You can make plans, put priorities in order.
I’ll tell you one thing, this focuses my priorities. I’m no longer pondering old age and wondering how I’ll ever save some money to die on. I’m now more inclined to focus my energy on hustling to get my art out. It will outlive me.
The biggest realization for me is that this, right now, this time right here is probably about as good as it’s gonna get. At least physically, it’s all downhill from here. All of my life I’ve had the trusted fall back fantasy of Someday, that rosy in-the-future place where I’m rich and famous and content, living on a tidy farm Up Northalong the Betsie River. But now I know that, even should those fantasies finally come true - I’ll be nothing but an ever crippling old man to enjoy them.
To live with this Parkinson’s you need to realize:
1. You won’t be getting any better.
2. You don’t have to go downhill unwillingly.
3. It may be the end of a lifestyle but it’s not the end of your life.
Now get back to your corner and resume your sulking.
© 2012, Jeff L. Howe, all rights.
“Keep the juices moving by jangling around gently as you walk.”
–Satchel Paige
The act of walking is so basic, so elemental, so essentially human that we take it for granted. We don’t analyze it. We don’t think about it. We just put one foot in front of the other and go wherever we want. From the time we take our first steps as a child, our attention is focused ahead to where we are going and where we want to be – we are goal driven, our feet are just another link in the chain of command that takes us from one place to another. Our feet are truly the foot soldiers of our life.
I have always been a walker/runner. I’ve had no choice: life would call me out, and out the door I would flee on well-muscled legs and bottomless lungs. In my prime I ran marathons and chewed up the rocky trails of Mt. Tamalpais for sport. I would spring from one step to the next with toes spread and relaxed, pushing into the earth like a panther, grasping hold of the ground and pushing it behind me. Each fleet bound led to another, and then another, and then another, in an indistinguishable series of coordinated movements. These motions were fluid and automatic. Together they blended effortlessly together as either walking - which was much too slow, but ruthlessly efficient – or running which was easy, fluid and natural. Moving forward in life was mindless, liberating, and free.
But with the effects of Parkinson’s, everything has changed. Now, especially when I’m tired, I scuffle and shuffle around like an old man in his pajamas and slippers. I feel hunched forward, dragging my heels, wearing down the soles of my shoes at an unprecedented rate. My legs are no longer springs; they have become stiff and inflexible. (The better choice of word might be “flex-less”.) My toes, especially those of my left foot, mindlessly curl into a “fist” which I am forever relaxing. Walking used to be easy money, but now it has become a game of chance… I’m never exactly sure how, or where, my foot is going to come down. When this happens, walking goes from a controlled transfer of energy to the barely controlled ricochet of a drunken sailor; an almost-but-never-quite-in-control battle for balance.
I’m not a cripple, I’m still reasonably light on my feet. I can still fake out a first grader and jog for short periods of time. I walk a couple of miles every day out of necessity, but my focus is no longer on where I’m going because I’m no longer convinced that I’m automatically going to get there. Instead, my concentration has shifted to the process of walking itself. I must concentrate on what my legs and feet are doing at all times. Each individual step has become its own entity - a separate moment. With each step I must stop and remind myself to be more mindful – less I become mindless again.
When I find myself becoming mindless, I snap to and try to alter my step. I mutter “just walk!” to myself and aggressively step forward – taking longer strides and seeking to come down firmly on my heal. But this only serves to throw me off balance and further slow me down. Despite trying to walk consciously and willfully, I soon revert back to my shuffling gait which is again awkward and inefficient. I’m just not transferring weight forward efficiently. I am wasting and losing too much energy driving my momentum into the ground and wearing down the heals of my shoes. Whereas I once used to sit on my own hips like a tourist on a bus, watching the scenery go by as I walked, I now miss the scenery because I’m out behind, pushing the damn bus.
When I trace it, the problem always seems to begin and end in my lower back. There is a weakness there that is inhibiting my stride. Since I’ve had problems with my lower back for years, I hold out hope that I DON’T have PD… that I have something else. But even if that is the case I’m still left with this awkward, heel-grinding gate.
Since I began this journal I’ve been hearing from people who have PD. One of the best descriptions that I’ve heard is that it’s like trying to walk in sand. Someone else said it’s like your shoes weigh ten pounds apiece.
To me it feels like one of the scenes from the movie “Animal House”. Towards the end of that film there’s a scene where the geeky fraternity brother hijacks the marching band by masquerading as the drum major and leads the entire parade down a dead-end alley. He walks with a distinctly herky-jerky, falling forward motion. I don’t know what I look like to others, but I feel like I walk like the geek.
And the blind alley part? I try not to think about it.
© 2012, Jeff L. Howe, all rights
I recall remarking to one of my classes, as I was handing out papers a couple of years ago, that one of the aggravating things about getting old is trying to separate one page from the next. It doesn’t seem like a hard thing – separating sheets of paper - but for some reason, at some fairly recent point, it became an increasingly difficult thing to do. It’s not that I can’t see them or feel them; it’s not that I can’t get my fingers between them. It’s just that little hesitation moment as I reach for a sheet, when I can’t convince my fingers to do the obvious.
It’s very frustrating.
But it’s not just handing out papers. How many times in my life have I threaded belt loops or tucked in the back of my shirt? Hundred sof thousands? Bazillions? Yet now, there is again this momentary hesitation – a nanomoment - where my brain and my hands can’t agree and they both stand there looking at each other like two infielders who have just let an
easy pop-fly fall between them. (Fortunately, I’ve tied my shoes so many times in my life that that action is almost embedded in my DNA.)
With the exception of my problems walking (which I will detail in a coming post), the difficulties with little motor skill activities are the most aggravating. Brushing my teeth, fumbling for my bus pass, putting a key in a lock, zipping a heavy zipper on a winter coat – all of these things can be minor adventures, especially when I’m tired.
Don’t get me wrong. I’m not bumbling and fumbling my way through life… I’m still a pretty young and nimble guy. In fact, to watch me I doubt that you’d know that I’m having any problems at all. I don’t think it’s obvious to the outside observer. But to the inside observer – to ME – it is painfully obvious. These nanomoment hesitations are like hours and they are as frustrating as stuttering during an interview.
So for now I mask them. I take my time. I laugh it off to my students as a joke. I blame it on “getting old”. But deep inside it’s not funny at all. I fear it’s a harbinger. It’s the rattling rails of a distant train, the down-draft of an approaching storm, the smell of smoke, the first hard frost. I’ve always been an athlete and it’s the first time in my life that I’ve confronted the reality of not physically being able to do something.
Its nanomoments slipping away. And all I can do is stand here fumbling with a stack of papers.
I’ve known for a year that something just wasn’t right, although in retrospect I can trace it back another four or five years. I first began to notice it as a walking problem – I couldn’t keep from shuffling and scuffing my feet. Walking, which had always been such a natural activity, increasingly became a game of chance: I was never sure exactly where my feet would come down.
Daily life also began to change in subtle but noticeable ways. I sometimes found that I had to coax my muscles into performing simple tasks that they normally did automatically: things like brushing my teeth, tucking in my shirt, or getting out of the car. I began to have trouble maneuvering in the shower or trying to roll over in bed. And there was this indefinable, but ever-present gap, a pause, a hesitance as if my body was stalling while my brain struggled to figure out what to do next.
I finally sought medical help. My family doctor shared my concern and sent me to an orthopedic specialist, who sent me to a neurologist, who stuck needles into my arms and legs and ran electric current through them. (I discovered that I broadcast in FM.) Blood tests were ordered, I had an MRI and visited a physical therapist. The verdict finally came down: peripheral neuropathy (nerve deterioration in my limbs) and Idiopathic Parkinsonism, or at least the symptoms thereof.
There is no single test for it. It is an assortment of symptoms that slowly manifest themselves: tremors, fatigue, problems walking, poor handwriting, softening of the voice, stiffness. Like autism, it seems to be a spectrum, a continuum. In my case, it could eventually lead to dementia – the thing that just killed my mother. Because she had it, my chances of also getting it increase dramatically.
As I understand it, Parkinson’s is a slow demise of the neuromuscular system from causes unknown, or at least poorly understood. A part of the brain stops producing the amino acid dopamine, thus inhibiting the nervous system’s ability to transmit signals. I have been issued dopamine pills which I take three times daily to supplement my system. Although I haven’t detected much of a change either way, my neurologist assures me that they will allow me to manage the symptoms for years to come. The problem is – sooner or later the pill regimen exhausts itself, and the effect goes away. At this point the sufferer dives into much deeper levels of the either drug-taking or the disease itself. The person begins to disappear down a tunnel.
I am often tired, unsteady, stiff and sore… but I’m also old, so there goes that excuse. Walking uphill is awkward because my body feels hunched forward and my feet seem to drive clumsily into the pavement before they should. But walking downhill is quite the opposite because my feet are flung out and down in front of me. It is rather liberating. Running, (or at least jogging) still feels pretty natural and if I wasn’t so out of shape - and if I could get beyond walking - I think I could run.
On a good day, which is most days, I can still pound the fuzz off a tennis ball and hike along the river with the dog. Other than the walking and occasional rogue twitches, I feel great. I have no desire to become a blithering Muhammed Ali, or a twitching, stammering Michael J. Fox. I hope to have the gumption to never let it go that far. In fact, chances remain that I may not have it at all… maybe someday I’ll go “whoops, never mind” and strike this blog from cyberspace.
But for now I’m getting used to living with it. It’s been a slap in the face with cold water that has been a bit refreshing in a way. As the English poet Samuel Johnson once remarked: “nothing focuses the mind like a hanging”. And as Mark Twain has been attributed to have added: “especially your own.”
But then, Twain gets a lot of credit for things he never said.
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