Stories

Dave's Story   Revised

Sentencing

Diagnosed at 46

My sentencing took place on March 25, 2005 a Friday, in a neurologist’s office in Lake Geneva, Wisconsin, when it was made official, as Dr. Buoyini, in his Peter Sellers as Dr. Strangelove accent, told us that all the test results suggested a diagnosis of Parkinsonism, most likely Parkinson’s disease. It was one of those dream-like moments where time seemed held suspended and left the words hanging motionless in the air, without impact, without surprise, without meaning, as I looked around the room at the blood pressure instruments, the mirrors, the exam table, Dr. Buoyini, in his white lab coat, seated across the room and to my left, and finally to my right, where my wife sat, tears silently streaming down her face. This took me by complete surprise, and still in that split moment where everything had slowed down and was seemingly standing still, I asked myself, why is she crying, and then time kicked back into gear, rushing forward and on its way picking up reality as a passenger, shattering the dream trance, and we sat there, the five of us, the neurologist, my wife, time, reality and myself. I remember saying thank you to Dr Bouyini and shaking his hand.

I was 46 years old when I officially became a “Parkie”. My diagnosis of having Parkinson’s disease ended about a two month series of tests and exams to figure out what if anything was wrong with me that began with a visit to my family physician for a routine physical in the previous January. I was a typical overweight and out of shape middle aged man (I’m also bald – not that that has anything to do with anything, but you may as well get the complete picture now), and was motivated to make the appointment by fears of high cholesterol and heart disease and prostate problems. Any concerns I had going in to the physical centered on the need for that most dreaded of all procedures, the rectal exam. Parkinson’s disease wasn’t even remotely on my mind at the time. Dr. G. was new, the latest in what had become a revolving door of physicians at the practice.

He began the physical, doing the stethoscope, the eyes, ears and nose, talking to me and asking me questions the whole time. He asked me if I had any concerns about my health, and I told him I was worried about my cholesterol, and oh, by the way, I’ve noticed in the past three or four months I occasionally have an involuntary twitch with my index and middle finger on my left hand. He nodded, and said “Essential tremor, in all likelihood.” Then out came the rubber gloves and the dreaded procedure, and suffice to say, Dr. G. was thorough and would take no short cuts. No perfunctory exam here. He talked to me throughout, told me he knew this was uncomfortable, then added, lightheartedly, “relax.” Relax? For a moment, I felt like the wooden dummy in a twisted ventriloquist’s act.

Afterwards, as I got dressed, the late afternoon sun crept through the blinds of the examining room much the same way it creeps through the blinds of a cheap motel room. Across the room, the doctor, who for one split second I imagined was sitting back smoking a cigarette, watched, when he said, “Has your wife said anything about you moving slowly? Or having a blank expression on your face?”

“No”, I said, thinking, of course I have a blank expression and am moving slowly after what just happened in this office!

“It’s probably nothing”, he said. “It’s just that these things along with the tremor in your fingers are sometimes an indication of Parkinson’s disease.” He said it was likely nothing to worry about, but he wanted to make an appointment with me and my wife in a couple of weeks and get her perspective.
I left thinking less about the tremor and the Parkinson’s possibility than being relieved that I had survived the exam and wouldn’t have to go through that for at least another year. I mentioned the follow up appointment to Deb and we talked a bit about it but neither one of us was real concerned. 

At some point in the next day or two, with the physical still on my mind, I performed a simple test: I rapidly drummed the three middle fingers on my right hand on the table where I was sitting, starting with my fourth finger, then my middle finger, then my index finger, just like, being the famous life-long fidgeter my Mother used to complain I was, I had done thousands of times before. After doing this a few times, I tried to repeat the sequence with my left hand, and much to my surprise, I couldn’t do it – the three fingers weakly made contact with the table, and the fourth and middle finger were unable to move independently from each other, and the index finger spasmodically went up and down twice before the other two fingers were able to make contact once with the table. I showed this to my wife, and we agreed that maybe there’s something to this Parkinson’s stuff. Then came the first appointment with the neurologist, Dr. Bouyini, followed by the series of tests to rule out Multiple Sclerosis, Lou Gehrig’s disease and even Lyme disease.

That was seven years ago, and looking back at a couple of other events, I know now that I had the disease at least two years prior to my diagnosis. My instance of PD is of the rigidity variety; although I occasionally have some tremors, they aren’t too pronounced, and my primary symptom during “off” periods is a rigor-mortis like stiffness that spreads through my body until my Stalevo (the form of levadopa/carbidopa I take) kicks in. In January 2010, I underwent Deep Brain Stimulation surgery, and it has helped prolong the “on” periods, the time between taking my meds, and has helped me sleep much better at night. There have been some side effects to the surgery, impacting my speech and my handwriting, and I still experience periods of intense fatigue during the day, but overall I am doing much better since the surgery than I was before. 

Sometime after being diagnosed I started experiencing frequent and intense insomnia, awake for several hours during the night. Eventually, with nothing else to do, I started writing during these episodes, writing about what I was experiencing, what I had been dreaming about, whatever was on my mind, and now, all these years later, I haven’t quit. Writing has provided for me a tremendous outlet for dealing not just with my disease but also all the challenges and rewards that are a part of being middle aged. I have combined many of these writings into a book-length memoir that I am still shopping around in search of an agent. I am also working on a novel, and have a website (djgourdoux.wordpress.com) where I post whatever is on my mind at the time.

14 Comments

IT WAS INSPIRING.

mir golbaz, Apr 1, 2012

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Write as much you can, that will at least keep you strong.

Asrar

Asrar, May 5, 2012

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how long did your fingers twitch? was it violent, fast and constant? or was a single twitch? iam 23 years old and scared about YOPD. please email me kevinnash87@hotmail.com

kev, Jun 2, 2012

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I, too, used writing as my salvation. I also have a blog: http://indigobuntinggurl.blogspot.com/

Keep writing, use whatever voice you can, to get the word out to public and governmental policies. This disease takes our lives away minute by minute; keep pushing, make that wheel squeak...

And keep living strong, living as well as you can.

Good luck finding an agent :).

Cat

Cat, Jun 3, 2012

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Hi, Cat ... sorry it took so long to respond,I've been out of pocket. I visited your blog, you write very well. I will be a regular reader! As for me, I am at work on a novel that has nothing to do with PD. I find it is good for me to have a life other than as a Parky - although I recognize that I am forever more going to be a Parky - it's just that I like to think I am still more than that.

Dave, Jun 18, 2012

I'm 20 and I have just noticed in the past 3 days that my middle finger on my left hand has started to twitch .. I'm so confused and I try n stop it but its been doing this often yesterday. What should I do?

Stacey, May 3, 2013

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Hi Stacey,

The onset of tremor can happen for a few different reasons - some tremors are caused by neurological disorders such as Parkinson's disease, but tremor can also be caused by other factors such as stress, an overactive thyroid, or a reaction to certain medications, among others. The important thing is to try not to worry just yet, there may be a relatively simple solution to alleviate your tremor. Be sure to see your doctor right away to have it checked out. If your doctor refers you to a neurologist, contact your local APDA Information & Referral Center for a referral in your area: http://www.apdaparkinson.org/information-referral-centers/

APDA National Young Onset Center, May 3, 2013

DAVE, THAT WAS A GREAT STORY. I TOO HAVE THE INSONMIA, BUT ALSO THE RBD AND SOMNAMBULISM...THAT IS GREAT, THE WAY YOU UTILIZE THE TIME FOR WRITING. THERE ARE SEVERAL AVENUES FOR SELF-PUBLISHING, BUT IT WOULD BE GREAT FOR A PUBLISHER TO PICK UP AND RUN WITH YOUR PROJECTS....

JAMES SHOWERS JR, May 12, 2013

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Thank you for your thoughtful and insightful words. I know thst Parkinsons isn't genetic however, my father diagnosed at 40 and his two sisters have it. I have always been paranoid and watch for symptoms. The last year i have noticed a twitching/ tremor in my right index finger and sometimes hand. It has progressively gotten worst. I am thirty and debate getting tested due to being labeled with a a precondition. Is there much they can do in the early stages to prolong symptoms from progressing that would warrant testing? Please email me at tiffany_jo_fisher@yahoo.com thank you so much! Stay strong.

Tiffany, Jul 25, 2013

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I had a consult with DR Bouyini on 10 31 13 and was given a diagnosis of PD. I have all the classic symptoms: tremors, stiffness and slowness when I move. I'm 42 years old. I thought Bouyini did a very thorough exam and patient history. I felt like he really listened and paid attention to me. I'm being referred to Froedert to see a motion disorder specialist and have a DaTSCAN.

Jill, Nov 2, 2013

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Dave,

Thank you for sharing your story. I too am a bald, overweight, middle aged man. I started to experience twitching in my right pinky finger. Interestingly enough, my father was diagnosed with Parkinson's when he was 51 and I am 52. I have not been diagnosed yet. But I have a appointment at the end of the month. So I am hoping that this is something minor!

Marshall, Nov 16, 2013

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I was very interested in your story as well. I have been experiencing a lot of uncontrollable twitching in my middle and ring finger for about a month. My father had very severe Parkinson's, and although I don't think it is really considered hereditary, I wonder if it predisposes me to be more susceptible to whatever triggers the Parkinson's. I am going to schedule an appointment with my doctor as soon as possible to hopefully get to the bottom of what is going on. I am 58, and my dad was also in his late 50's when he was diagnosed. I'm praying that this isn't what is going on!

Dorothy, Jun 5, 2014

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I am 43 and have had many symptoms over the last 7 years. I have been to at least 15 different doctors. And every test I have is normal. The one constant symptom over the last 7 years has been jaw discomfort. I have seen 3 jaw doctors who tell me my jaw is fine and it is Neurological. And that I am having tremors in my jaw. I also have some tremors in my hands. When I look at the symptoms of PD I have probably 90% of them. I'm wondering has anyone had the jaw tremors, because for all these years no one has understood the feeling I was trying to explain. When my jaw is not tremoring (which is not often) it is like a magnetic force clamping my jaw shut. The pressure is unbelievable. Like my jaw is just froze.

Gina , Jul 30, 2014

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Am 36, about three years ago my right index would twitch every now and then, I wouldn't think about, lately its more often, and been so tired noticed a low underlying twitch or random rhythm throughout right side of body its weird- not all the time, but never realized moving slower until read your post as my coworkers whom have been with me a while; I've been there 15 years on the job -noticed am moving slower call me 'oldman' my premature gray (maybe its a thyroid problem as I have all white/gray hair? Started graying at 16 I dunno) am frustrated, angry;

scared; looking online now as at work yesterday had a cup of coffee in my hand and it and plop crash broke on ground... Don't like what I see compared to my symptoms, but we can only move forward. Looks like I am going to have to talk to my doctor.

Paul, Aug 1, 2014

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