“I urge you to please notice when you are happy, and exclaim or murmur or think at some point, ‘If this isn’t nice, I don’t know what is.'”  – Kurt Vonnegut

I’ve done enough whining on this site about the times when Parkinson’s is getting the best of me that it would be wrong not to write about the past week to week and a half. The simple fact is, that for some reason I don’t fully understand, over that timeframe, I’ve felt great.  Indescribably great.  Great as in how good one can feel when compared to how crummy I felt.  Great as in I’ve actually reduced taking my meds from once every three and a half to four hours to once every nine to ten hours. It’s been literally years since I’ve felt this good.  And while my voice and handwriting are both bordering on being illegible, those seem like minor complaints.

The balance problems that were not only getting me but actually literally knocking me down have largely vanished. Where I was prone to falling or crashing into walls or doorways or furniture multiple times per day, I now move normally and freely about 90% of the time. I’m sleeping six to seven hours a night, and while I still sometimes take a quick nap in the late morning (I’m convinced because  of the cumulative side effect of my morning cocktail of six different meds), I’m awake and alert the rest of the day, and avoid the afternoon naps I’d been taking.  I never imagined I’d feel this good again.  Ever.

Why am I feeling so good?  Well, I’m not sure. Here are my guesses:

  • On the cardiac front, I’m still watching what I eat, and exercising an hour to an hour and a half every day. I recently had my annual physical with my doctor, and the numbers are very good:
    • Weight: 212 pounds (down from 235 before my bypass surgery)
    • Total cholesterol: 120 (down from 230)
    • LDL (“bad” cholesterol): 48 (target:  < 100)
    • HDL (“good” cholesterol): 54 (target:  > 40, ideal > 60 – still have  a little work to do here!)
    • Triglycerides: 88 (<  100 optimal)

While exercise and diet have been big contributors to my improved numbers, my nightly dose of Lipitor has been just as big a factor.

Heart disease, while scary and deadly, has been pretty easy to prevent.  Just eat right, exercise, and take my Lipitor, and my numbers go down. These have been tried and proven methods, and the numbers provide an excellent indicator of progress.

Unfortunately, for Parkinson’s, it’s not as black and white. There are no proven biomarkers to determine how likely one is to get Parkinson’s, and once diagnosed, it’s known as a “snowflake” disease, as in everybody’s instance of the disease is a unique combination of symptoms and side effects that progress and evolve and react to treatments in varying and often times unpredictable ways. Treatment tends to be reactive and is dependent upon symptoms and is often trial and error.

So why am I at this point, eleven years into my diagnosis, suddenly feeling so good?  I have no idea.  What my guess is, is that after my recent appointment with my Movement Disorders Specialist (MDS), Dr. Z., we’ve arrived at a combination of meds, Deep Brain Stimulator settings, exercise, and physical therapy regime that are perfect for where I’m at in terms of the disease’s progression and how my unique instance is behaving at this time.  Specifically, Dr. Z added an additional med to my daily cocktail, which has enabled me to cut back on the amount of Carbidopa / Levodopa I consume.

I do know that I am incredibly lucky to be treated by a MDS, especially one as gifted as Dr. Z, at one of the premiere institutions in the country, Northwestern Memorial in Chicago. Because I treat there, I have access to resources that sadly aren’t available to too many people who are suffering much more than I’ve suffered.

The other thing I know is that I’m better off appreciating these days when I’m feeling so well instead of wasting time trying to figure out why. I don’t know when this “honeymoon” period will end, I just know that it will.  It might end tomorrow, next week, next month.

Until it does, all I can say is, “If this isn’t nice, I don’t know what is.”


A few years ago, when I started writing about my experience with Parkinson’s disease, I decided that if I was going to do it, I’d try to do it as honestly as possible, warts and all.  That is easier said than done.  Try as one might, it’s impossible to separate the events from the emotions, and we all know that emotions are deathtraps for objectivity.

So when something happens like the events of last Sunday morning, the natural inclination is to hide the embarrassment and humiliation and not write about it.  I’ve always been pretty even keeled, without much of a temper, and able to keep my emotions under control.  Losing my senses even temporarily is unfamiliar territory; a source of both shame and mystery. So I’ll try my best to explain.

It was Sunday morning, the day after opening day of the gun deer hunting season in Wisconsin.  My brother-in-law Doug and my son Jon and I had driven from my cabin to a butcher’s shop in a nearby small town to get Doug’s deer processed.

I was helping Doug lift his deer out of the back of my truck.  He had the front legs and I had the back legs and as we pulled the carcass out and away from the truck, I felt my balance going, and I let go of the deer and fell hard on my right shoulder on the cement floor.  I struggled for a second to regain my balance, got back up on my two feet, and immediately fell again, at the exact same angle, my right shoulder pounding into the cement.   It was the Parkinson’s balance dance I’ve become all too familiar with.  As I tried to get up again, the butcher cracked, “What, did that guy have brandy for breakfast?”  And then I lost my mind.  I don’t know where I was, but I was gone, the bright morning sunlight igniting pure white rage.  I started swearing and stumbled into my truck and started looking for targets.  I wanted to smash my fist through something; the best I could muster was throwing whatever I could find.  There was an open bag of pretzels in my truck, I grabbed it and hurled it against the windshield, pretzels flying everywhere.  At this point the contents of my wool hunting pants front pocket emptied out onto the floor, and I threw the little bag of  hand warmer, and then I grabbed my brand new hunting knife and threw that, too, unaware in my blind anger that it had opened up and that I had grabbed it by the blade.  I didn’t even notice the blood that sprayed across the inside of the windshield and stained my door.  Doug and Jon had at some point gotten into the truck and were yelling at me to calm down as I put the accelerator to the floor and peeled out of the driveway into the street, trying to articulate my rage by screaming out profanities that only lodged in my throat and further fueled my anger.  It came from deep down inside me, and as it intensified, it became more real and more honest. Fuck that asshole for implying I was drunk, fuck the humiliation of falling yet again, fuck everything that I used to be that I’m not anymore, fuck the narrow minded assholes who don’t get it, who don’t understand all that I’ve lost, fuck the past for reminding me, fuck the future for what I will become, fuck the cement floor of the butcher’s garage, fuck the early morning sunlight, fuck you, fuck me.

Somehow Jon and Doug calmed me down enough to stop the truck and let Jon drive. I got out and switched places with Jon, and as I took my seat on the passenger side, Doug, from the back seat, handed me a brown glove and said, “Here, wrap this around your finger.”  Then, turning to Jon, he said, “He’s gonna need stitches.  Do you know where the nearest emergency room is?”  At that point, I unwrapped the glove from around my right index finger and saw how deeply I had cut it for the first time, and I saw the drops of my blood sprayed across the windshield, and I started coming back.

Jon stopped at a nearby gas station and ran in and bought some gauze and band-aids.  He came back out and neatly and patiently wrapped my finger.  I was still only about half aware of my surroundings; it still hadn’t registered, what had happened, as Jon pulled out on Highway 8 and started heading east.

Then in the sudden quiet of the truck, it hit me, and I could almost see it all unfold again in my mind’s eye, me falling on the cement, starting my tirade, throwing the bag of pretzels, and grabbing my opened knife and throwing it.  Without warning, I felt pressure behind my face and I burst into tears, crying.   I fought hard and stopped the tears, only for them to build up and burst again, and I sat there, in the passenger seat next to my son, fighting the tears and losing, ashamed and embarrassed by the scene I’d created.

Finally, enough time and distance elapsed for me to regain control of myself.  I apologized to Doug and Jon, my only explanation being that I snapped like I had never snapped before, and that I didn’t know why.  Doug was great, completely non-judgmental, explaining how he’d lost control a couple of times in the past, and that he understood.  I’ve always thought of Doug as a good guy with a good heart, but I realize now that I’ve underestimated my brother-in-law, that there is a depth of soul that I was unaware of.  I can’t thank him enough for his kindness and his support and his understanding.

We got to the emergency room and after I finished at the front desk, I sat down in the waiting room next to Jon.  Doug went to get something out of the truck, and it was just Jon and I, my firstborn son and his father.  We sat there, and quietly talked, exactly about what I don’t remember, but he was calm and steady and then I was, too.  I realized at some point our roles had reversed, and he was taking care of me.  The amazing thing is the comfort I took from this, from the knowledge that Jon was there for me.   My son is a strong and capable and sensitive man, and I couldn’t be prouder of him.

They waited for me as I went in and the doctor stitched me up, eight stitches.  He ordered an x-ray of my finger to make sure I hadn’t cut it to the bone. My shame and humiliation at my temper tantrum grew when, in the same room behind a curtain next to me, as I waited, the doctor treated a woman with cardiac problems, who was having trouble getting warm after hunting in the sub zero morning.  The x-ray came back indicating the bone hadn’t been damaged.  All told, a minor medical event caused by a major emotional malfunction.

The rest of the day went by without incident, the three of us watching the Packer game and Jon returning to his home in St. Paul.  My finger was wrapped too heavily to pull a trigger, so my hunting was done, at least for a day or two.  But that’s okay; to be honest, hunting isn’t all that important to me anymore.

So what did I learn?  I learned that as old and wise as I am, I’m still capable of behaving like a spoiled two year old, throwing things and pitching a hissy-fit when things don’t go my way.  I also learned that I’ve got more bottled up inside than I’d care to admit, and that I am capable of exploding.  I’ll have to keep an eye on that – it’s good to know,

Most importantly, I learned that I am not alone, that I am surrounded by kind and exceptional people who genuinely care about me, even when I behave like a raging lunatic.  This is the lesson that I am most likely to forget first, but it remains the most important.

I Am Smoke

(I should probably explain – this is an attempt to describe a dream I had after a frustrating day with Parkinson’s.  In the dream I was literally smoke from a fire, moving freely through the air.  I’ve had a few of these dreams now, usually on my more rigid days, and they always feel wonderful)

I wake in the diminishing daylight and I am smoke, rising from red burning embers in a campfire in an open field on the top of a high ridge.  I rise higher and higher above the red and blue flames and the white hot coals, leaving the warmth of the fire and floating on the breeze, feeling the chill of the late afternoon air, above and over the trees, carried on the breeze, dissolving into the wind, until I melt into and become the wind, making the leaves on the trees tremble and shake.   I move out past the ridge and over the river, pushing small blue lines that silently glide across the water.  The trees that line the water’s edge are leaning and bowing in silent deference to me.   I lift dead leaves from the ground and breathe life into them, making them dance in the cool air.  I make flags wave and I whisper through pine trees.    I am silence and grace, I am young and old, I am familiar and comforting, and threatening and foreboding.  I am life and I am death.  I am the sum of my contradictions.

I find her, working in her garden, and I wrap myself around her.  She bundles her jacket tight around her shoulders as I move through her hair, lifting and caressing it, until she turns around, and I caress her cheeks and I fill her lungs. I brush her skin and make goose bumps rise.  I taste her and she tastes me, and she becomes fire, ignited by my breath, and I am the smoke she exhales from her red and blue flames.

The PD Kid Is Not Alone

I attended the 4th annual Parkinson’s Symposium, sponsored by Froedtert Hospital, today.  It was held in a Waukesha hotel’s conference center.   As I pulled into the parking lot, I wasn’t sure I was in the right location, until I saw the slow migration of men and women doing the PD shuffle from their parked cars to the hotel entrance.  I knew immediately that I was with “my people”, and it occurred to me, as I entered and waited in the long registration line, that it would be a mean but funny joke to yell “fire” in this crowd.  

I’ve been to a few of these now, and find the speakers to almost always be very interesting, and today’s symposium was no exception.   As interesting as it is to hear the scholarly presentations from dedicated professionals, I find the real value in these things is the opportunity to interact with other patients and learn about their experiences.  Today, at my table, I was, as is often the case, the youngest person (at almost 53 years of age, it may be the last demographic where I am considered a “kid”).  What was different about today’s table is that the two men who sat to my left had both had Deep Brain Stimulation (DBS) surgery.   This gave me a rare opportunity to trade notes with others who have been through this surreal process.  We all agreed that the pre-op process of clamping the metal frame to the head was possibly the worst part, and they were able to corroborate my experience of, as they screwed the spikes into my head that would hold the frame in place, being able to feel and hear the breaking of skull fragments.   Then there’s the part where they install the electrodes in your brain – while you are awake!   We traded memories of this, like old soldiers trading war stories, with one of the guys telling the scary story of how he almost died from the anesthesia administered to him afterwards, and that in the rush to save him (he was clinically dead for two minutes), they accidently dislodged the electrodes they had just put in, resulting in the surgery having to be re-done.  We traded notes on our neuro-transmitters and their operation and maintenance.  We discussed the differences between my one battery and their two battery systems like we were discussing the differences between six and eight cylinder car engines.

While we were out on break, I ran into a face that looked vaguely familiar.  Looking at his name tag, I recognized him as a nuclear engineer I used to work with at the Zion Nuclear Power Plant, more than 15 years ago.   I went up to him and we talked for a while, with him finally confessing that he didn’t remember me.  That was okay, as it has been a long time – we had a nice chat none the less.  He is about the same age as me, and it turns out he was diagnosed a couple of years before I was, and that he too has had the DBS surgery.  He is now teaching engineering at the Milwaukee School of Engineering.  Like me, his handwriting has become completely illegible, and like me, he is dealing with frequent and debilitating periods of daytime fatigue.  He is wrestling with how much longer he can keep working, just like I had been for the past couple of years before finally throwing in the towel in late March of this year.

We talked for a while in the hallway, until the program began again and it was time to return to our tables.  I said it was nice meeting him again and that I wish it were under different circumstances.  We both agreed that things aren’t as bad as they could be and that there are a lot of worse things we could be afflicted with. 

This is one of the things I’ve learned from attending these conferences.  We PD patients are, for the most part, a pretty resilient group.  When we talk, there isn’t a lot of whining or complaining about our fate – there is more the comparing of notes.   Recognizing, for example, that nearly every PD patient I’ve met has experienced to some degree the same issues with sleep disturbances and daytime fatigue, is somehow very reassuring for me.  I think it is because having Parkinson’s is such an intimate experience – the disease is much more than the impaired motor functions that result in tremors or the shuffling walk or the slurred speech – these are, to borrow a phrase from a Chicago symposium I attended last year, just the tip of the iceberg, the part that’s visible above the water’s surface.  Like an iceberg, about 70% of the Parkinson’s experience lies beneath the surface, and is known only to the patient.   This results in one of the worst symptoms of Parkinson’s – the feeling of isolation.   If for no other reason, the symposiums and conferences and support groups are worth attending for the simple knowledge that you are not alone.

So thanks to all the professionals who put together these events and donate so much of their time, talent and knowledge.   Thanks for your passion and commitment to our rag-tag community of the slow and unsteady.

DBS – Part One

(I am considering using this exceprt as the revised opening to the memoir I’ve written – the overall gist of which is to describe what life is like for an early onset Parkinson’s disease patient – any feedback would be appreciated)

January 14, 2010:  I wake up and I am half sitting in my hospital bed in a large room.  The heavy metallic frame that was screwed into my head earlier in the morning has been attached and locked into some larger metal base that I can’t see.    I can hear the usual blips and beeps of hospital equipment, plus the low hum of static.  It’s chilly, and there are people in scrubs milling about.  One of them notices I am awake, and the next thing I know my neurosurgeon, Dr. Rosenow, is in front of me.  He tells me the static I hear is in fact my brain talking, the impulses it creates converted to audio, and that they’ll be listening to it and talking to me as they install the first set of electrodes in my brain.  The fact that my brain waves sound like static is somehow not surprising to me.

As I sit there, awake with neurosurgeons literally in my head, listening to the white noise my brain is broadcasting, I look around the room, at least the portion of it I can see through my peripheral vision, as the bracket my head is mounted to prevents me from turning.  I see to my left and right a curtained off area that goes in a half circle around me, there is a man, a neurosurgeon I’ve never met before, sitting to my immediate right, and Dr Rosenow is behind me now, talking to me, apparently on the other side of the curtain.   He explains that they are now to the part of the procedure where, before they install the first electrode, they have to make sure they are in the right spot, and that they’ll be “listening” to my brain.  For the next hour or two, Dr. Rosenow, for the most part unseen because, just like the wizard of Oz, he does most of his work from behind the curtain, explores my brain by doing whatever the heck he is doing back there.  This must involve turning a dial of some sort, because sometimes, I can hear the static gradually getting louder, and then I feel my right leg and foot and then hand start to tremble and shake, slowly and gradually at first, then more and more rapidly and violently, until he turns the dial down and the shaking diminishes.  The other neurosurgeon takes my arm and bends it, and when he feels the Parkinson’s cog-wheel effect, they listen for the resulting quick change in the static to know they are recording the symptom; as they go on, I learn how to listen for these slight changes in the static patterns that indicate whether they are in the right spot in my brain.

This is all part one of the two part procedure known as Deep Brain Stimulation, or DBS.  When part two is complete, two weeks later, I will have two electrodes installed in my brain; they will be connected by wires which run from my brain down my neck to the right side of my chest where a neuro-transmitter will be installed.  Once programmed and turned on, the neuro-transmitter will send signals to my brain that will drown out the noise caused by Parkinson’s disease, the noise that is largely responsible for my symptoms of rigidity and stiffness.   DBS treats the symptoms of those Parkinson’s patients who are in an advanced state of the disease yet still young and healthy enough to lead an active life.  For these patients, it is viewed as a second chance, an opportunity to regain capabilities that the disease had stolen, and to retain a level of independence and freedom required to carry on a normal life.   It is not a cure for the disease, and does not prolong the inevitable outcome; rather, it treats the symptoms for a period of time.  I’d been eagerly anticipating this second chance for the past six months, as various complications delayed its start, and between work and Parkinson’s, life was declining in an increasingly repetitive exercise in fatigue and discomfort.  I felt like I was gradually fading away.