You Never Miss the Dopamineâ€Ś (until the brain runs dry!)
By Bill Schmalfeldt
Copyright 2010 Bill Schmalfeldt All Rights Reserved. No part of this book may be reproduced in any form, except for the inclusion of brief quotations in review, without written permission from the author. ISBN-10 1453829369 ISBN-13 972-145-3-82936-3 Published in the United States of America
Follow Me on Facebook http://www.facebook.com/bschmalfeldt Tweet Me on Twitter http://www.twitter.com/ParkyBill Check Out My You Tube Channel http://www.youtube.com/bschmalfeldt And Read My Daily Blog http://parkinsondiary.com 2
Howdy! This is my follow-up book to the dreadfully unsuccessful “No Doorway Wide Enough”. It‘s all new material in book form – not a scrap of recycled material or filler – except, perhaps, in the stock paper. I have no control over that. So leave me alone about it. What we have here, gentle reader is a series of essays about some of the non-motor symptoms of Parkinson‘s disease. This is not an educational book. This is not meant to teach you a damn thing about Parkinson‘s disease. In fact, if you find yourself accidentally LEARNING something, I want you to march right back to the book counter and demand a refund… unless you got this online, which you probably did, in which case … if you used a debit card, you‘re screwed. May as well read it anyway. 3
No, dear reader, this is just me living my life and telling you about the results. Where “No Doorway Wide Enough” was a telling of what I call my ―Parkinson‘s decade‖ – from diagnosis in 2000 to my volunteering for experimental brain surgery in 2007 to the decline of the last couple years – this book is intended to amuse and astound, to entertain and enchant, to show you that it doesn‘t matter how big the challenge is, it can be overcome with a sense of humor. Or other such bullshit. If you start ―feeling sorry‖ for me… PUT THE BOOK DOWN! That‘s not what it‘s for. This book is about my life as a guy with Parkinson‘s disease and the other stuff that annoys me. So not everything in here will have something to do with PD. There will be some politics of the liberal variety (and if you don‘t like that, blame the Parkinson‘s for making me crazy). There may be some complaining about the way people behave, or pushing and shoving in the stores. I may have a thing or two to say about how my dogs seem to think they RUN the damn place. (Right now, for instance, my black border collie Raven heard something outside and barked. I pointed at her and said, “I’ll pound you!” She smiled and walked into the kitchen so I could scratch her butt. Such FEAR I inspire.) So, as was the case with the woefully unsuccessful (but really very funny and you should still buy it if you like funny books about diseases – and who the hell doesn‟t?) “No Doorway Wide Enough,” this book is
about how to maintain a sense of humor when it seems like you are losing everything else. There is no cure for Parkinson‘s. But it can‘t affect the human spirit – unless you allow it to. Now, if you‘re looking at one of those ―preview panel‖ things on one of those darn online booksellers, quit farting around and buy the damn book. “Having been some days in preparation, a splendid time is guaranteed for all!”
(Yes, yes, I know. That was a lyric from “Being for the Benefit of Mr. Kite” from the Sgt. Pepper Album by the Beatles. Get off my back about it, or I swear, I’ll pull this car over right now and… well… you don’t want to know!)
DEDICATION I touch on this later in the book. But when you young kids are picking out your life partners, here‘s something to consider. Will that person BE there for you, no matter what? Will he/she take care of you when you need care? Will he/she scold you into being self-reliant when you are capable of doing so? Will he/she cheerfully go to the store to buy your disposable adult undergarments? And when things get worse, will he/she see to it that all your health care needs are tended to, including feeding and cleaning and wiping and being patient with you when your emotions run away with you understanding it‘s not your fault when you cry for no reason or say something even stupider than usual or poop in your mother‘s nice recliner? I got me someone like that. Have been with her since 1988, and I love her very much. To you, Gail. May my dementia be light and my delusions be amusing ones.
LET'S BEGIN WITH "THINGS THAT ANNOY ME" Now, more things that annoy me, culled from the popular media's reporting on Parkinson's disease! "Eeeeew! Grampa is OLD and SHAKY and DROOLY!!!" First, this whiny note from a whiner, whining about bringing an elderly parent into her home. (http://www.washingtonpost.com/wpdyn/content/article/2010/06/14/AR2010061405587.html)
My father lived with my family for nine months, following the onset of Parkinson's disease. His depression settled over the whole house. Dad clearly didn't want to be there, and the kids, 16 and 8 at the time, avoided the living room, where dad hung out and slept in the chair constantly, refusing to take any interest in life. Both of the kids essentially quit inviting guests over. They were not immune to the depression and, not to be melodramatic, the feeling of death that surrounded us. I was driving home from work three or four times a day to check on him, feed him and monitor his medications. My husband was a saint about it, but eventually even he said, "We can't keep this up. We are raising our children in a nursing home."
Once his illness was diagnosed and he began medication, Dad was actually able to move for a year into an independent living facility, and I truly think he was happier there. He eventually had to go to a nursing home, and has since died. You THINK he was happier there? Did you ASK him? Did you even frickin' VISIT him? Sweetie? I guarantee ya! Nobody was happier about getting out of your house of whiners than your dad was. You poor, sweet little slackers and your snot-nosed kids could learn a thing about family by learning how to care for an elderly member who needed your help. And here's how she winds up her note. I guess what I am trying to say is that in spite of our best intentions, we can't stop the natural course of life, and that also we as parents have to be acutely aware of the effect on our children when a household changes so dramatically. And, too, it is not always the desire of an elderly parent to be in their child's home. My father had been extremely independent all his life and it was almost more than he could take to have the balance of the relationship change so drastically. Nobody was ASKING you to "stop the natural course of life." Your friends calling your husband "a saint" didn't make you GOD! And I am more than sure there were nights when your crappy little diaper needed changing or your little cough kept your parents awake all night or you had a fever and your dad ran to the drug store to get something for you. And yet you talk about your father like he was some sort of malignant presence in your home. Shame on you. Shame on your husband.
Shame on your children. And congratulations to your dad for dying and finally being rid of you. Now, would you trust a news report that misspells a simple word like dementia? (http://www.kusi.com/health/96488854.html)
Each Wednesday during Good Morning San Diego, KUSI provides the latest research, advice, and health information. New research shows that Parkinson's disease doesn't only affect the motor system, it can also cause dimentia in about a third of patients. This coming Friday, UC San Diego will be hosting a free memory screening clinic. Dr. Joanne Hamilton, from UC San Diego Medical Center, was here to tell us how this screening can benefit Parkinson's patients. TV News. Meh. Oh, Goodie! Another PD Preventative! CoQ10, Glutathione, a handful of Pomeranian fur -seems like everyone has something that will make your PD better or keep you from getting it. Coffee (which I've been drinking since I was 14), nicotine (I've been smoking cigars since I was 17) -- they're all supposed to be neuroprotective. Now this. (http://www.allvoices.com/contributed-news/6078534-small-amount-ofvitamin-b6-may-help-prevent-risk-of-parkinsons-disease)
The latest research reported in the July 2010 issue of Life Extension magazine, page 74 (print edition is published in June) notes that vitamin B6 may help prevent Parkinson's. See the article, "Latest Research: Vitamin B6 May Help Prevent Parkinson's." The recent 9
study revealed that "inadequate dietary intake of vitamin B6 may increase the risk of developing Parkinson's disease by 50%." Scientists examined the relationship between dietary intake of folate, vitamin B6, vitamin B12, and vitamin B2 as it relates to the risk of developing Parkinson's disease. After adjusting for other factors, scientist found that low intake of vitamin B6 was associated with an approximately 50% higher risk of Parkinson's disease. Meh. I suppose it's like chicken soup for a cold. It couldn't hurt... And now, something ELSE I coulda told the researchers... (http://www.prnewswire.com/news-releases/new-study-showed-the-impact-ofgastrointestinal-disorders-in-patients-with-parkinsons-disease-96369484.html)
PD affects the tummy. New data from a retrospective cohort study showed that up to three quarters of patients with Parkinson's disease (PD) developed gastrointestinal disorders (GID) that can have a substantial adverse effect on major PDrelated clinical and health economic outcomes. These data were presented at the 14th International Congress of Parkinson's Disease and Movement Disorders in Buenos Aires, Argentina (June 13-17, 2010). "The new retrospective cohort study suggested that the prevalence of gastrointestinal disorders among patients with Parkinson's disease was high, increased over time and had a significant impact on clinical and societal outcomes," said Dr. Florent Richy, Head of Epidemiology, UCB & Adjunct Professor of Epidemiology, University of Liege, Belgium. 10
"Gastrointestinal disorders can impair the onset of symptom relief by Parkinson's disease drugs and these data help us to better understand the prevalence and consequences of such disorders amongst patients diagnosed with Parkinson's disease." The study found that gastrointestinal disorders in PD patients were associated with significantly higher rates of neuropsychiatric and motor disorders, as well as increased emergency room admissions, number of concurrent drugs and non-PD healthcare costs. So THAT'S why I'm having cognitive problems. It was the ICE CREAM!!! MY DAD WAS A BIG, BIG MAN He was a Giant. Figuratively, if not literally. My old man probably stood about 5-9 in his stocking feet. But even when he was dying of cancer, when his voice boomed — you listened. I don‘t know how he did it, managing to keep a roof over the heads of his wife and seven active and hungry kids (born in the span of 12 years). He was a maintenance worker at Alcoa in Bettendorf, Iowa when I first recall knowing him. He also worked a couple overnights a week at the Sweetheart Bakery in Clinton, where we lived. The benefit from that being there would usually be a bag of donuts and sweet rolls on the kitchen table when we got up on Saturday morning. He was a tough guy. He was from the wrong side of the tracks. My mother‘s parents were horrified when this
hoodlum with the t-shirt with the pack of Chesterfields rolled up in the sleeves and his tight, hip-hugger jeans with the cuffs rolled up came down to the NICE part of town to ask their daughter out. He spoke not a word, except to ask, ―Marl here?‖ My grandfather and uncle Herb once decided not to answer him until he spoke a complete sentence to them. I‘m not sure if he ever did. They met in 1949. It was love at first sight that Dad almost ruined by his location for a first date. He took her to the Lyons Theater to watch a Three Stooges festival. OK. Even by today‘s standards, that‘s pretty dumb. Nobody likes the Stooges more than I do — but a FIRST DATE? With a GIRL? Girls HATE the Stooges! But, surprisingly, there was a second date, then a third and so on. And on June 17, 1950, John Schmalfeldt and Marilynn Hanger became man and wife. Oddly enough, the first kid didn‘t come along until 1952. That was my sister, Cindi. Then in 1953, Jack popped in. In early 1955, it was me and Bob — two for the price of one. Joe joined us in 1957, Becki in 1962 and I think I have a sister who was born in 1964, but she wants nothing to do with this family anymore so to hell with her. Oh yeah. He was a tough guy. When I got beat up by a gang of kids in my early teens and lost my glasses, Dad said, ―Let‘s go find your glasses.‖ He grabbed a baseball bat and we walked back to where I was beaten up. I don‘t think Dad was going to use the bat to organize an impromptu baseball game with the thugs. We didn‘t have a ball. He liked PRETENDING to be the tough guy with us, too. Mom was the actual enforcer. There was none of 12
this, ―Wait ‘til your father gets home‖ crap at our house. If you had a spanking coming, Mom wasn‘t shy. Dad was more the FEAR of punishment. If you were loudly misbehaving, he‘d make you lay down on the floor by his feet while he read his book or watched the TV until he decided you had learned your lesson. Oh, he‘d often threaten to chop off our heads and spit down our windpipes, but to the best of my recollection, he never actually did that. One Christmas morning, Dad was acting like a real jerk. As Cindi, Jack, Bob and I were older, it seemed most of the presents were being handed out to the littler kids. When all was said and done, the four of us felt gypped. Dad called us into the bathroom for a private ass-chewing. ―Now look,‖ he said. ―I want you four to march into my bedroom. I have a stereo in there for your mother. I want you to bring it out and give it to her and with bright, smiling faces, say, ‗Merry Christmas, Mom‘. And if you DROP it, or SCREW THIS UP, you will RUE the day I conceived you.‖ Fine. So not only did we get screwed, present-wise, but the old man was being a jerk. So, as ordered, we marched into the bedroom. On the bed was a stereo. But the label said it was for Cindi. Next to the bed, THREE SHINY NEW STING RAY BIKES! GREEN! WITH BANANA SEATS!!! We turned around and the old man was standing in the doorway with his cup of coffee and that half-grin that we all, happily, inherited from him. ―Now, let‘s see which of you will be the first to break something,‖ he said as he walked back down the hallway. We heard the ―crunch‖ 13
as he stepped on one of the younger kids‘ toys that was hiding under wrapping paper. No one said a thing. The last time I saw him was when he was in the hospital in 1982. He was diagnosed with pancreatic cancer in 1981 and had most of it removed. But he was terminal. He sure didn‘t act like it. Bob, Joe and I stood at the foot of his bed. Dad told us he loved us. Then he said, ―Now, be a help to your mother and don‘t mess up the house. If you do, when I get home — and I WILL COME HOME — I… will… beat… your… little… asses!‖ He woulda, too! On Feb. 15, 1983, I was assigned to the USS Towers (DDG-9) homeported in Yokosuka, Japan. I ran the ship‘s onboard radio and TV station. An ensign came by my compartment and said the Executive Officer wanted to see me. It‘s NEVER a good thing when the XO wants to see you. I made my way to his office, and sat outside as I heard him chewing out a chief petty officer. The CPO left, and he called me into his office. ―Bill, I‘m afraid I have some sad news,‖ he said. My first thought was, ―He knows my first name?‖ He handed me the telegram that told me my father had died on Feb. 13. I would be granted 30-days emergency leave to go back to the States and they would get me onto the first plane possible. As I packed my stuff, my mind flashed back to a night when my Dad, my brother Jack, my brother Bob and I were all sitting around the kitchen table playing Poker. Oh. We were also drinking. Quite heavily. Suddenly, Dad stopped dealing. 14
―Boys,‖ he said with as much seriousness as a man with a belly full of Jim Beam could muster, ―When I die, as someday I must, I don‘t want a big, fancy funeral. I want to be cremated. And I want all my boys to sit around the table with my urn right there in the middle. And I want you to raise a toast of good bourbon and say, ‗Here‘s to John Matthew Schmalfeldt, one sweet son-of-a-bitch.‖ And every now and then, open up the lid and drop in a shot until I get good and muddy.‖ Well, I was in Japan. I didn‘t have access to the urn. But I did have friends, and the enlisted men‘s club did have Jim Beam. I gathered my friends, we sat around a table and I poured a shot for each of them… and one for my dad. ―Shipmates, here‘s to John Matthew Schmalfeldt. One Sweet Son-of-a-Bitch!‖ I said. Then I downed the shot. 15
Everyone else downed theirs as well. Dad‘s sat, untouched. Until it was time to leave, however. I drank it. Dad hated to see good bourbon go to waste. There are so many stories about my Dad. Many of them, slightly-fictionalized (to varying degrees), are in my book ―Hunky Dunk.‖ But the man was larger than life. Even now, 27 years after his passing, I feel his presence every day. WHEN THE HELL DID THEY MOVE WINNEMUCCA? Another interesting dream last night. A friend of mine (who I've never seen before in my life) and I were moving from Winnemucca, Nevada (which, for the purposes of the dream, was down by Las Vegas and not in the northwest part of the state). We had to drive a U-Haul truck up to Reno to get something, then back down (?) to Winnemucca to pick up another friend (who I have also never seen in my life) and then head to Florida. Our progress was hampered at every small town we drove through on the highway by gangs of Hispanics and Native Americans who claimed that there was a toll for driving through their towns. After the second time this happened, my "friend" and I were pulled from the truck and hauled into a gas station as prisoners. We were threatened with guns and told to give them all our money. I grabbed a payphone and called the county sheriff to see if he knew what was going on in this town. He said it's 16
their town, their laws and they're free to do what they want. Just then as the sun was coming up (which pissed me off because I wanted to be back "down" in Winnemucca by sunrise), I looked out at the gas pump and these Hispanics and Native Americans had converted the UHaul into some sort of souped-up hot rod U-Haul. They gave us the truck back and said we should be able to make up the time we lost being held hostage. So we lit out for Winnemucca, found our friend (I think it was a newspaper office that we were moving to Florida), loaded the truck and hit the road. Oh... Then I had another brief one where I was watching Sesame Street and none of the Muppets had eyes. And all the gags were about how they couldn't see anything... because they had no eyes. Whatever. FELL ON THE BED, BROKE MY HEAD Well, not really. My head isn't broken. But it is sore. I was doing my PT balance exercises in the kitchen, and I noticed that I was particularly wobbly, even doing the easy stuff like two feet together, side-by-side. Felt like I was gonna fall. Knocked the plastic flowers and their vase off the counter. So I decided to go into the bedroom, so if I fell it would be onto something soft. Like a bed. Or a dog. I did the one-foot-half-in-front-of-the-other thingie. Closed my eyes, crossed my arms over my chest, and immediately began to wobble. I over-corrected from a 17
lean to the right and fell to my left. Right onto the bed. Right onto a dog on the bed. And the back of my head crashed into the bedroom wall with a loud "WHUMP!" I said the only thing I could think of. "OWWWW!" From the bathroom, Gail hollered, "Are you all right?" I said, "Yeah," and flopped back on the bed, closing my eyes so the room would stop spinning. I didn't lose consciousness. But for a little while it was more difficult than usual to speak. I'm still wobbly, still moving slower than I usually do, but I think I will be OK. So will the wall. (The Next Morning...) I don't seem to be suffering any ill effects from bashing my skull on the bedroom wall yesterday. I don't feel any particular increase in wobbliness or dizziness. I'm still slow, still talking KINDA slow, but at least I'm making sense. Banana border tickle mafia. Weasel preen glue, whiffle hamburger purchase in the glade. Besides that, I will have to overcome the fear of falling when I do my exercises again. When ya fall off the whore, ya gotta get right back on. Staple umbrellas for the hyoid principalities. And that just about says it all.
WANDERING WILLIE I suppose I should point this out... for the record, at least... as we track my slow, insidious slide into dementia... When Gail and I went to Best Buy last night to get the second of the two computer modems we ended up having to buy (we had to return the first one), she parked the car in a handi-crippable space, I hung up the placard, opened the car door, and started walking away. In the wrong direction. Towards the back of the car. Then I heard a voice. "Bill? Where are you going?" I turned around. It was Gail. She was on the sidewalk. The sidewalk that leads to the Best Buy front door. Fact of the matter is, I had NO IDEA where I was heading! I was just walking. Seemed like the thing to do. I smiled sheepishly and hobbled over to where she was. She shook her head. "IT BEGINS!" she said, laughing. "It began a long time ago," I replied, also laughing. "Yeah, but it's beginning BAD now," she replied.
Oh, Parkinson's disease. Where will you lead me next? Now... let this be a lesson to all you young, strapping studs or beautiful chickie babies who are thinking about settling down with someone for the rest of your life. Look at that person and ask yourself... "Will she (he) be there for me when my mind starts to slip? Will she (he) take care of me?" It's an important consideration, young'uns. And, in my case, in the final analysis, after two mistakes, it seems I lucked out! A BAD CASE OF THE EMPTIES I got a bad case of the empties. The blanks. Gail is at the store. I have a black border collie at my feet, using my right foot as her pillow. In the absence of any outside stimulus, I would be perfectly content to sit here and stare at a blank screen. All day. I'm not sad. I'm not happy. I'm nothing. Flatlined. My brain seems to be just kinda occupying space in my skull. Last night, I had particular difficulty speaking... getting stuck on syllables, words coming out in a rush. That's not so much of a problem today. Parkinson's disease. My lifetime companion.
Gail is my soulmate. She's my OTHER lifetime companion. She's gonna come home with chicken. Did I mention that? Really enjoyed my interview with Warren Krech at KWOS Radio in Jefferson City, Mo. yesterday. Total books sold since then? Zilch. Zip. Zero. Maybe I'm just a shitty writer with nothing interesting to say. If I hear a TV commentator say "Larry King is hanging up his suspenders" ONE MORE TIME, I shall run amok. Not that I'm hung up on selling books. I'd love to make a less-than-embarrassing donation to my PD charities. But if folks ain't interested, then they just ain't interested. If Parkinson's disease happened only to attractive redheads with knockout gazongas and the disease caused uncontrollable nymphomania, betcha THEN it would get some notice. But most of us are old, a lot of us can't hit the ball out of the park anymore (wink-wink), we're twitchy, we drool, we talk funny, we walk funny, we remind people of their own impending death. Try writing a funny book about THAT! Where's Gail with that chicken? Did my 20 minutes on the bike this morning. Still have to do my PT walking/balancing exercises. And the Wii Fit is a naggy little bitch if you miss a couple days, so I suppose I'll have to do some of THAT, too! My Day. Up at about 6:30.
Take pills. Losinipril and Metoprolol for blood pressure. Stalevo for PD. Zoloft to keep from jumping (very slowly) in front of a bus. Prilosec, because it works. Check work e-mails. Open the Patient Recruitment/Public Liaison mail folder. Toss out the spam, divide the "good" e-mails to whoever is supposed to get them for that day. Check out blog to see how many dropped by during the night. (Take a few minutes to get over the disappointment.) See if I sold any books overnight. (A couple more minutes to get over the disappointment.) Make cappuccino for Gail. Make cappuccino for me. Drink said cappuccino. 20 minutes on the exercise bike. Shower. Shave. Plant myself here at the computer and put out fires as they flare up. If things are slow, do my PT walking and balance exercises. 22
Take 11am Stalevo. Eat Lunch. Plant myself here, record podcasts, put out fires as they flare up. If things are slow, do my Wii Fit workout. Take 4pm Stalevo. Watch Law and Order reruns. Have a glass of wine. Watch the Daily Show replay. Then Colbert rerun. Have a glass of wine. Take nighttime pills. 2mg of Klonopin to stop the nighttime screaming and slapping and kicking. Ambien to get me to sleep in the first place. Dulcolax to make the following morning less of a blood festival. Go to bed. No WONDER I'm usually so friggin' tired allatime!!!
BUT IT FEELS GOOD WHEN I STOP! I think it's time I say "Enough with the Balance exercises." I'll keep doing the walking, I'll keep doing the bike riding, I'll keep doing the Wii, but the balance exercises are gonna kill me. Literally. Monday, I fell and hit my head while doing the exercises. Tuesday, I fell onto my mattress, no harm done. Same thing Wednesday. Today, I fell onto my mattress and gave the back of my head a glancing blow against the wall. Then I fell against the OTHER wall and bruised my arm against the corner of a print Gail has hanging in the bedroom. I use the walker, of course... but the walker falls WITH me. Face it. I'm not gonna get my balance back. It's gone. Practicing with something you don't have just doesn't seem to make any sense to me. And I don't want to keep hurting myself. Now, when Gail gets back with my ham & cheese sammich, I'll feel better. :) SENSORY OVERLOAD! It's a moderately warm Saturday. Gail and I went to Arundel Mills Mall for lunch and to get me some outside exercise. I don't freeze up nearly as much anywhere else as I do at a crowded shopping mall. 24
There's people coming at you from all sides. I can't tell who's paying attention to where he's walking, I have this constant fear that someone is gonna bump into me and make me fall. People cut in front of me and make me freeze. Little kids come running up alongside from behind and I don't see 'em coming and I freeze up. I'm trying to maintain good posture and body mechanics when all I really want to do is hunch over, look at my feet and take tiny little steps. I catch myself stooping over and force myself to stand up straight. I catch myself walking with my mouth open -- one step away from drooling on my shirt -- and force myself to close it. I walk, taking big boy steps, and the tips of my shoes dig into the floor and I almost fall. I have one of my "illusions" as I "see" someone running towards us from the left. I turn my head. No one there. The pattern on the floor changes, or there's a slight elevation or dip in the floor, and I freeze solid. Sometimes as I stand there waiting for the feeling to pass, it feels like I'm going to tip over one way or the other and Gail saves me. Gail saves me a lot of the time. She gets me home safe. I'm still in there fighting. But one of these days it's all just going to be too much for me. But that day isn't today.
EVER BEEN IMPALED BY A DOG'S TOY BOX? I almost killed myself -- or so I thought, at first. After Wednesday's power outage (100 minutes, no power, 97 degrees, THANK you, BGE... that's how they do it each summer... "OH NO! THE GOVERNOR NEEDS ICE CUBES! SHUT DOWN THE TRAILER PARKS!") Excuse me. I was ranting and rambling. Anyway, the power outage killed my son's cable box. So Gail took it down to the Comcast place and swapped it out for a new one. And since TJ has a HDTV now, we decided to cough up the extra $7 to get him HD service. I gave him our old cable box and was trying to put in the new one on our tv. I tried to get down on the floor, but as I was doing so, I fell and stabbed myself on my left side, just below the ribs, on the corner of the doggy toy box. It's a canvas box with a metal frame, and I was certain I had impaled myself liver-deep on the damn thing because I COULD NOT MOVE to get off of it. When I finally COULD roll to the floor, I just laid there in extreme pain while Gail stood over me asking, "What did you do? What did you do?" (Note: She did not ask "what happened?" She asked "What did you do," indicating that I had done something stupid and was suffering the just consequences of my action. It was a fair assumption, so I'm not complaining.) It was a few moments before I could speak. I asked Gail to lift up my shirt and tell me how much of my intestines were protruding. Gladly, the answer was
"none." I have a dinky little "owie" on my left side, under my ribs, and it hurts. Might bruise a little. So upset was I about this that I launched into a delirious state where I believed that LeBron James had gone to the Miami Heat and I actually cared about it. Ah. Parkinson's disease. You are the tricky one! THIS IS NOT A FATAL DISEASE! Let's get one thing clear. Parkinson's disease is not a fatal illness. You die WITH, not OF Parkinson's disease. It's one of my pet peeves, newspaper or other media stories that say someone "died of Parkinson's disease." It spreads a false believe that this is a fatal condition. Fact of the matter is, more people with Parkinson's die of cardiovascular disease than any other single cause. People who die from COMPLICATIONS of Parkinson's disease are folks who fall and break a hip and develop pneumonia and die. Or folks whose swallowing difficulties cause them to inhale a turkey leg and they get pneumonia and die. But the cause of death is something ELSE! Parkinson's didn't kill the guy. Falling, breaking his hip, becoming bedbound and getting pneumonia did the trick. Let's look at how several different news organizations wrote about the same death of the same guy -- Jim Bohlen, one of the founders of Greenpeace. The Province, a Canadian publication leads with: (http://www.theprovince.com/health/Greenpeace+Founder+Bohlen+dies+from+Parkin son+disease/3253391/story.html)
Greenpeace Founder Jim Bohlen died from Parkinson‟s disease last Monday. He was 84. Well, actually, no he didn't. Seven paragraphs into the story: He was diagnosed with Parkinson‟s disease four years ago, his wife Marie said. Five weeks ago, he had fallen off a chair while exercising and broken a hip. “He just went downhill from there,” Marie said. He died Monday at St. Joseph‟s Hospital in Comox. That'll happen! And my first question is, what in the bloody hell is a 84 year old with PD doing exercising ON A CHAIR??? My neurologist is CONSTANTLY telling me to avoid things that could even POSSIBLY lead to a hip-breaking fall. EXERCISING ON A CHAIR? This guy didn't die of Parkinson's. He died of complications of a broken hip, caused by a fall that was caused by PD. The Vancouver Sun does a better job of it. (http://www.vancouversun.com/health/Greenpeace+pioneer+Bohlen+dead/3248033/sto ry.html)
Jim Bohlen died Monday at the age of 84 after a long battle with Parkinson‟s disease. Absolutely true... but still leaves the impression that it was the PD that killed him. The Old Grey Lady, the New York Times, is more accurate. 28
The cause was complications of Parkinsonâ€&#x;s disease, his daughter, Margot Bradley, said. But the story says nothing about the fall, the broken hip and the pneumonia that killed him. If a man walking down Park Avenue is killed by a falling piano that fell because the rope hauling it up to an open window 10 stories up was cut by a shard of metal caused by an exploding transformer that blew up when a bus hit the telephone pole, you don't say the man was killed by a bus! The bus set off the chain of reactions that led to the man's death. The man would not have been crushed by the piano without the bus accident, but it wasn't the bus that killed him. Same thing with Parkinson's. If you can keep living without falling (from a chair while exercising) and breaking your hip and getting pneumonia or choking to death on a piece of stew meat because your dysphagia made it go down the wrong hole, or your dementia caused you to forget it's not a good idea to stick a fork into a plugged in toaster, then you will live a long, parky life. Parkinson's is a life sentence, not a death sentence. Just don't put yourself into situations that could lead to your hurting yourself... like I did... yesterday... because I'm a moron. (Friggin' thing STILL hurts...)
PILLS DON'T WORK IF YOU DON'T TAKE THEM I've been forgetting to take pills. I have my iPhone set to go off when it's time for my 11 am Stalevo, my 4pm Stalevo and my 8:30 pm Klonopin and Ambien. I rarely forget to take my pills in the morning, because it's all part of the morning routine. It's the first thing I do every day. But if I happen to be involved in something at work, or writing a blog post, or examining my navel for lint that I don't think came from MY clothes, if I don't get up IMMEDIATELY and take that 11am or 4pm Stalevo, I WILL FORGET! Usually, I will remember an hour or so later. But about twice a week, I forget it completely and just recycle the unused pill back to the first open slot in the pill box. I had a horrible night's sleep last night. (Trust me, there's a point to this sudden shift in narrative.) I went to sleep just fine, then woke up at 11-something and just laid there. Nothing bothering me. Very comfortable. Just not sleeping. I eventually drifted off long enough to have a little dream, then I woke up again. Around 3 this time. Laid there until about 5. Not anxious. Not worried about anything. Just wondering why I was having such a rough night. After Gail got up with Raven at around 5:30, I drifted off again. Had a dream about being a new kid in high school. There was only one desk available and I took it. But it turns out that it was John Goodman's desk, and he wanted it back. So I had to sit on a heating vent in the back of the classroom. The teacher said not to worry
about it, they'd try to get a desk delivered as soon as possible. At lunch time, I was angered to learn there was no cafeteria. "What kind of high school doesn't have a cafeteria," I complained to anyone who would listen. When I got back to the classroom and sat on my heating vent in the back of the room, the teacher gave me two wiggling little puppies... they may have been Yorkies, not sure. It was going to be my job to take care of them. Then I woke up again, saw that it was a bit past 6 and decided, "That's enough of THIS crap." Got up, made my way out to the kitchen. My two girlies circled around me trying to get THEIR kisses before I could give Mom HER kiss. Everyone got kissed, I went into the kitchen and took my morning pills. And there they were. My last night's "Nitey-Nite" pills. My Ambien, to help me get to and stay asleep! My clonazepam to make sure that I have NORMAL REM sleep, the RESTFUL kind of sleep you need to feel refreshed in the morning. When my 8:30 alarm went off, I took my iPhone into the kitchen, plugged it in for the night, turned off the computer, and went back to the living room to watch the last half-hour of "Cops." The thought of taking pills never even entered my mind. This is it, kids! This is the onset of Parkinson's Disease Dementia! This forgetfulness, this inability to focus, this -- wackiness! Better communicate with me while I can still understand you.
THE MOST FRUSTRATING PART IS... It is the single most frustrating thing about my current state in Parkinson's disease progression. It's not the hallucinations. I can deal with the occasional hallucination (or, "illlluuuuuuusion" as my neuro doc calls them). I had another auditory hallucination yesterday. This would be the second such. The first is documented here. Yesterday afternoon, while seated at this very computer, I heard a rather loud "MEOW!" coming from the living room. The TV was on, but it was Andrea Mitchell talking to somebody about something, and she RARELY meows on her show. I looked at my two dogs. Certainly THEY would have been alerted by such a loud meow. They both laid there, sleeping. But I HEARD a LOUD MEOW! So, we chalk it up to auditory hallucinations. It's not the walking, the freezing or the balance problems. I'm used to that now. I know how to get myself free when I freeze. I know to try to keep my center of gravity balanced at all times. I refrain from doing things that will cause me to tip over. It's not the slowness. I'm in no hurry to get anywhere... although it is a hassle when a sudden "potty emergency" comes on and I have to make my slow way down the hallway to the bathroom while the urgency grows. But that's what the "Depends" are for. It's not even the onset of dementia. It's frustrating not being able to figure things out sometimes and lacking focus and not being as quick on the uptake. But I figure when it fully sets in, it'll be everyone ELSE's problem... not mine. :) 32
No, the single most frustrating thing about where I am in my Parkinson's progression is the WAY IT'S MESSING WITH MY TALKING! It's not the typical whispery, throaty, hoarse PD kind of speech. It's just that I've got a case of the "yibble bibbles!" Just now, for instance. Gail said she was going to try to tackle cleaning TJ's office today. What I wanted to say was, "Feeling energetic today?" What came out was, "Feel.. feel... feel...um... feeling..." Gail finished my sentence for me. "Energetic? Not really. But it has to get done." I started saying something else, I don't even remember what it was, but it was all garbled and nonsensical so I put my face in my hands and moaned. "JEEEEEEESUS, I hate this!" (That part came out quite clearly.) For someone who has made a living with his voice, with his ability to be witty and humorous and snarky off the cuff, this inability at times to express myself is particularly frustrating. I don't even like talking on the phone any more because of it. Maybe if I start walking around with a blue jacket, red bow tie and no pants, I can just tell people I'm doing a Porky Pig impression. Then we'll blame it in the dementia. OK, SO I LIEDâ€Ś â€œYou Never Miss the Dopamine Until the Brain Runs Dry." Catchy title for my next book. Except there ain't gonna BE a next book. 33
Oh, don't blame yourselves. A few of you actually DID purchase a hardcover or paperback or Kindle or ebook cover of either "Deep Brain Diary" or "No Doorway Wide Enough." And as soon as I get my meager royalty checks for those purchases, I'll cut a fancy check for $45 each to the National Parkinson Foundation and the Charles DBS Research Fund at Vanderbilt University Medical Center. My mistake was misunderstanding the market. And this would also explain why I had to take the selfpublishing route. Agents KNEW folks wouldn't be interested in a patient's first-person story about Parkinson's disease. Publishers KNOW your name has to be Michael J. Fox before they'd publish such a book because otherwise they'd be wasting their money printing a book written by some unknown mook where the ultimate outcome for the writer would likely be worsening disease, dementia and then death. I mean, Jesus! Who wants to read a downer book like THAT when there are Vampire/ Werewolf movies and Harry Potter and self-help books about how you can stop dating the wrong kind of man out there? I've written about this before. You don't see telethons for Parkinson's disease because there aren't any cute, chubby little children with Parkinson's for Jerry Lewis to roll out on a wheelchair to make you feel sorry for. You don't see a coordinated "Susan B. Kolman Race for the Cure" effort to raise money for Parkinson's research, because there aren't a whole lot of vigorous folks at this stage of PD who look bright, clear-eyed, and seem otherwise healthy and vibrant except for that killer cancer that your donations will help cure. You don't see a 34
national campaign for Parkinson's like you do for Autism because, for God's sake, Autism happens to KIDS! And who wouldn't want to do something for the KIDS? You don't even see the kind of campaign that the ASPCA has on TV now with the sad puppies and kitties in cages because who WOULDN'T feel sad about the sad puppies and kitties, and the little kids in Africa who have to get their daily drinking water from a stream full of water buffalo excrement, or little Maria Guadalupe who can't go to school because she has no shoes? Best WE could do would be to show what Parkinson's does to people. And since consumer testing shows that, by and large, people don't LIKE even LOOKING at old folks... even HEALTHY ones... that idea is a loser. Look at your TV, for God's sake. Even the commercials that cater to the elderly show older folks who look like they could run a 5K without even bothering to stretch first. Long, lean women with a few wrinkles and nicely greyed hair. Handsome, rugged men with rippling muscles and a thick crop of silver on their heads. THAT'S what the public WANTS to see in its old folks! THAT's the image that SELLS! Maybe if we concentrated on Young Onset Parkinson's Disease. Show folks how 10 years of Parkinson's can turn this... A happy, carefree guy, loving life (and apparently a plate full of veggies and fruit or something)... Into... this... 35
A guy with just as much going on upstairs as before, as bright, as intelligent, as witty as he ever was, but due to Parkinson's masking, he can't show the emotions he's feeling, He has trouble sitting up straight, he's fully aware of how his body is betraying him and he tries to be cheerful about it -- hell, he even wrote a BOOK about it -- but to the public at large he's just another old man who shuffles when he walks with his cane or his walker, who stops and freezes when he comes to a doorway or a narrow passage or a change in the pattern on the floor, or a change from a level to a sloping surface. Just another old guy. Why bother. Old people are gonna die anyway. Except, I'm not old. I'm 55 years old. I've had this bastard of a disease since I was 45. And if this year is like any other, 50,000 Americans... many of them in their early 40s... will ALSO get this diagnosis. And in 3 years, 5 years, 10 years, YOU could look like this... OK, maybe not quite so chubby and with a bit more hair on your head. But you get the picture. And THAT is why you SHOULD CARE! If not for altruistic reasons, for SELFISH reasons. Don't wait for your dad or mom, your uncle or aunt, your brother or sister, your cousin, your SON or DAUGHTER for God's sake, to tell you, "The doctor says I have Parkinson's." CARE ABOUT IT NOW! Here's where you can get more info. 36
The National Parkinson Foundation The Michael J. Fox Foundation The American Parkinson's Disease Association The National Institute of Neurological Diseases and Stroke OH, POOH! NOT AGAIN! This is one of those things that's hard to write about, but since the purpose of this blog is to share my experiences with Parkinson's disease, if I only wrote about the nice stuff the blog wouldn't be worth much, now would it? So brace yourself. I'll be as euphemistic as possible. Gail and I were settling down to watch an "On Demand" movie. We were about 10 minutes into the movie when, without warning, I noticed I was... "Making Bigs." Now, this is not the sort of thing that you can really do without noticing it. So I said just about the only thing a person CAN say in a situation like that. "Uh-oh!" I made my way to the bathroom to assess the damage. Let's just say it was moderate. My brain eventually realized what my bottom was doing and managed to close the barn door after only SOME of the horses had gotten out. Unfortunately, some of those horses had made their way up the back of my Depends where they soiled my underpants and the shorts I was wearing. My shirt was spared.
I got everything all cleaned up, the unfortunate adult diaper was bagged and tossed into the trash, the soiled clothing was dropped into the wash, I put on a new Depends, new shorts, and some long pajama pants. I was a MESSY little baby. And just the other day, I was wondering if I really needed to keep spending money on these things as it has been quite some time since my last... Well... I guess they stay on the shopping list. I mean, if I would at LEAST get some kind of WARNING... Oh well. Them's the breaks. BEING “EXTREMELY” PATRIOTIC It's one of the more ridiculous polls I've ever seen on MSNBC or any other cable news network. Actually, it's a USA Today poll. Poll: More Americans „extremely patriotic' Nearly a third of Americans describe themselves as "extremely patriotic," and the number has been steadily on the rise since 1999, a new USA TODAY/Gallup Poll shows. As the nation heads into the Fourth of July weekend, 32% of Americans are feeling "extremely patriotic," up 6 percentage points from 2005 and 13 percentage points from 1999.
The poll finds that the biggest gains on the patriotic front are among Republicans, conservatives and seniors. The number of Republicans and conservatives who describe their patriotism as running high has increased 24 percentage points since 1999. Part of that increase may be driven by the Tea Party movement. As USA TODAY's Susan Page points out today, 85% of Tea Party followers describe themselves as extremely or very patriotic. No surprise there. But what do we mean by "patriotic"? You fly the flag on National Holidays? Empty gesture. You're telling your neighbors, who are also Americans, that YOU are American, too. You wear a flag pin? Empty gesture. Should your patriotism be judged by your actions, or by your choice of "bling"? You salute during the Pledge or the Anthem? Empty gesture. Anyone can do that, even cloistered Russian spies living among us in the suburbs. Or... Do you follow the news -- not the RNC press releases regurgitated by Fox News -- to develop your own sense of what's going on in America? That could be patriotic. Do you have a desire to "do so something" for folks in trouble? Folks harmed by the oil spill? Folks still recovering from Katrina? That could be patriotic. When your elderly neighbor is mowing her lawn on a hot day, do you offer to help? That could be patriotic.
Do you study the issues -- and THEN vote? That's VERY patriotic. So, what do we mean by "patriotic"? Is it "patriotic" to buy up a bunch of fireworks that are illegal in your state and shoot them off for the six nights BEFORE the 4th and the 8 nights AFTER? Or is that just the typically American "love of blowin' stuff up and scaring my dogs"? Is it "patriotic" to refer to your lawfully elected President with racist terminology? To call him a "socialist" when you don't even know what that word really means? To compare him to Hiltler? Stalin? To equate him with America's enemies? Is it "patriotic" to follow the "teachings" of Glenn Beck, to fear and hate and plot your revenge -- armed or otherwise -- against the lawfully elected government of the United States? Is it "patriotic" for a bloated, drug-abusing radio dimwit like Rush Limbaugh to insist that YOU protest on the streets to protect HIS wealth? Is it "patriotic" for well-dressed surburanites to throw money at a man with Parkinson's disease and demand that he seek a "handout" somewhere else? Is it "patriotic" for middle-aged to elderly white folks to gather at the Capitol, spit and hurl racist epithets at elected members of congress, demanding government "get their hands out of our health care" while insisting on increased Medicare benefits and Social Security? Is it "patriotic" for a candidate for congress to use poorly costumed actors representing Revolutionary War figures to presume that they would agree with your xenophobic, anti-tax, anti-immigrant, anti-everything 40
agenda and call for armed revolution, as in, "Gentlemen, GATHER YOUR ARMIES"? Is it "patriotic" to foment hatred against people of a different religion when this country was founded on the very basis of freedom of (and, therefore by logic, FROM) religion? Is it "patriotic" at a time when your taxes are at their lowest level since the Truman administration to scream about "high taxes" without being willing to sacrifice the things YOU like that the government pays for? Your Medicare? Your Social Security? Is it "patriotic" to call the unemployed "lazy" and "spoiled" after the previous administration's economic policies nearly caused a new Great Depression? Is it "patriotic" to say that your country was founded by a Christian God who is losing patience with our "wicked ways" and that AIDS, Katrina, 9/11 and now the oil spill are his "judgment" for our not being Jesus-y enough?" Is it "patriotic" to twist the words of our nation's founders to make them appear to be fundamentalist Christians when, in fact, so many of them were anything but? Is it "patriotic" to say that the war in Afghanistan is "a war of Obama's choosing" that "America did not want to prosecute" even though the war was started in the days after 9/11 by President Bush, who abandoned the war to chase after ghost WMDs in Iraq so he could "show up" his daddy by getting rid of Hussein? Is it "patriotic" to gather in the Capitol Mall in DC and demand of others that they "take their country back" from
the lawfully elected government -- by armed force if necessary? It seems very odd to me that so many Republican and Tea Party activists refer to themselves as "extremely patriotic" when, in fact, their words, their signs, their actions demonstrate a hatred for this country, its democracy, its legally-elected government. Is this just more "newspeak" ala Orwell's "1984" where "Treason" is redefined as "Extreme Patriotism"? I guess it all depends on who gets to write the history books of the future. If the Texas Board of Education gives us any clue of how that will go... "patriotic" Americans should be trembling with rage at the thought. WE GET LETTERS Seems like I'm getting comments from all over the place... mostly on my Facebook account, but some here on the blog. About my entry from yesterday, "Oh, Pooh! Not Again!" we hear from my Facebook pal and former XM Satellite Radio colleague, Dave. I wish I could unread that. But if it is any consolation, three times in my adult life I have made dirties in my pants. And I have no excuse. I was not drunk, not suffering from a fit if lactose intolerance, or anything of the sorts. I simply went to break a little wind and apparently pushed a bit too hard. Oh, can you send me the link to buy your books? I accidentally cleaned out my messages and your link went away like a soiled adult diaper. 42
My most excellent pal Ben was just as sympathetic to my plight. "Making Bigs." Bill...I'm not gonna lie to you. Maybe I'm just a jerk but my first reaction to this story was complete full-body laughter. We go way back and I'm sorry to betray you as a friend by laughing at such a sensitive matter. Please accept my apologies... And I'm not even gonna ANSWER my friend and committed conservative Andy, who asked... Does this make you an old poop? Everyone's a comedian. About my first review of the new Podiobook version of "No Doorway Wide Enough," we hear from Shantie -from across the pond! Totally enjoyed this audio book "No Doorway Wide Enough" It is not just interesting and informative, it is also very entertaining with Bill's sense of humour. I bought the book too. It is nice to listen to the audio as Bill makes it so alive. I would recommend this audio and the book also especially that it is helping raise money for research. Well done Bill and thank you.
You can tell she's from the UK because of her funny spelling! :) My pal and former XM Satellite Radio colleague, Matt, shared the following after reading my piece, "You Never Miss the Dopamine Until the Brain Runs Dry." "I mean, Jesus! Who wants to read a downer book like THAT when there are Vampire/Werewolf movies and Harry Potter and self-help books about how you can stop dating the wrong kind of man out there?" I'm afraid despite the subject matter of rejection I'm still laughing at this line. You are a gifted writer, Bill. Keep doing it til the well runs dry (or the dopamine does) I saw a book yesterday at Borders on "Gay Astrology"..... You are right. No one wants to hear about what they themselves might just experience in the future. I had 2 near death experiences in the 90s, and it changed my life forever. I now know that our "personalities" survive death. I know this for certain, yet, I alienated my blood family and had a whole bunch of friends go "koo-koo" "Koo-koo..." and keep their distance after I told my story. So I know fully well that people just flat out don't give a crap about important stuff like life and death.
That being said, there is a passage concerning "enlightenment" in the Bhagavad Gita....basically stating that karma yoga is doing the work with full intent, interest, and enthusiasm, but not being attached to the outcome. Please consider this in your work. What you are doing is very valuable, though at this time through other peoples indifference it seems not to be. No matter. Keep slogging through, Bill. Keep slogging through. Unfortunately, fools like me are out of work, so I had to go the cheap route and download your book. I still have to get your audiobook, though intend to....so even I'm a schmuck.... I hope life becomes a bit more gentle with you as the process unfolds, or at least gives you the wisdom of experience. . . and you write about it and leave it for selfish indifferent humanity. much love, matt It's good to have friends! REACHING OUT TO WASILLA You know me. I am NOTHING if not a person who believes in bridging gaps, reaching out, trying to find common ground and bringing people together. That's 45
why I was so THRILLED when checking my blog stats earlier today to see that I have a BLOG READER in WASILLA, ALASKA! I could do a thorough search of IP addresses and all that, see how often this person dropped in, or if it was just a one-time thing and that person shrieked in horror and quickly changed screens... but I choose to take a positive tack here. So this message is directed to my Wasilla Reader. Please. Contact me. Use the "Contact Me" link at the top of the page. You don't have to ID yourself if you think it will compromise you. Just give me some inkling of what you do and whether or not you are connected in any way with the Palins or the Johnstons or any of the other stuff that has emanated from your little community. YOU COULD BE MY SPECIAL WASILLA CORRESPONDENT! I will give you full author rights to my blog, you can write whatever you want, whenever you want! I get final edit, of course, cuz it's MY BLOG, but we could start something BIG here. There's so much misinformation in the "Lamestream Media" (chuckle) about what goes on up there. YOU can set us STRAIGHT! YOU can give us the SKINNY! YOU can let us know what's REALLY going on. And if this is SARAH or someone CONNECTED to the Palins, here's your opportunity to STAY UNDER COVER and DISH!!! This is a one-time offer, unless, of course, I offer it again. But don't miss out on this opportunity to SHARE YOUR LITTLE TOWN WITH THE WORLD.
YOU can show us Wasilla in a way we've never seen it. Won't you please, oh, WON'T you please... PLEASE won't you be my Wasilla Correspondent? STUDIES THAT MAKE YOU SAY "DUH?" Sometimes I'll stumble across one of these Parkinson's disease studies, and my first reaction will be, "Duh? You didn't, like, KNOW that? From LOOKING?" This one for instance. (http://www.prdjournal.com/article/PIIS135380200900306X/abstract?rss =yes) A study on the impact and factors associated with drooling and Parkinson's disease. Guess what they came up with as a conclusion? PD droolers had worse quality of life and had more difficulty speaking, eating and socially interacting compared to PD non-droolers. DUH! Do you know a drooler who ENJOYS drooling? Did they think it was EASIER to talk when you've got a mouthful of saliva? Did they think EATING might just be a LITTLE easier with a yap full of drool? And social interactions? Margaret, PLEASE!
"Oh, hello Mabel. (Slurp!) That's a lovely dress you're wearing. (Sluuuuurp!) Oh, the bib? (Drool.) Whoops! Some got away that time. (Slurrrrrp!) Well, I guess that answered the question for you, didn't it? (Slurrrrrp.) So, what's the plan? (Awwwwk.... hawwwwwwk..... gag.... guh!) Sorry, A little went down the wrong way. (Slup.) What do you say we go get some corn on the cob? (Slurrrrrrrrrrp!)" I'm sure there must be something I'm missing here, some deep scientific THING they needed to determine in this study, but the results just kinda floored me. I drooled in public one time, I mean REALLY drooled, bent over and had a string of saliva slip from my lips to the mall floor. I was humiliated. Seems by using common sense we could save quite a bit of research money. But that's just me, I guess. IS SOMEONE BEATING ME WHILE I SLEEP? "What's gonna hurt NEXT," is a question I suppose I could start asking myself each night when I go to bed. I remember being told that Parkinson's disease was not a painful disease, and by and large it is not. But then you get something like the "frozen shoulder" I had before physical therapy (which still hurts to move, but at least it ain't frozen no more...). And then, Friday I'm hobbling around on a right hip that felt like someone kicked me and gave me a hip pointer. This morning, the hip is fine! It's my RIBS that hurt. I must have been sleeping in some sort of scrunched up
position last night because the ligaments connecting my ribs to my sternum are aching with each movement, and my right neurostimulator implanted under my collar bone is painful to touch. AND, there's a spot on the ulnar side of my right forearm that feels like I whacked an iron bar with my arm. Ibuprofen is taking some of the edge off. The Parkinson's drugs? They do nothing for the pain. Not that I'm complaining, mind you... Oh, wait. Yes I am! A GLIMPSE INTO THE PAST My sister, Becki, posted this photo on her Facebook page not long ago.
Becki said she got it from Mom, and it was apparently published some years ago in the Clinton Herald â€” back when it was an actual newspaper. This was taken in 49
1914 in my Grandfather‘s back yard on the north end of Clinton, Iowa — back when it was a town unto itself, Lyons, Iowa. We have good reason to believe that Grandpa purchased the property from Elijah Buell, the fellow who basically founded the city. And it looks like a bunch of good friends posing with some good beer — and either a child or a midget. (I showed the picture to my stepson, T.J. He said, ―There‘s proof that, even way back then, there was nothing to do in Clinton, Iowa.‖ Can you guess which of these guys is my grandfather? That‘s him, 5th from the left. This was taken, I believe, before he married my grandmother. It was 14 years before my father was born. That fellow, second from the right? That‘s my grandpa‘s half brother, Fred Gerhardt. My Uncle Freddie. Notice one thing about him? He has no eyes. I never knew my grandpa. He died in 1945, 10 years before I was born. I knew and loved my Uncle Fred. He was a great old guy who lived about 6 blocks north of where this photo was taken. When we were kids and we‘d visit Granny, sometimes we‘d all stroll up to Uncle Fred‘s house to pass the afternoon. There was no running water in his house. He had a pump and an outhouse in his yard. He killed himself with a rifle shot to the chest in the late 70s. This part of the story is fictionalized in my book, ―Hunky Dunk.‖ If the ancestral Klempers were poor farmers, they were friggin‟ “Old MacDonald” compared to Grandpa Johan. He couldn‟t grow grass! Now, whether or not he 50
was actually booted off the farm or decided by himself to move to the city depends on which version of the story you believe – the story about how he either accidentally or on purpose blinded his brother Friedrich. If you believe the “nice Grandpa” story, then you believe that he was just cutting shoelaces out of a strap of leather when Uncle Friedrich came up behind him to see what he was doing and caught the blade of Grandpa‟s buck knife in the left eye. In the “bad Grandpa” story, he just jabs the blade in his brother‟s eye because he didn‟t like the way Friedrich was looking at him. Well, they didn‟t have the Blue Cross or those HMOs back then, so the family just sort of let the eye take care of itself – which was admittedly a bad idea since the stabbed eye started to smell bad and the infection spread from the bad eye to the good eye and both eventually had to come out. And here‟s a side note. Don‟t go feeling too bad about Uncle Friedrich. For one thing, he outlived Grandpa by about thirty years. And he had a pretty good life for a blind guy. The government bought him a nice little house up the road on Garfield Street with an outhouse and a water pump in the front yard. And Friedrich learned how to make do. I remember sitting on his side porch with him, watching him pick off mud ducks on the nearby lagoon with a .22 rifle. Honest to God! He could sight them in by sound alone and pick „em off with a single shot! He lived to a ripe old age until one day he shot himself through the heart with that same .22 rifle. Grandma Genny said it was an accident. He was
cleaning the rifle and it went off. But Jake and me, we think he just got tired of waking up every day. The actual story is that Fred and Grandpa John were playing bows and arrows or something, and a stick went into Fred‘s eye. The part about the family just sorta taking a ―wait and see‖ attitude and the infection spreading to both eyes is true. And he could, honest to God, pick off mud ducks with a single shot just by honing in on their quacking. But back to my Grandpa. Here‘s how that house looks now.
That‘s my sister-in-law, Kerri, doing something on the front porch. That one story portion you see on the left… that was the whole house when my Grandpa bought it. When he married Granny, he added on the two-story brick structure on the right. 52
Granny lived there until she died in 1988. Then my brother Jack and his wife took possession. Jack died in 2008, so now Kerri is the keeper of the old family homestead. Long may it stay in the Schmalfeldt family! GREAT SLEEP MESSES UP MY BLOGGING I've had about a week of great sleep at night. And it's messing with my blogging. I take 5mg of Ambien and 20 mg of Klonopin before bedtime. It helps me get to and stay asleep. It does nothing for the vivid dreaming, which has led to some of of my more interesting blog entries. Night before last, I recall dreaming. And I recall THINKING in my dream, "Wow! This is gonna make a GREAT blog entry!" Then when I woke up... I FORGOT WHAT THE DREAM WAS!!! Last night, I did SOMETHING that caused me to snap myself awake at about 3:05 am. I know this, cuz I sat up and looked at my alarm clock. At the TIME I knew what it was that caused me to wake up. But now? Damned if I know!
I do have vague recollections of a later dream this morning. Another Navy dream where I and a group of others were supposed to report to our base, but I kept leaving my ID card at home, so I'd go home to get it, get distracted by something, drive back out to the base and realize I still did not have my ID card. Hardly the most entertaining. Don't get me wrong. I wouldn't trade a good night's sleep for a dream directed by Stephen Spielberg! The Ambien and Klonopin are doing their job, and I'm no longer yelling, slapping myself, kicking, punching and rearranging my blankets at night. I sleep like a baby. And it's making for some BORING blogging! I'M A BIG BOY NOW! Gail and I just got back from our midday runabout. It's been so freakin' hot lately that neither one of us really wanted to go out or do anything, but it's only 86 now, so what the hell. Went to the mailbox first. Then, I wanted a bottle of brandy. (On the Simpsons last night, Mr. Burns was clutching a glass of brandy. It made me want a glass of brandy. I am an easilyinfluenced person.)
Then we went to the grocery store. I got some chicken, Gail got some healthy stuff. And as we were walking out to the car, Gail noticed I was taking little teeny steps. "Are you taking BIG BOY steps?" she asked. Right there, I froze. Thinking about what's involved in "Big Boy steps" totally confused my midbrain and we ground to a halt. Gail took my right arm, and I started extending my stride. Then she noticed I was looking at my feet when I was walking. "Nuh-uh! No looking at your feet. Look up!" she demanded. "So much to think about," I whined. See, the things you HUMANS do without even thinking about it, WE of the PARKINSONIAN race have to actually consider each action involved in a movement. We got back into the car, and Gail said, "If you wanna have Big Boy Juice (meaning the brandy), ya gotta take Big Boy Steps!" And she's right. Hopefully the day may come when I can start wearing Big Boy underpants again, too! CHANGING MY MIND ABOUT â€œGROUP BLAMEâ€? I've been giving it a lot of thought in the last day since I wrote my piece on the folly of blaming ALL Muslims as a group for the actions of a few, which is what so many Americans are doing with their disapproval of a
Community Center two blocks from the former WTC site. I agree that there are times when the actions of SOME in a group reflect badly on the group as a whole. And unless that group comes out and LOUDLY and REPEATEDLY rejects the actions of that few in the group, then perhaps we SHOULD hold the entire group responsible. Their act of omission in the condemnation of the terror, the violence, the deaths caused by small numbers of their community can be construed, if one wishes to do so, as a silent endorsement of it. Therefore, I ask planning and zoning commissioners everywherePleaseNo more building permits for Southern Baptist Churches. Think of how many innocent lives were snuffed out by members of the Ku Klux Klan over the years. They've blown up and set fire to churches! CHRISTIAN churches! They've murdered children! They've snatched men off the streets and hanged them from light poles. Since most of these so called "Klansmen" declared themselves "Southern" and "Christian," there were a number of them who were no doubt members of the Southern Baptist Church! 56
And what has the leadership of the Southern Baptist Church had to say about all this? Have they condemned the ritual murder and torture of all the Klan deems as "inferior" and "unAmerican"? In other words, "infidels?" What are the families of Viola Liuzzo, killed by Klan members on the road back to Selma, Ala., and Col. Lemuel Penn, killed by the Klan on the highway near Athens, Ga., supposed to think when THEY see a Southern Baptist Church being built near THEIR homes, near THEIR schools? What are the survivors of the Birmingham Church Bombings supposed to FEEL when Southern Baptists build their SCHOOLS and COMMUNITY CENTERS in the SAME TOWNS where their murderous Klan members KILLED so many innocents? And they MURDER in the name of JESUS! Part of their UNIFORM is a CROSS with a drop of blood in it. They BURN the cross thinking that the flaming light of JESUS shows them the way towards murder and torture and terrorizing of African Americans and Jews and Catholics and ANYONE who they deem impure. And it's not just morons in sheets any more. They wear cammies and gather in the southern woods to train in weaponry and murder. They wait for the day when they work up the courage to launch an overthrow of the lawfully elected government of the United States. And the election of the first African American President has made them crazy with rage! And now they want to let HOMOS get MARRIED??? THIS WILL NOT STAND, the Klan says. An UNTOLD NUMBER of murders and beatings and burnings and hangings, all done in the name of their 57
White Christian Lord and in the name of a White Christian Nation? And where is the head of the Southern Baptist Church? Why is he not on Fox TV EVERY DAY to condemn this? So, I've changed my mind. As long as otherwise reasonable Americans call for the banning of a Muslim community center because 19 alleged Muslims (who were roundly condemned by the American Islamic community, murdered around 3,000 people in one day) then I must stand firm in MY demand that there be NO MORE SOUTHERN BAPTIST CHURCHES, since so many of Southern Baptist members of the KKK that have murdered so many people over so many years in the name of THEIR religion continue to rest in the accepting bosom of their community. And as long as we're doing the good AMERICAN thing by banning things that might OFFEND the VICTIMS of that thing: Do you realize how many people are killed by CARS every year? How are the families of car fatalities supposed to feel when a car dealership opens near their homes, or near the graveyard where their loved ones rest? And no more tobacco stores. Thousand upon thousands of people die each year because of tobacco consumption. SEVERAL times more than were killed by Islamic fanatics on 9/11. What is the family member of a cancer victim supposed to feel when they see a cigarette display in a convenience store? And alcohol stores? BAN THEM OUTRIGHT! Thousands and Millions of Americans have died from the affects of alcohol, either directly or indirectly. Hold them ALL accountable. 58
Better yet! Let's all pray for a global pandemic, and let God sort the good from the evil. That'll show us! THIS, THAT AND THE OTHER Just a few minor thoughts, observations and comments today. 1. There's something in the RSS Feed about Parkinson's disease in the middle column of my home page, about halfway down, about "MCI" or "minor cognitive impairment" -- which seems to be a precursor to Parkinson's Disease Dementia. Earlier today, leaving the bedroom and heading for the shower, I saw a big, black bug for a fleeting second on the door jamb in the bedroom. It quickly vanished as I looked at it directly. Yesterday, something furry poked out between the couch and chair... both dogs were asleep at Gail's feet, so it weren't them. Today, I gets an e-mail from a colleague asking me to call an 800-number to record something on a draft she sent, but she asked me to review the draft first. I did and made comments and responded to her e-mail. She wrote back that she hadn't received the file yet. I thought she was talking about the file I would create by calling the 800 number. I FORGOT ABOUT THE DOCUMENT I HAD EDITED. I apologized and sent it to her just now. 2. My Mom went for about five days thinking I was mad at her. She sent a card with a very nice note telling me not to give up and to hang in there and not be like my 59
brother Bob who just gave up and let his condition take him over. I took the note for what it was... but the more Muz thought about it (she thinks about stuff a lot), the more she thought I was mad at her. So she called me yesterday and asked if I was done being mad at her yet. I assured her the last time I was mad at her was when I was 12 and she wouldn't let me buy a Suzy-Q at the store. Mommies can be silly! 3. As disappointed as I am that only 25 people have bothered to subscribe to my Podiobooks version of "No Doorway Wide Enough," I'm getting close to being finished with it. And I'm having fun recording my Podiobooks version of "Undercover Trucker" which I'll submit as soon as I'm done with "Doorway." If you're haven't read "Doorway" or are scared to because you think it's all gross and icky and sad, then you have no idea what you're missing. It's a fun book, and who knows.... ya might learn sumthin'. 4. Gotta stop drinking. Altogether. Immediately. Didn't realize I was rolling the dice. But I have been. I don't drink a lot. Two glasses of wine a night. On a weekend, perhaps three. After "seeing" the bug this morning, I did a search about Klonopin and Alcohol. Here's what I found about my nightly 2mg of clonazepam. Drinking alcohol while on Klonopin can increase the risk of some side effects caused by Klonopin. These side effects include drowsiness, dizziness, unusual behavior, memory problems, and co-ordination problems. The heart rate and breathing rate can slow down due to the combination of Klonopin and alcohol. 60
This situation can cause you to pass out and have difficulty breathing. It may even lead to death. Your body and mind can be more sensitive to alcoholic effects when you take it along with Klonopin. When you take Klonopin with alcohol, you may not be able to drink your usual amounts of alcohol, as it is not safe for you. Therefore, if your temptation to drink more overcomes your fear of danger, it can lead you to a disastrous situation. Uh huh. And what about my nightly 5mg of Ambien? Do not drink alcohol while you are taking this medication. It can increase some of the side effects of Ambien, including drowsiness. Oh kaaaayyyyyyy... about about my Zoloft and alcohol? As per Pfizer, Zoloft did not increase cognitive or psychomotor effects with alcohol. However, it is strongly advised that alcohol is not recommended with the use of Zoloft. Mmmm hmm. Any problems with my Metoprolol (blood pressure)? Metoprolol may impair your thinking or reactions. Be careful if you drive or do anything that requires you to be alert. Drinking alcohol can increase certain side effects of metoprolol.
I see. How about my Lisinopril (also for blood pressure)? Avoid drinking alcohol. It can further lower your blood pressure and may increase some of the side effects of lisinopril. All righty. Any worries about my Stalevo and booze? Do not drink alcohol or use medicines that may cause drowsiness (eg, sleep aids, muscle relaxers) while you are using Stalevo; it may add to their effects. Well, that just about covers it. All my meds advise laying off the "big boy juice." Most say it could make side effects worse. One says it could kill me. And since I don't want to surprise my wife by waking up dead one of these mornings, I see what my choice has to be. One glass of V-8 Fusion, please! And put it in a dirty glass! DYSTONIA, THOU ART A CRUEL AFFLICTION! OK, so I'm in bed last night. Gail is sitting up with Shiloh because there's supposed to be a line of thunderstorms coming through. (There wasn't a SINGLE clap of thunder, bolt of lightning and only a little rain, but my brave German shepherd freaks out during storms. She's so VERY brave.) Raven is in the bed with me. She is generally made of sterner stuff. (Although she will hide behind my chair if
a storm comes during the day.) But she's at the foot of my bed, panting heavily -- and I have an attack of dystonia -- the cruel twisting of muscles that sometimes accompanies Parkinson's disease. My neck and back had been cramping since earlier in the evening. My left foot wanted to make like a parrot claw and grab a perch. My right calf wanted to ball up and clench. And I had a 70 lb. dog at the foot of my bed, making it difficult to get down there and rub the cramps out. Raven eventually wearied of my fidgeting about and got up to lay on the floor. I was able to rub some of the cramping out, and if I lay perfectly still, everything was fine. But as soon as I would move one leg or the other, the cramping would start again. The last three toes on my left foot, my whole right calf. I finally got to sleep. When I tried to sit up to get out of bed at 6:30 this morning, the right calf remembered it's supposed to be cramping and balled up. But only until I was on my feet. Everything's fine now. We'll see how I hold up when I get out of this chair to go do my "big boy walk" and balance exercises. THE EXTRA STALEVO HELPS, BUT OY! THE DREAMS! That extra Stalevo 100 at bedtime really helps with the cramps. But MAN, did I have a weird dream! My first wife had died. She was working in a lumber yard and she had a forklift drop a load of 2x4's on her.
Thing is, she had already been buried when I arrived in whatever town this was to attend her memorial service. My dead twin brother Bob was there, too. We went to the lumber yard, and HE had a bunch of 2x4's dropped on HIM by a forklift. He survived, but had quite a headache. Then I looked behind me and saw a forklift with a huge number of 2x4's on it just over my head. They started to drop them and I began running for the edge of the building, thinking "these are the last moments of my life." They just grazed me and tore my clothes a bit. We went to, I think it was, some kind of fancy restaurant for the memorial service. Everyone's hugging me, telling me how brave I was being and how sorry they were for my loss. There was one chubby, older lady with gray, curly hair who hugged me and I noticed she had a little heart with the word "Avon" on it on her neck. It looked like it would be a necklace, but it was implanted directly in the middle of her chubby little throat. Then it was time to go to the cemetery. We had to wade through knee deep water to get to it. "I'm sure she won't mind that we had to get our pants legs wet to come see her," I said. I could see the freshly turned dirt where her grave was... And then I woke up. Levodopa does encourage the vivid dreams that, in and of themselves, are a part of Parkinson's disease. Now that I'm taking one at bedtime, I image there will be a lot more of this. According to the medical source information about Stalevo 100:
Psychiatric side effects have included reports of psychotic episodes (including delusions, hallucinations, and paranoid ideation), agitation, anxiety, confusion, dream abnormalities including nightmares, depression (with or without development of suicidal tendencies), somnolence, and dementia. Fine. Just as long as the damned cramps stop! WHAT A PAIN IN THE ASS! ...and I mean that literally. Right now, I feel like the Belle of the Ball at the Gomorrah State Prison Debutante Cotillion and Coming-Out Dance Social. (I was the most popular girl at the party!) There's a reason for this. Parkinson's disease causes constipation. Some of the medications used to treat Parkinson's disease cause constipation. I always thought the official definition of constipation was "fewer than 3 movements per week." 'Taint so, McGee! (http://wichita.kumc.edu/hastings/constipation.pdf)
The Modified Rome Criteria defines constipation as = 2 of the following criteria present for =12 weeks during the last 12 months: Fewer than 3 stools per week Straining in 25% or more of defecations Lumpy or hard stools at least 25% of the time.
Sense of anorectal obstruction or blockage at least 25% of the time. Use of digital extraction or transvaginal pressure to assist evacuation. If it's in bold italic, I GOTS DAT! (That 5th one... there was ONE time I hadda go in there and... well, never mind.) As I mentioned in a blog entry some time ago, I "make bigs" practically every morning. But the end result is reminiscent of the Daniel Day Lewis epic film...
There Will Be Blood. Here's why. There are three muscles that have to relax in order for there to be a smooth transit of what those of us in the scientific community refer to as "the poopy" from the body to the potty. In Parkinson's, ONE of those muscles relaxes. The other two do not -- in fact, they tighten! This forces "the poopy" to FIGHT its way out of its confinement like a drunk sailor in a bar surrounded by Shore Patrol. Like the unfortunate drunken sailor, there is generally some bleeding when the whole affair is over with. In Parkinsonâ€&#x;s Disease, involuntary rigidity afflicts striated muscle throughout the body including the muscles of defecation. Consti-pation occurs in 2/3 of patients. The internal anal sphincter relaxes normally during rectal wall distention, but this normal response is masked by an intense, prolonged, delayed spasm of the
external anal sphincter and the puborectalis muscle. Treatment is complicated by the constipating effects of the anticholinergic drugs used to treat the disease, as well as the frequent development of autonomic insufficiency. The key here, it would seem, would be to consume bulk laxatives like Metamucil, therefore rendering the aforementioned "poopy" into a softer, fluffier mass that WON'T rip its way out of my body like the Incredible Hulk through a police station wall. We'll give that a try and see what happens. DREAM A LITTLE DREAM WITH ME Last night was a night for weird, disjointed dreams that seemed to follow no real logical storyline... but here we go, what I can remember, anyway. We were kids, I guess. My dead father sent my little brother Joe and me down to a gas station on Pershing and Main Avenue in Clinton to keep an eye on his car overnight. His car was in the shop to be fixed. Across the street at Snack Harbor, which hasn't been there since, I guess, sometime in the 1970s, there was a body in the parking lot and the cops were all over it. I told Joe to stay in the garage while I went over to take a look, but the cops wouldn't let me get close to it. Then a girl I knew from junior high school (who never actually existed, I couldn't tell you who she was) came by to tell me that she had always liked me and wanted to be my girlfriend. And her mom owned a radio station in town that nobody had ever heard of. Actually her Mom 67
was her sister, as she was being raised by her grandmother. Suddenly it was daytime, and we were down on Second Street in Clinton, Iowa, where Machael Oil used to be. There was a little sheet metal trailer there with a radio antenna on the outside. I asked "my girlfriend's" mom if I could have a job, and she said no because all they play is Spanish and Hindu music. But then she relented, saying I could do a few hours of classic rock every day. I went into the studio and it was a mess. There was junk and equipment laying everywhere. And there was this Hare Krishna looking guy running what passed for the control board. He began showing me the equipment, when I remembered I left Joe at the garage and went back for him. Now it was night time again. The body in the Snack Harbor parking lot was gone, but there was a series of blue circles on the pavement showing where it had been. I went back into the garage and the morning staff was beginning to show up. Joe and I were hungry and wanted to get a donut or something from the station's convenience store, but they had no convenience store. Dad showed up, and now his car was a shiny, big airplane. He offered us a ride home, but I said I wanted to get something to eat, and it looked like the lights were on over at Snack Harbor. Joe went with him, and I crossed the street. But by the time I got there, the lights were out and they were closed. Suddenly, it was night again and I was camping on a beach. I saw some folks walking toward me in the dark, I think they may have been park custodians or something like that. I hollered at them and told them I was there in 68
the dark, and that I camped out on this beach all the time. Then I remembered my new girlfriend, and that I hadn't talked to her in awhile. I took out my cell phone and tried to find her in my list of contacts. That's when I woke up. Ah, that nighttime Stalevo is gonna make for some INTERESTING morning blog posts! Now, to make the coffee! ALONG CAME A SPIDER Got a little girl in your family, 8-13 years old? Scared of spiders? Do we have a medical study for YOU! According to an article on Reuters, a university in Austria (not Australia — that‘s the place with Kangaroos. Austria is where Hitler came from. Big difference.) wants to SCARE your little girl! With SPIDERS! So they can study her BRAIN! This sounds uniquely Germanic, if you ask me. The girls will be shown pictures of the eight-legged crawlers and their brainwaves will be registered. They will also undergo free fear therapy with specialists. The researchers hope the results will help them develop their phobia treatments. “Spiders provoke revulsion for many people and even set off fearful panic. Girls in particular are frequently affected,” the university said. I can imagine…
“Vat‟s der matter, meine kleine liebchen? Iss you afraid? Afraid uff der SPIDER?” And they show a tarantula eating a bird on the screen. “Oh, don‟t vorry, kleine madchen. Dere are no spiders here. Except for maybe… IN DIS BOX?” And he holds out a box containing a picture of a tarantula eating a little girl.
“Oh, ho, ho! You haff dampened yourself, meine fraulein! Zere is extra PUNISHMENT for dat! Mit SPIDERS!” And she‘s dropped down a trap door into a room filled with spiders as they measure her brainwaves until they flatline. “Und dat iss how ve learn about der fear uff der spiders,” the scientist said. 70
No word on whether girls must provide their own tuffets, or if curds and whey will be provided. WAS IT SUPPOSED TO BE THERE? Why was there a penguin in our motel room? Good question. I'll get back to it. Now, I don't know if this is a result of that newly added Stalevo 100 each day, making 4 instead of 3 for my daily intake, but last couple nights I've found it harder to get to and stay asleep. And when I AM sleeping, woo-hoo! The dreams! This morning I was on a trip with my dead brother Bob and his widow Lori. We stopped at what seemed to be a motel that caters to business conferences. At first it looked like Bob and I were going to have to sleep in the same bed, but then it turned out there were enough beds for everyone. (For some reason, Lori kept popping in and out of this dream.) Much of this is disjointed and fragmentary, but I recall being down near the lobby with a bunch of businesslooking people wandering to and fro and seeing Bob standing there naked. Lori dragged him back to the room to get come clothes on him. I went back to the room as well and looked out the window. There was a little fuzzy penguin walking around the parking lot. I told Bob and Lori that I remembered this particular penguin from a previous visit to this motel. I opened the window, and the little penguin came running right up to it and jumped into our room so I could pet it and ruffle up its feathers. 71
Next I can remember, I'm back in the hallway and Lori wants to show me a new suit coat she got for Bob. It's horribly large. It goes all the way down to his feet. I said, "It makes you look like you don't have legs." And that's when I woke up. I still have some leftover Sinemet 25/100 from before I switched to the Stalevo. I think I'll try taking that tonight instead of the Stalevo and see if it makes any difference. I started taking the extra Stalevo to deal with the Parkinson's disease-related night time cramps, and by and large it has... the little ones I get in my neck and back and feet and hands, but I had a WHOPPER of a right calf cramp at around 1 this morning, so I'm not sure what the efficacy is at this point. DO I STILL LOOK LIKE ME? With Alzheimer's disease, the patient often stops recognizing family. "With Parkinson's, it's like the family doesn't recognize [the patient] anymore," says Thomas Montine, a neuro-pathologist who heads the Parkinson's disease research center at the University of Washington in Seattle. That puts is about as well as I've ever seen it put! This comes from VERY interesting article in the Wall St. Journal Online. The subject: "How Parkinson's Disease Alters the Brain." (http://online.wsj.com/article/SB10001424052748703748904575411662795000790.htm l?mod=googlenews_wsj#articleTabs%3Dcomments)
Unlike with Alzheimer's and other dementias, patients with Parkinson's don't lose their memory. Instead, they may develop trouble with planning, making decisions and controlling their emotions, and often exhibit changes in personality as a result. About onethird to one-half of Parkinson's sufferers exhibit some signs of cognitive impairment at the time they are diagnosed, but over time virtually all patients will experience substantial cognitive decline. All I really have to go by is Gail... and she says she hasn't noticed much change in me, personality-wise. She has noticed I am more emotional, moodier, and have trouble with planning and decision-making. If she had been in charge of the finances, I would not have spent as much money I did just to print a book that very few of you are interested in buying -- even though the proceeds go to help fund the search for a cure. (Just in case, it's still available... and 100% of proceeds go to PD research... but if you wanted one you would have likely gotten one by now.) So, I've had deep brain stimulation, I've increased the amount of levodopa I take every day. Why isn't THAT helping? The motor symptoms of Parkinson's appear to be caused by decreased amounts of dopamine. Medicines like the generic drug l-dopa that boost dopamine can improve motor symptoms. Dopamine is also decreased in areas of the brain responsible for cognition, but dopamine-boosting drugs don't seem to work on cognition. 73
So, what is to be done about all this? Biochemistry professor Richard Palmiter showed in published work that mice that lack the ability to produce any dopamine can't do even simple cognitive tasks, such as getting through a complicated maze. Next, he will examine the cognitive effects of turning off the production of dopaminergic neurons in certain brain regions in mice that have the neurons intact. In order to turn dopamine production off and on, he will borrow a virus from a dog to transport a gene in the brain cells that will interrupt the ability to make the chemical. With this experiment, Dr. Palmiter hopes to determine whether it's the amount of dopamine in the brain or the lack of dopaminergic neurons that affects cognition in Parkinson's patients. While there are limits to what can be gleaned from such animal studies, the findings should provide insight into how critical it is in treating the disease to keep the neurons from dying, rather than just boosting dopamine in the brain, according to Dr. Palmiter. It is so unusual to see such a well-written article about such a misunderstood disease. Kudos to Journal writer Shirley S. Wang. Now... if we could only get people to CARE about it.
BOOP BOOP A DOOP! Why was I sharing a room with Betty Boop? We'll explore that in a moment. But first... As I told Dr. Grill yesterday, the vivid dreams I was having as a consequence of the extra levodopa wasn't the problem I wanted to address. I wanted to go to sleep and stay asleep, and that's why I wondered if an extra 5mg of Ambien would do the trick. Dr. Grill suggested taking that last Stalevo 100 of the day a few hours before bedtime instead of prescribing extra Ambien. So, I did. And I slept like a log. Stayed asleep, too. Didn't do much about the dreaming, but like I said, it makes for some interesting blogging. Like how last night I was sharing the house I grew up in as a kid with Betty Boop. I was a grown up, and it doesn't appear there was anything sexual going on. We were just roommates. She had everything all "girled" up with feather boas and glitter and sparkly lights and such. Betty was watching an old movie on our old Philco TV, and I was tired. So I went upstairs to the bedroom I had when I was a kid and there were two beds there. I 75
searched the walls for evidence of my past life there. (When we were kids, we wrote on the sheetrock walls of this bedroom. Usually just stuff like the current date so whoever discovered this house from whatever planet years from now would know we were there.) I could see some evidence of writing on the walls, but she had the whole damned room so "girlified" with garlands and Christmas lights and glitter I just couldn't make it out. I got in bed and laid there not sleeping, then I heard her coming up the stairs. I went to look and could see her curly, black hair as she climbed the stairs... And then I woke up. Betty Boop? I've never really given her that much thought, except for when I was a kid. She was animated by the same folks who did the old Popeye cartoons, and I thought that she would have been a MUCH better girlfriend for Popeye than the beanpole Olive Oyl... woulda made shore leave a lot more entertaining, I tell ya what... A FEW THOUGHTS ABOUT GLENN BECK AND SARAH PALIN AND THE SCAM THEYâ€™RE PULLING ON THE POOR FOLKS 1. Why do Glenn Beck and Sarah Palin think America is without "honor"? How do you "restore" something you already HAVE? All I ever hear is teabaggers whining about Obama "apologizing" for America, and here THEY were, saying it was time to "restore America's honor"! I don't blame Beck all that much because he is a selfadmitted circus clown with a bigger following than Bozo 76
ever had. But the former half-Governor of Alaska? If YOU don't think America has honor, honey, then I'm going to have to ask you to tell Todd to meet me outside, RIGHT NOW for a little history lesson! In the upcoming movie version, Sarah and Glenn share a private backstage moment.
2. All kidding aside, Beck's "Elmer Gantry" impersonation today was EXCELLENT! SPOT ON! I can't wait to see what happens when he gets caught with a nekkid Shirley Jones. 3. Can anyone ELSE see Sarah Palin's disdain for America's honor and intelligence from their front porch? I can. 4. As you might imagine, I've gotten my share of "hate tweets" from people who BELIEVE Beck's little carny
sideshow is REAL. One character who calls himself Johnny Swift or "@Obamadefense" chuckled, "Isn't all this Christian imagery at the 8/28 rally dismaying? Is this a not-so-subtle dig at Our Savior for *his* religion?" I responded by saying, "Do you mean, 'Christian'?? Not-so-swift Johnny replied, @ParkyBill I'm sure he favors any religion that says "Thou shalt have no other gods before Me." I ended the conversation with... @ObamaDefense Tee hee! If Obama started an unnecessary war that killed 4,000+ servicemembers, THEN would you like him? Hmm? Much of the rest of today's Twitter action was like that, although this Tweet from @JBtower69 to @SarahPalinUSA actually made me laugh out loud. Thanks Madam President for being a great American you are our Guiding Light :) I guess we don't even needs ta wait fer no electifyin' when we kin just declare a new Preznit just like JESUS wants us to. I had to respond to that one... 78
Why wait for the PEOPLE to decide, right @JBtower? After all, they MIGHT get it WRONG again! THEN what? Get the guns? #tcot #tlot Ah, what a day. ON THE AIR AGAIN IN DREAMLAND! Time for another "bad radio dream." This morning, as I oft-times will, I dreamt that I was working at a station where I actually did work part time back in the early 90s -- WBKV in West Bend, Wisconsin. But it looked nothing like the place I used to work. And my old boss from KCLN in Clinton, Iowa (and excellent current friend) Gene Kauffman was the general manager. I began my show and did a break, then went to the men's room for a moment. When I came back to the studio, my microphone was still there... but the cable connecting it to the control board was gone. So first, I go looking around the studio for the cable and it's nowhere to be found. I go to the engineer's office to see if I can't find a replacement cable, and there are tons of cables but none that would fit the microphone. I go back to the studio, and now the microphone is gone. I asked Gene if we had anything in the Marti (remote transmitter) bag that I could use, and he says probably -but instead, what he wants to do is load up the Marti onto a truck and roll through town broadcasting the show from
the Marti antenna (which wouldn't really work, because the Marti broadcasts to an antenna back at the station that carries it out on the regular signal on the big stick antenna). Seems there has been some flooding in town, and it's up to us to get the word out. Using the Marti, we will only cover a couple city block at a time, so it's important that we keep moving. I tried to explain why this idea wouldn't work, but Gene's the boss. So we're loading up the truck and my dead twin brother Bob shows up. He's pissed at me because of a medical procedure he had done. I told him I had experienced the same procedure and it didn't hurt. He said it DID hurt, and he was quite agitated about it. Then, I woke up. It was about 5 am, so I laid there for awhile, went back to sleep, and got up at 6:20 feeling like I had been snoring. THE UP SIDE OF PARKINSON'S DISEASE? Wanna know what's really NEAT about having Parkinson's disease? It's the MYSTERY! It's the getting up and walking into the living room to change the channel, but picking up the remote for the TV and not the cable, and changing the channel from "Input 3" (where the cable comes in) to "Channel 249" where NOTHING comes in, realizing your mistake, and then having to go one channel at a time back to "Input 3" so you can see an episode of "Law and Order" that you've seen a million times! It's the working on a project for work and being distracted by an e-mail, then going back to your project 80
and not remembering what in the hell it was you were doing before being distracted by the e-mail... the having to retrace your steps in the project until you get to the part where it was that you left off. That's COOL! Know what ELSE is neat about having Parkinson's disease? The sense of WONDER! Wondering if what you're feeling in your lower gut is just gonna be gas, or reason to change your diaper. (But, by God, you're PREPARED!) Wondering what you're going to feel like tomorrow. Next week. Next month. Next year. 10 years from now, God willing. Wondering if one of your idiot dogs is going to see a rabbit next time you take them out and pull you off the porch, down the steps, and skipping behind them into the woods. It's like living in a CIRCUS! Trying to walk down a hallway without bumping into a wall. Trying to walk into an open room without freezing in place. Trying to walk down the aisle in a store without digging a foot into the tile and falling. The very act of WALKING with Parkinson's disease requires the concentration of an acrobat! There's the way it can uncomplicate even the most COMPLEX relationships! My wife and I have always been best friends, partners and soulmates since we met in 1988. I love her with all my heart. Only NOW we don't have those pesky "sex" complications that can cause disagreements and discordance in even the most STABLE marriages. If she's not in the mood, that's fine -- cuz neither am I! 81
We're no less affectionate -- we hug, we kiss, we hold hands (especially outside when it looks like I'm going to fall) and we must tell each other "I love you" at least 10 times a day. So we're cool. And it's as ENTERTAINING as HELL! When I open my mouth, I never know WHAT the hell kinda babble is gonna roll out. Or whether or not I'm gonna get stuck on a syllable. Or freeze up and not be able to say anything. Fun, Fun, Fun! Especially for someone who was a professional broadcaster for 30+ years. It's the "keeping people guessing" about what you're thinking. Your face stays the same -- a blank, almost grumpy Parkinson's mask. You could be thinking about Christmas and ice cream and soft, fuzzy puppies and carnivals, but your face looks like you don't have a thought in your formerly pretty little head. Neat! But the really, most wonderful, most magnificently NEAT thing about having Parkinson's disease... ...is the support I get from my family, friends and coworkers. From my mom to my wife, to my brother, to one of my sisters. Everyone is on the lookout for my well-being. Even a goodly number of my Facebook friends. I have cheerleaders! My neurologist is fantastic. I don't feel like just a customer to him. My wife would throw herself beneath me to give me something soft to land on if I started to fall. My Mom writes letters to urge me to keep my spirits up. My sister Becki finds ways to tease and goad me into a good mood. My little brother Joe... same thing. And I like the way it's freed up my creativity -- to write, to dream, to think. 82
I've written a book about having Parkinson's. Have I mentioned that? I think I may have. It's called "No Doorway Wide Enough." I think I may have also mentioned that 100 percent of the proceeds go to PD research. I'm not SURE I mentioned it, cuz the damned thing is gathering virtual dust on the virtual bookshelves because people who don't know me (and a lot who DO) seem kinda SKEERED to read a book where someone writes about his dance with a long-term, degenerative neurological disease... even though -- as critics have noted -- the book is funny as hell! I've written A LOT of books. ALL of them are funny as hell. Steven King writes horror. Anne Rice writes vampire schlock. JK Rowling writes about teenaged wizards. Tom Clancy writes stories about the military industrial complex and spies. I write funny shit. This one is the only non-fiction. So far. I really don't like the stuttering, the slurring, the shuffling, the forgetfulness, the difficulty making plans and staying focused, the fact that it takes me longer to type things because I keep mashing the wrong keys with my huge Parkinsonian fingers. The stuff with my balance sucks, the falling sucks, the occasionally lazy epiglottis that allows fluid into my lungs, I could live without all of that. But who has a choice? I have to life with it. The alternative is unthinkable. And as long as I enjoy my life as much as I do, I have no real problem with that. Besides... my doggies would miss me. (For a minute.)
I KEEP LOSING MY DREAM ID CARD The dream begins with me walking through the narrow streets of Yokosuka, Japan. I have a lead on an apartment, because I don't want to live on base. I find the address (which is a challenge in Japan) and I check the place out. It's suitable. I share the place with a couple Japanese folks who seem friendly and speak much better English than I do Japanese. I am pleased to see there are convenience stores near the apartment, then I decide I'd better get to the Navy base and get checked it. I am delighted to see that the front gate of the base is a matter of blocks from my front door. I walk to the gate and breeze through until a female ensign stops me and wants to see my Navy ID card. No problem. Except... I can't find it. I've got ticket stubs from my flight over. I've got baggage claim stuff. I have a "Hi, My Name Is..." plastic badge that gets pinned to your shirt, I have a drivers license, my Social Security card, my health care card... but no Military ID card. I do, however, have a packet of military documents that contain my orders to the base, so the ensign tells me to go to Building 15 to get my ID card. "Where is Building 15?" I ask. "Damned if I know," she replies. There's a base map on the wall, but there's no Building 15 on it. "Well, you're going to have to find it." So now, I'm on base. My ship is at sea, so I have to get a room in the transient barracks until it returns -which is odd, since I already have an apartment off base that I seem to have forgotten about. I check into the 84
barracks, they give me a room key, I enter the room and pick out what seems to be the only unused rack in the room, and I start to put my stuff away. Then I woke up. It was 7:10. I had 20 minutes to sort my morning e-mail for the folks at Patient Recruitment... Damn it... all that time wasted looking for my friggin' ID card... MORE ABOUT GLENN BECK’S “I HAVE A SCHEME” SPEECH I should turn off the news and listen to some jazz today. The lies, going unchallenged by the media, are making my head hurt. Lie #1: Obama is going to raise taxes. Truth: No. He isn't. In fact, he's CUT taxes on 98 percent of Americans to their lowest rate since the Truman administration. He WILL allow the Bush Tax Cuts on the upper 2 percent to expire at the end of this year -- which is the way the REPUBLICANS DESIGNED IT when they used RECONCILIATION to VOTE IN THE CUTS in 2001!!! This is not OBAMA'S Tax Hike. This is the Bush/GOP Tax hike! Lie #2: The Obama tax hikes will hurt small business and keep them from hiring people. Truth: The vast majority of small businesses don't make enough money to QUALIFY for the Bush Tax 85
Cuts, so they won't be AFFECTED when the tax cuts expire. The GOP is outright LYING about this, and the MSM just smiles and nods. Lie #3: The Beck Rally is about "Taking America Back". OK, that's a half-truth. They DO want to take America back into the imaginary 1950s that never existed. They DO want to take America back from the voters who FOOLISHLY voted for the Secret Mooslim to be their president. They DO want to take America back from those "brown folks" who "lie around on their welfarepaid-for couches and watch their wide-screen TVs" so the good, honest, hard working WHITE guy can GET his cut of the welfare pie, social security and Medicare. Lie #4: Our liberties are being trampled and obliterated. Truth: WHAT liberties are you talking about? President Franklin D. Roosevelt talked about "The Four Freedoms." 1. Freedom of speech and expression -- you cats HATE freedom of speech and expression, unless its YOUR speech and YOUR expression. That's why you flock, like the lemmings you are, to the comfortable LIES being told to you by Beck and Limbaugh and Fox News.
Any deviation from the GOP-approved talking points? THAT's the "hate speech" you rail against. You publicly support Dr. Laura's right to say "nigger" 11 times on the radio with thousands of listeners, while SCREECHING at Rahm Emanuel for allegedly using the word "retarded" in a closed meeting. You are blind to your own hypocrisy because Beck and Limbaugh and Dr. Laura and Fox News and Sarah Palin TELL you that your racism, your bigotry, your hatred are UNDERSTANDABLE and ACCEPTABLE! 2. Freedom of religion -- except, of course for Muslims who want to build community centers and houses of worship too close to the former World Trade Center site. Like Murfressboro, Tennessee. 3. Freedom from want -- except for the folks who rely on the government for their basic needs through no fault of their own. Or are we talking about "freedom from want" for that upper 2% of wage earners who will actually be AFFECTED by allowing the Bush Tax Cuts to expire?
4. Freedom from fear -- except for the fear of Muslims, the fear of Mexicans, the fear of three "new Black Panthers" who may or may not have intimidated voters in an inner city Philadelphia neighborhood that otherwise CERTAINLY would have swung to McCain (!!!), fear of brown people, fear of everything that Beck tells you to fear, that Limbaugh tells you to fear, that Fox News tells you to fear that Palin tells you to fear. Fear of gay people having the same rights that YOU do because if gays get married that will mean the END of traditional marriage, according to thrice-married Newt Gingrich who divorced his dying wife on her death bed. Yeah, there's something in the air today. And it ain't a return to "traditional American values." The traditional American values of tolerance, freedom, helping each other, generosity, not looking for a fight but not walking away from one either. The "traditional American values" YOU cats want are the traditional values of our enemies, who WANT us to fear each other, who WANT us to be intolerant of other religions, who WANT us to divide and be conquered. Each and every one of you waving your signs and saluting Glenn Beck in that great sea of white faces on the National Mall today. YOU are a sending a message to Al Qaeda. That message is, "YOU WIN! WE'RE AFRAID!" Good for you!
BUSTED IN A DREAM STING OPERATION! So, last night I'm visiting a friend of mine (no idea who), and he turns out to be someone I worked with at a radio station (no idea where). We get into his van, and he makes a big deal out of it being the same van he used to drive back when we were friends (whenever the hell that was.)
We go for a ride and end up in this area where dump trucks get loaded and unloaded. We pull up to a window, and my friends (whoever he is) asks for a couple boxes of "Tiparillos." I tell him that I'll pass because I enjoy GOOD cigars, but he tells me that I'll really like THESE Tiparillos because of what they're made of. I smell, then taste one of the cigars, and notice they are made of pot. So, we start to drive away, and it turns out the whole thing was a sting operation. Cops pull us right over and tell us that they're going to arrest us, but not right away. 89
We should go home and wait for them to come and get us. And they give us our Tiparillos and we drive away. We go to my friend's house (wherever it was), and that's when I woke up. Laid there for a few minutes, wondering if I still had to wait for the cops to come get me. Then I realized that it was a dream and the cops AREN'T coming to get me... so I went back to sleep. BILLY McHEAD BONK
Oh, Parkinson's disease! Your lack of body control has provided me with much amusement! Bashing my forehead on the kitchen counter this morning, pure hilarity! Story of morning (so far). Get up. Go to make coffee. See stove covered with ants. Me no like ants. Get ant kill spray. Spray ants. Ants die. Get paper towel, wipe off ants and remaining spray. 90
Then get another paper towel, and open cabinet door under sink. Reach under sink to get Windex. Bend over too far and bounce forehead off of corner of counter. Bammo! See stars. It hurt. Screw it. Think of pain later. Wife need coffee! Finish job. Wipe off stove. Make stove clean. Finish making coffee. Pour coffee for wife. Add creamer. Take to her. Kiss wife. Wife NICE! Then, fill own coffee cup. Grab creamer. Set next to cup. Pick up coffee pot again. Look confused. "Why, coffee cup already full! No NEED more coffee! Why I pick up coffee pot?" Pick up creamer. Put creamer in coffee. Go to desk and sit down. Wonder why brain acting like such numbskull this morning. D'oh! (As a side note, my wife said it's a sign of my devotion that I put my head into everything I do. God, how I love her.) A FEW WORDS ABOUT SPEECH DIFFICULTIES If you would have asked me a year ago, I would have said that it was my understanding that the only speech difficulty associated with Parkinson's disease is the way many Parkies speak softly with whispery, reedy voices. I never thought I would have a problem with that. Still don't. All my years in broadcasting have given me the habit of speaking from the diaphragm, not from the throat muscles.
Here's the part about PD speaking difficulties I did NOT know about: (http://www.selfgrowth.com/articles/Speech_Dysfunctions_In_Parkinson_s_Disease.ht ml)
It has been estimated that between 65-90% of Parkinson's disease sufferers will ultimately have troubles with their speech, and these problems can become apparent in explicit ways which include speaking in either a monotone or unintelligible gibberish. At times, patients hesitate before actually speaking which can give the impression that there is some memory impairment or dementia with the patient. At other times, the speech is faster than normal, and very often the same words are repeated over and over. Again, this can give the impression that the patient is suffering from dementia or memory impairment problems. I've highlighted the areas I'm having trouble with. 1. Unintelligible gibberish. There are times when I want to say something and all the words come out at once in an unintelligible jumble. For instance, if I want to ask Gail, "When were the dogs outside last," it might come out "whennerdogoudsidelas?" Then I stop, close my eyes, focus on the words and say them one. At. A. Time. 2. Hesitation before speaking. Last night, I was trying to tell TJ about something I saw on TV. Actually, I had two thoughts I wanted to convey: a) I may have told you this already; and b) I saw this thing on TV. I opened my mouth and nothing came out. So I forced myself to start, 92
and I began with b), switching over to a) in mid-sentence. Stopping. Starting again. Same thing happens. So I closed my eyes, focused on what I wanted to say, and was then able to say it. 3. Speech is faster than normal. I think this is connected to #1. 4. Words are repeated over and over. I call this the "scratched record" syndrome. You can hear this for yourself on last Sunday's interview on "Boomer Nation Radio" when, early in the interview, I got hung up on a word and said it four or five times before stopping myself. I wrote about this the other day when I wanted to tell Gail, "Don't forget to check the mail," and it came out, "Don't forget chaa... chaa... chaa... chaa..." to which Gail (God love her) said, "I'll check the mail. I remembered." (She's getting very good at finishing my sentences.) So far, I don't seem to have any trouble with conveying my thoughts in writing. In fact, I think I'm getting better at it, even though my fat, Parkinsonian fingers tend to mash all the keys at once requiring many corrections. And when I AM speaking clearly (and not slurring like I just drank a gallon of cheap wine), I am able to record a nice podcast (thanks to a great digital, audio editing program where I can clip out all the crap that I just wrote about). Love that editing software! Now, I'm seeing evidence that the Deep Brain Stimulation may be the cause of some of these speech difficulties... or, at least, it can make a pre-existing problem worse. (http://www.dbs-stn.org/UserFiles/File/SpeechIn%20Ind_PD_rev_.pdf)
DBS and its impact on speech: • There has also been a growing interest in understanding “speech” in individuals with PD who have undergone DBS-STN. Although some studies have noted that DBS can help speech by improving motor systems” involved in speech production,9,13 such as helping individuals increase the motor force needed to produce speech and increase acoustic components of speech, the majority of studies comparing speech before and after DBS-STN have generally shown either no improvement or a decline in speech functioning following surgery. • Some research has found that speech intelligibility (clarity in expressive speech) worsened following DBS, and speech sounded more slurred. • DBS has also been found to have an adverse impact on intonation or rhythm, articulation, and intelligibility; the stimulation itself can cause changes in speech. • Speech function is also very susceptible to micro lesions (damage to cellular structures in the brain) due to the surgical procedure itself. • Krack et al. (2003) examined the long-term outcome of bilateral DBS-STN in 49 PD patients and found that speech functioning declined in these patients after five years.21 This result was interpreted as a 94
reflection of the expected decline in speech that one would see in DBS-STN treated patients. According to this study, DBS-STN does not appear to offer any protection against declines in speech functioning in the long-term. Yeah, well... All things considered, with the dyskinesia I do NOT have because of the reduction in the amount of levodopa I need to take because of the DBS... I'm still glad I had it done. SO... Because I like testing myself, I took the selfadministered Voice Handicap Index (http://www.stimm-undsprachtherapie.de/Dysphonie_Evaluation.pdf), where you measure yourself on 30 questions such as "I feel as though I have to strain to produce voice" and rank yourself at "never," "almost never," "sometimes," "almost always" and "always." These score from 0 to 4, and they are broken into three areas: P for physical, F for functional, E for Emotional. I scored: P=22 (75th percentile); F=15 (75th percentile); E=11 (between the 25th and 75th percentile). Total score: 48 which is right at the 75th percentile (0=great, 100=crappy). Meh. Like I said. At least I write good. THE MUTINOUS MID-BRAIN With Parkinson's disease moving is a constant struggle between my mutinous mid brain and the frontal lobes -which are still (nominally) in charge.
Just got back from a delightful lunch at the Arundel Mills Mall with my beloved. We dined at the food court -- Chinese for her, grilled meat with cheese on buns for me. Then, it was exercise time... a walk to the tobacco store and back. I generally start out OK. Doing the big-boy walk, stretching out my stride, standing up straight... but as we continue it becomes harder and harder to maintain this posture. For one thing, the floor pattern keeps changing. My mid brain doesn't care for that. Not at all. And it sends a message to my feet, "HALT! We must assess this difference in the pattern on the floor so that we may decide what stride is best suited for you, the feet, to navigate this new condition." I can almost imagine the rest of my brain, tapping its feet impatiently, looking at its watch, as my mid brain sorts out the various parameters. The floor is level... it just looks different. We may continue. So, off we go. Then I notice I'm starting to lean forward. So I stop, force myself into an upright and locked position, and continue. I stick close to the wall in what Gail has coined my "Rat boy" position. See, with the wall to protect my right side and Gail to protect my left side, like the rat scurrying along a wall using my whiskers to judge the distance, I do just fine. Then, I find myself coming up to an abutment coming out of the wall. This confuses my beleaguered mid brain and it pulls the brake switch yet again. The mid brain shoots an order to the eyes. "How much room between us and that thing coming out of the wall?" The eyes take 96
a look and shoot their assessment back to the frontal lobes which signal the mid brain that we can make it past the obstruction with inches to spare. The mid brain checks its manuals, schematics and charts, then gives the feet the go ahead to continue. Only I'm leaning forward again. See, what my mid brain REALLY wants to do is have me walk in a hunched over position and take tiny steps. Then and ONLY then will we truly be able to safely ambulate wherever we want to go. Until, of course, my center of gravity gets out ahead over my feet and I have to step even faster and faster and faster and I fall forward onto my face. Fortunately the frontal lobes, the "Thinking Brain", still run the show. (How much longer that's allowed to be the case, we shall see in the years to come.) It shoots an urgent message to the mid brain, "STAND UP STRAIGHT! TAKE BIG BOY STEPS!" The mid brain, responsible for the things you do WITHOUT thinking, flips a middle finger at the monitor screen but does what it's told. Until the next time the thinking brain sees something shiny and forgets about trying to keep an even keel and the mid brain can try -yet again -- in its mutinous efforts to take over complete control of my ambulation. I'm not sure which part of my brain is responsible for my speech... but that guy seems to be in on the mutiny. None of these are issues that can be handled by DBS. These are so-called "dopamine resistant" symptoms, and DBS can only help in the areas where dopamine can help. So we're on our own here, kids.
It was July 3, 2006 when Shiloh joined the Family Schmalfeldt. My sister ―who must not be named‖ told us that her daughter‘s boyfriend had a puppy from a German shepherd couple, and there was only one left. Raven, still a young adult at that time, was very needy. She followed me and Gail everywhere demanding constant attention. So, we thought, if we drove out to Wisconsin and bought this puppy, Raven would have a companion and they could play with each other. Funny how that worked out. When we were at ―she whose name I‘ve forgotten‖ house, we went to bed that night with Shiloh in her crate. Shiloh did not LIKE the crate and made these ungodly noises that no one has ever heard being made by a puppy before. We let her out of the crate and she took that as her excuse to climb all over the bed and play and try to 98
look through the blinds out the window and jump on us and bark, so we decided… to hell with trying to sleep. We got in the car at about midnight on the morning of July 3rd and started back home. Gail and I divided the driving (she sat in the back with Shiloh until I needed a nap, then she drove while I sat with Shiloh). "Get lost shorty. They already GOT a dog!" When we got home that afternoon, Raven looked at
Shiloh with an expression that said, ―What in God‘s name are YOU???‖ That turned into barely masked hostility. She never did anything to hurt the baby, but Raven wanted NOTHING to do with her. Shiloh, for her part, was as bold as brass and scared of NOTHING. (This is the same dog who is now cowering under my legs because the neighborhood idiots are setting off fire crackers.) 99
Until the next day, when suddenly Shiloh was Raven‘s baby and she wanted to take care of her. When our vet first saw Shiloh a few days later, the first thing she said was, ―Oh, sweetie. Don‘t worry. You‘ll GROW into those ears! A lot has changed since that time. And as far as giving Raven a companion, they BOTH follow me and Mom around demanding that SOMEONE throw the damn ball. We love our girlies! WEB NEURO NO GO! I think it was last week sometime while looking for online cognitive assessment tests to help me measure how much of my thought processes are affected by my Parkinson's disease, I stumbled onto a website for a product called WebNeuro. Here's what the Brain Resources website says about the WebNeuro product: WebNeuro is an objective, quantitative and standardized assessment of both symptoms and to support more informed clinical decisions. Additional information is also provided on important vulnerability factors such as negativity bias and emotional resilience. The report helps in determining: # Case identification – including vulnerability risk for mental illness # Management plan - supporting decisions treatment initiation or specialist referral # Review – a time schedule for follow up assessment 100
Wonderful! This is just the sort of thing I want to test and tell you about. And the good folks at Web Neuro, as I said, were kind enough to provide me with a demo version. So, I took the test. Takes about a half hour. First you provide your birthday, age, gender, level of education, and your dominant hand info. Then, there are 14 tests. We start with a Brain Resource Inventory of Social Cognition. You answer a series of questions that show how you perceive yourself in your world, how well you work and play with others, your initiative, etc. Then there's a series of questions that seem to be trying to find out your level of anxiety and depression. Then, there's "Motor Tapping." You tap your space bar, fast as you can, for 30 seconds. Then, there's "Choice Reaction." Two black dots on the screen. If the one on the left turns green, you hit the <-- button. If the one on the right turns green, you hit the --> button. Then comes the memory recognition. The screen shows you something like 15 words. Then, you are shown 3 words at a time and have to identify which of the three words was on your original list. This test is repeated three times. The problem with this test as it relates to Parkinson's Disease Dementia, is that folks with PDD generally have no trouble storing the memory. We have problems ACCESSING it. So, if we were asked to REMEMBER the list of words, we'd do poorly. But if we're given a multiple choice, we will generally recognize the word we saw in the previous list. 101
Then we went to "Emotional Recognition." We're shown a bunch of different faces showing different emotions and are asked to identify the emotion... disgust, fear, anger, happy, sad or neutral. We move on to "Forward Digit Span." We start by being shown 2 digits, and we have to punch those into the keyboard in the order we were shown. They keep increasing the number of digits until they get tired of you getting it wrong. "Verbal Interference" is a version of the Stroop Test. First you have to click the WORD being shown, then you have to click the COLOR of the word being shown. For instance, in the first go-round if you see "GREEN" you would click the word "Green." In the second go-round, if you see the word "GREEN" you would click the word "Red." Get it? Then, "Switching of Attention" which is just a Trail Making Test. Dots on the screen are labled "A" "1" "B" "2", etc. You have to start with A, then go to 1, then to B, then to 2, then to C then to 3, all the way, I think, up to the letter "L". "Go No-Go" is what it says it is. If the word "PRESS" is shown in green, you press the space bar. If the word is in red, you DON'T press the space bar. Then, we go back to the Emotional Recognition. Only this time, instead of recording the face's emotion, we are shown two faces side by side, and we have to say which of the two faces we saw during the test. In the "Continuous Performance" test, letters flash onto the screen one at a time. When the same letter appears twice in a row, press the space bar. 102
Finally, the "Maze". You have to figure how to take a yellow dot through a series of other dots to reach the red dot. If you make the right move, you get a green check mark. A wrong move gives you a red X. As soon as you find your way without a mistake twice (or the program gets tired of you getting it wrong), it's game over. So, I did all these tests, hit the "Finish" button, and the test just kinda went away. I had no idea how I did, but I did realize the whole exercise seemed pretty familiar. I took the same test last week on the My Brain Solutions website. Almost the exact same test! But I didn't find out how I did, because I didn't want to pay the $9.95 monthly fee. Well, I decided since I wasn't likely to get a scoring from WebNeuro for this demo version, I'd pay the $9.95 and take the Brain Solutions version. Same tests, with some slight variances... and I thought I'd get a report telling me how my response times were, how good my memory was for the digit span and the word memorization, how well I did at recognizing emotions and faces, how good was my concentration, and a general idea of my overall cognitive health. I got this. I'm an "empathizer." Empathizer Your brain is sensitive to others and your own internal reactions. This enables you to have a strong internal world, and to also be highly tuned in to the emotional cues, feelings and needs of others around you. Emotion: Thinking:
Nonconsciously intuitive Novelty engaged 103
Feeling: Stress sensitive Self Regulation: Risk oriented Out of all the things I wanted to learn about my cognitive abilities as I become more concerned each day about the possibility of encountering Parkinson's disease dementia -- this test told me... Absolutely... Nothing! I am not a doctor. I do not play one on television. But after 10-1/2 years of having Parkinson's disease, I'm fairly hip about such things as memory, executive function and such. Other online tests DO tell you how well your memory is doing, and they throw in something of a Stroop Test as well. AND YOU GET RESULTS YOU CAN UNDERSTAND!!! Now, the Web Neuro version promises to send a report to your clinician. So perhaps THAT is more detailed than the psychobabble of the Brain Solutions version... which provided me a list of "brain exercises" I should do every day to "optimize" my brain. I just went back and canceled my $9.95 monthly membership fee. I feel smarter already. (NOTE: If the people at WebNeuro show me how to ascertain the things I WANTED to ascertain from this test, I will gladly print the results for you here... and apologize in full for what turned out to be not the happy review I hoped it would be.) 104
BUT WAIT! THEREâ€™S MORE!!! It has ALWAYS been my philosophy since being diagnosed with Parkinson's disease that a more informed patient is a more involved patient, and a more involved patient has a better prognosis in general. Since 2000, I've been engaged in a learning exercise about PD, and now that I'm (perhaps) beginning to show some cognitive deficits, I feel it's important to know as much as possible as SOON as possible to be better prepared for what may be around the corner. Also, the better to prepare my wife and caregiver so SHE knows what to expect and isn't taken by surprise when I react to an innocent comment by becoming petulant or bursting into tears. Got a note last night from the person I've been dealing with at Brain Resource who sent me a demo copy of their WebNeuro application, which ostensibly checks a person's cognitive function. Although they've been very nice and very helpful, I was unable to give the product a good review because the demo version doesn't give you a readout, and there's an almost identical version of the test offered by the same company where you get "results" and have access to brain exercises for $9.95 a month. My "results" were that "I'm an emphathizer." (I think I'm more of a "canceler." I canceled the monthly subscription immediately.) As I noted in this post, this is not what I wanted to learn. I wanted to see what deficits I have, if any, in the realms tested by WebNeuro -- Word Recall, Digit Span, something of a "Stroop Test," facial recognition, "Go, No-Go" and the like. 105
Last night's e-mail praised my description of the test and explained their policy of not releasing the results directly to the patient. They offered to send the results to my neurologist. I wrote back saying that as a person who volunteered for brain surgery, I don't think there's anything in that report that's likely to alarm me unduly. Frankly, I find this whole attitude of "we'll do the test and give your doctor the results -- but YOU can't see them until the doctor does" sort of condescending. I realize that most people with a medical condition aren't as well-versed on their conditions as I am, but damn it... it's MY BRAIN!!! I gave them permission to send a copy to my neurologist, but asked that they send me a copy at the same time so I can be better prepared to discuss the results with him when I see him in October. I think a patient has the right to know -- instantly -what a test shows or doesn't show. When I had my swallowing test done, the speech therapist told me on the spot, as we were looking at the film together, that I had a sluggish epiglottis. I did not freak out and run down the hallway screaming. ESPECIALLY if a medical test comes back normal... they should let you know as soon as THEY know that everything's OK... not make you sweat out waiting for a doctor to call you to tell you everything's fine. Even worse, make an APPOINTMENT to COME IN and be told everything's fine. It should be up to the patient. The patient should be asked, "Do you want to know right away, or do you want us to send the report to your doctor and let him/her 106
explain it to you?" I want my doctor to know what this online standard neuropsych test showed... or didn't show. But I feel it's an insult to my intelligence to ASSUME that I won't understand it if the test shows a bit of a cognitive deficit. Even moreso if it doesn't! BUT WEâ€™RE NOT FINISHED YET! WebNeuro, a service of Brain Resource, has declined my request to send me a copy of the online neuropsych test I took several days ago to see if I could get a measure of my cognitive decline -- if any such decline exists -- as I approach 11 years of Parkinson's disease. Apparently, they take the position of the old Catholic church -- we in the non-medical laity are too dim to truly understand the Word of God as presented in a simple online neuropsych assessment and must have it interpreted for us by the clergy of Doctors. This strikes me as odd on a couple different levels. 1. It wasn't that complicated of a test. Word recall, facial recall, emotional recognition on faces, digit span, etc. All I want to know is a. How many words (if any) did I miss in the word recall? b. How well did I fare on the choice reaction? For instance, when the left light turned green, did I press the left button? And what was my reaction time? c. How many of the facial emotions did I fail to recognize? d. How many of the faces did I fail to recognize when I saw them again?
e. How did I do on the "space key tapping for 30 seconds" and how does that compare with others of my age? f. In the "Go, No-Go", did I "Go" when I should have "Not Gone" and vice versa? How many times? g. Did I show any deficit in learning the correct path in the maze? h. Did I screw up anything in the Stroop test or the Trailmaking test? 2. THEY OFFER THE EXACT SAME TEST (for which you get "results" if you pay the $9.95 subscription fee). Of course they're USELESS results -- like I need to know that I'm an "EMPATHIZER"? I want to know how much (if any) my cognitive abilities may be slipping, not whether I feel other peoples' pain! Seems to me, this could be provided to me without interpretation. Like, for instance, they did at CNS Vital Signs. I wrote to them earlier this summer, explained who I was and what I was trying to do, and they sent me a demo that allowed me five complete assessments -complete with results and semi-interpretations... like this from June. As you can see here, there is nothing in these results that caused me to run screaming into the streets or made me start looking for a strong crossbeam here in the house that could support my weight and a length of rope. It confirmed what I pretty much already knew... I have a memory deficit, but as of June, I was doing pretty much OK. If I weren't out of assessments, I'd take another one
to see how well my September score stacks up. Maybe I'll see if I can't finagle another one.
Anyway, if WebNeuro wants to take the old Catholic position, that's just fine. Maybe Dr. Grill will find a minute to send me the results so I can review them in advance of our appointment in October. Until then, however, my review of WebNeuro and its nearly identical "sister test" which will tell you what kind of 109
person you are without answering any of the important questions (for the price of a $9.95 monthly subscription) will remain the same. LOVE THEM DOUBLE FEATURE DREAMS! Had one of those persistent, two-part dreams last night. You know the kind -- you wake up from the first part, realize it was all a dream, then fall back asleep and pick it up, not quite where you left off because circumstances are different now. PART I I was living in some sort of communal housing. There was a girl who may or may not have been my girlfriend. I wanted her to be my girlfriend, but she was more or less aloof about it. Much less aloof was a young hairless gay fella who lived on the first floor. He was in LOVE with me (in a manner of speaking) and was constantly leaving clues of things he'd like me to do to him. I tried to be nice, told him I wasn't interested, but the more he 110
persisted the more irritated I got. Then, at one point in my dream, I "woke up" and he was in BED with me. SMILING at me. I told him to get the hell OUT of my bed or he was going to be a gay ghost! Then, I actually woke up and had to lay there for a few minutes before realizing I was in my own bedroom, not in the communal housing, that I was in my bed by myself, and we don't even HAVE a downstairs, let along a lustful gay guy living down there. I smiled at the sheer ridiculous nature of the dream and went back to sleep. PART II Now, I was in the house I grew up in as a kid. The girl was there, but now she was my dead twin brother Bob's girlfriend, and they had a baby. Mom was downstairs doing up the Christmas decorations and I went outside to shovel snow. The city had a pretty neat idea... before the snow fell, they put plastic roll-up mats on the sidewalk. Now that the snow was over, they just rolled up the mats and the sidewalks were clean. I had to shovel out the driveway (which we didn't HAVE in the house I grew up in). When I was done, there was Christmas music on the radio and my mother's father (who died in 1995 at the age of 94), was trying to impress Bob's girlfriend with what a smooth dude he was. I stood there, biting my tongue, knowing things about the old man that Bob's girl would NOT think were cool... Then I woke up again. This time it was light in the room. Time to get up.
STEM CELL ROULETTE I'm still in something of a state of shock over the recent ruling by a DC Circuit Court Judge putting a halt to federal funding of embryonic stem cell research at the request of a conservative group that argued ESCR "diminished the supply of available adoption babies."
I truly thought when we elected a progressive president and a progressive legislature that we were PAST the day when religious superstition could overrule science. Wrong again. I think of the promise ESCR holds, not only for my exquisite little inconvenience, but for diabetes, spinal cord injuries, heart disease and other afflictions. I shake my head in wonder as I imagine what GOOD could have 112
been done ALREADY if ESCR had been allowed federal funding between 2001 and 2009, back when religious conservatives held sway over the purse strings. Now we're back at Square "0". We are once again second class citizens. Our rights are OFFICIALLY secondary to the rights of frozen blastocysts that will, inevitably, be thawed, scraped and burned as medical waste when Mommy and Daddy get the baby they want from in vitro fertilization. (And since IVF is the REASON these blastocysts are created and then destroyed, where is the right wing outrage over IVF? Why is it reserved only for the victims of Parkinson's and paralysis and diabetes and heart disease who could BENEFIT from these cells BEFORE they are destroyed - AS THEY WILL BE ANYWAY!) Adoption agencies are actively seeking parents for children who need them. There is no shortage of adoptable kids. That was just an emotional ploy this conservative group used to get their case in front of this Reagan-appointed conservative judge. The opponents to ESCR say, "Hey! We don't need it! Look at all the good things being done with ADULT stem cells." I reply thusly: 1. Adult stem cells have to be put through a long and expensive process in order to be rendered pluripotent -able to become any kind of human cell. 2. Embryonic stem cells already ARE pluripotent. No added expense required. 3. And how do you KNOW adult stem cells are better than ESC's? There hasn't BEEN any serious RESEARCH with ESCs because of the LACK OF 113
FEDERAL FUNDING!!! It's like you're opposing spending money to develop the automobile because "the horse works just fine." Only your reasoning isn't quite that advanced -- or intelligent. We had to wait 8 years for a progressive administration that believed in science over superstition. Now, we will have to wait again until some REASONABLE judge rules on the issue and federal funding for ESCR is resumed. Given the 8-year delay, compounded by this new delay, it's probably wishful thinking to believe it could still happen in my lifetime. (The day I was diagnosed in 2000, I was told a cure was 10-years away... tops!) But I can still hope, if not for myself, then for the next generation. And the one after that, and the one after that, and how many other generations there are to come that will have to face disease, dementia and death because of the superstition of right wing Christian conservatives. TIME TO PLAY: MYSTERY BRUISE!" Another mystery bruise. No idea where it comes from. Was just changing my clothes and I noticed it there on my right ankle. It only hurts slightly. But I don't recall banging my ankle into anything. Ah, Parkinson's disease! Always 114
the riddles with you! This, of course, is not the first time I've found bruises on myself with no idea how I got them. I used to get them a lot more back before I was taking clonezepam at night. Back then, I used to lash out, punch, kick and yell in my sleep. So, I'm guessing, at some point last night I must have smacked myself on my right ankle with my left heel and it didn't hurt enough to wake me up. Whee! IT'S ONE THING AFTER ANOTHER! First, I'm nobody's sweetheart today. I have no patience for anything. I have a low grade headache and I'm grouchy. I bumped my knee into one of the handles on my exercise bike. I lost my balance and fell against our dresser, the corner stabbing me right below my left underarm. My wife wasn't feeling well, and I was worried about her (but she's doing better now). Raven wants to bark at every sound she hears outside and it's only the image of the poor, abused animals in the ASPCA commercials keeping me from beating her to a fare-thee-well. My feet are trying to cramp up like parrot claws, I'm getting hate tweets from clueless wingnuts who think Glenn Beck is the second-coming, and besides that... They're out of Chocolate Dunkers at the Pizza Hut. Oh well. I'll have to make do with the Cinna-sticks. A poor substitute. But I shall attempt to drown my sorrows in a stuffed crust, ham and beef, mushroom, extra cheese pizza.
It's days like the last few that make me kinda sorry I quit drinking. BUYING A CAR IN DREAMLAND IS TOUGH! I never realized buying a car in Dreamland could be so tough! In this morning's Parkinson's disease and levodopafueled adventure, my late twin brother Bob and I are at this car dealership looking at vehicles. The dealership is run by this huge, violent man who may also be running drugs out of the establishment. In one of the offices, there are three girls who are clearly dealing in crack. Bob and I are waiting to find out whether or not we can get the car, and this violent car dealer comes out with a gun and puts it to my head saying that I've been helping the girls run their crack ring. No matter how I protest, he just refuses to believe me and says he's turning me over to the cops. Bob, who has bought a car from this guy before, tells him I was with him the whole time, so the guy sells us the car and I drive home to where I grew up in Clinton, Iowa. Only now, the house is divided into two separate dwellings. On the left side there's a bunch of rowdy, unkempt kids. They're mean, disrespectful and very loud. My mom lives on the right side and she's very upset -- with ME -- for getting the rowdy kids all riled up and waking her up early.
So I leave the house and go somewhere, not sure where, but I'm in a group of people listening to a lecture by Andy Griffith about good citizenship. But all anyone in the audience wants to ask him about is his old TV show and he gets very annoyed by that. Then, I woke up. Don't you wish YOU had vivid dreams like this, TOO? You can have MINE if you want them... NO END TO THE WEIRDNESS I don't know if it's because I ran out of my Ambien or what, but I had me an odd, odd dream this morning. For one thing, my ex-wife (the one who has nothing to say to me) and I were getting back together. Only she didn't LOOK like my ex-wife, she looked like a girl I dated for a little while when I was in Hospital Corps School in the Navy back in 1973. She was kinda reluctant about the idea, but agreed to get back together for the kids' sake. We were going to live in my maternal grandparents' house -- the one the old bastard left to his 18-year old girlfriend when he died in 1995 (that part, sadly, I ain't making up). But just as we were getting things set up, my maternal grandparents (my grandmother died in 1984) decided they wanted to move back in, but just for awhile. So I went to talk to my Mom, who lived right across the street. (Of course, in real life, when I was a kid we lived on the opposite end of town, and now that I think about it, my grandparents' house was on the wrong side of the street.) Mom wondered about the wisdom of "She Who Shall Remain Nameless" and I getting back together, but 117
said that if that's what I wanted she'd support me. When I went back across the street, my grandparents were already there and they had the place all decorated up old folks style. My ex-wife, still looking like my girlfriend from 1973, sat on a chair with her arms crossed in front of her. She didn't like this situation one little bit, and decided she was going to move back to California. Then I woke up. Kinda. I was aware of being awake, but laid there running through the dream in my mind. And I continued the audio portion of the dream, even though I was aware of being awake. Turns out my paternal grandmother (who died in 1988) was sleeping in one of the side rooms of my mother's house and my kids were making noise... Mom was afraid they'd wake up Granny. As I laid there, remembering that this was just a leftover from the dream, my Mom reminded me, "That may be true, but your grandma is still sleeping and if your kids wake her up, she's gonna be grumpy as hell." That's when I decided I'd better snap out of it. Sat up on the edge of my bed at 6:15, got up, sent Gail back to bed (she stays up with the doggies so they can have free run of the house after their 5:30 yarding) and decided to write this all down before it fades away. The weirdness. The weirdness. MY SISTER BECKI IS A MEAN, MEAN GIRL! And here's why. My Mom and I have this established tradition of calling each other during Green Bay Packers games. Luckily, yesterday's game was one that we got on
FOX, but usually I have to watch NFL Red Zone to get updates. When the Packers score, I call my mother to celebrate. Before the game yesterday, I called Muz to discuss it with her. And when we were done, an errant neuron in my diseased and corrupted brain misfired, and I believed that just flipping the phone shut would disconnect the line. It didn't. And for 13 minutes my mother (the kind of person who waits for YOU to hang up before SHE does) listened to my regular conversation with Gail, my howls of outrage over the way the Detroit Lions got jobbed by the refs in their game with the Bears, etc. Then, I noticed the phone was still connected, so I hit the red "disconnect" button. My mother immediately called. "Did you know that for the last 13 minutes you were still on the phone?" I told her that I had just become aware of that fact. My sister Becki always joins Muz to watch Packers games. When she got there, she sends me a text. "i hear U don't know how to use your phone" First of all, I have no patience for people who text the letter "U" instead of writing out the word "you". It's TWO ADDED KEYSTROKES! Lazy asses! 119
I responded. "At least I have a phone, not a Cracker Jack prize." My little brother Joe dubbed Becki's phone with that moniker. I swear, it takes "AA" batteries. She responded. "i know how to use mine... you worried muz to death" Oh, how melodramatic. Mom could hear me talking and cursing the referee's decision in the Lions/Bears game. If she was worried, it was because she raised a son who uses that kind of language. I responded. "I thot flipping it shut hung it up. Sue me." See, since she disrespected me by typing "U" instead of "you," I DOUBLED the insult by dropping 4 letters from the word "thought." She responded. "u thought wrong, dumbass" And that's another thing. She never uses proper capitalization or punctuation in her text messages. Maybe her Cracker Jack toy keyboard doesn't HAVE that capability. Who knows. I got the last word. Or so I thought.
"I have a brain disease. Nobody likes you." Then, the Packers got their first touchdown. So I called Muz. I could hear Becki in the background, "Did Gail dial the phone for him?" I told Muz to tell Becki that THIS is why nobody likes her and she has no friends. Next touchdown, I called again. This time, I hear Becki in the background, "Did RAVEN dial the phone for him?" Well that's not only MEAN, but it's SILLY! A border collie, no matter how intelligent, doesn't have the capacity to use or even comprehend cellular communications devices. So, we left it at that. Becki is a mean, mean girl. And if you should see her on the street today, I command you to throw apples at her. HOW DOES ONE FORGET SOMETHING LIKE THIS? (Bodily Function Alert: If talk about bodily functions, however tastefully described, horrifies you... skip this post.) Monday morning. Shower time. But first, gotta go potty! Sat there for 10 minutes or so, staring at the pile of magazines Gail keeps in a little bin in front of the loo to keep her mind occupied while she conducts her business.
After the aforementioned 10 minutes, I think I actually said aloud, "Well... I guess I ain't gonna poop." I stood up, turned around to flush the john, and... (Insert a sound effect of a dramatic nature here... something like a "dah-DAH-dah-DAAAAAAAAAH!") There it was. At the bottom of the bowl. Mocking me with its very presence. A dookie! "HOW DID YOU GET THERE?" I asked it. The dookie, of course, had no answer. If it could speak and had shoulders, I assume it would have shrugged them and said, "The usual way, I s'pose." Now, to be honest, there are days when I forget whether or not I've had a BM that day. But I usually find myself wondering about that in the mid-to-late afternoon. NOT MERE MINUTES AFTER DEPOSITING THE AFOREMENTIONED BM!!! Ay yi yi! COULD MMSE MEAN PDD FOR ME? I've been looking at a paper on the diagnosis of probable and possible Parkinson's disease dementia. There are several proposed criteria that must exist for there to be a diagnosis of suspected PD-D. 1. Ya gotta have Parkinson's disease. Check. 2. The Parkinson's had to become apparent well before the suspected dementia. Check. By about a decade.
3. The PD must be associated with a decreased global cognitive deficiency. Only one way to find out, and that's take a test. There are some of these tests that just seem so dirt simple, but you can't administer them to yourself. You need to have someone give them to you. So I asked Gail to administer the Mini-Mental State Exam (MMSE). Then, I tried explaining what she needed to do and what I needed to do. Gail has never been one for just doing something I ask without asking questions about it. This time, she wanted to know why I wanted to do this test if I already knew the answers. There was something in her tone of voice that made me feel like I was bothering her, so I told her to just forget it. She asked again, "Why do you want to take this test if you already know all the answers?" I told her that I did NOT know the answers, that some portions of the test required her to come up with a sentence telling me to do something, to make up three words and ask me to remember them, etc. and etc. And frankly, I was quite irritated. And this is part of the problem. (We'll get back to the MMSE in a minute. Hang in there.) On Thursday when our plane landed, Gail wanted to look in some of the little kiosks and stores to see if she could find a destination-related t-shirt or something. I reminded her of the last time we were at this airport, and I was so slow they had our luggage off the turnstyle and locked in an office by the time we got to baggage claim. Then I thought, well hell... we got our luggage LAST time so it won't hurt if she looks in a store or two, but she kept refusing every time I suggested it. I mistook this to 123
mean she was angry with me. When we got to the car rental counter, I put my hand on her shoulder and began to tell her that I didn't know if we still had collision and comprehensive on our auto insurance, so we should probably get some sort of insurance for the rental and she pulled away from me saying I was hurting her shoulder. I didn't think I was pressing that hard, so I just said, "Fine," and turned around. She told me to "knock it off." I said "YOU knock it off. You've been mad at me since I said we had to get to baggage claim before they locked up our bag." She said the first time she had been mad at me all day was right that instant. And my mind flashed back onto this little bit of knowledge I picked up some time ago in my reading about Parkinson's disease dementia (PD-D). Up to 40% of patients have visual hallucinations, usually benign, whereas more sinister symptoms, such as delusions, paranoid ideation, and delirium, become more frequent as the disease progresses. ***** Delusions occur infrequently, but are upsetting for carers and relatives because they are often paranoid or accusatory in nature. Swell. Two flashes of paranoia in the span of less than a week. Anyway, back to the MMSE. Like I said, it's a dirtsimple test, but you can't administer it to yourself. So Gail (quite cheerfully, actually), administered the test.
1. What year is it, what season, what date, what's the day of the week, what's the month? I screwed up the season. Twice. First I said, "Spring... no, no, wait... Fall." Gail said, "It's summer." D'oh. One point off aready. 2. Where are we now, state, county, town/city, hospital, floor? Well, we're not in a hospital, we're in a house and I'm in the kitchen. Aced it. 3. Gail named three unrelated objects and asked me to repeat them. Car, Mail, Tree. I repeated 'em just fine. 4. I had to count backwards from 100, by 7's, stopping after the 5th attempt. I only got two right. Three more points off the total. 5. Gail asked me if I remembered the three unrelated objects. I got Car and Mail, but couldn't remember the word "Tree." One more point off. 6. She showed me a remote for the TV and a Magic Marker and told me to identify each, which I did with ease.
7. I had to repeat the phrase, "No ifs, ands or buts." Perfect. 8. "Take this piece of paper in your right hand, fold it in half and put it on the floor." Done, Done and Done! 9. She showed me a sentence she had written and I had to do what it said. She wrote, "Pinch your nose." I'm just grateful she didn't write, "Stick a knife into your throat." 10. I had to write a complete sentence with a noun and a verb. I wrote, "The dog ate the cat." Perfect. 11. I had to copy a picture of two intersecting pentagons. No prob. My final MMSE score is 25. Here what the literature about PD-D says about 'dat! Test proposed: MiniMental Status Examination (MMSE). The MMSE is a formalized mental status examination useful for identifying cognitively impaired patients and for characterizing PD-D. It is proposed because it is a simple and universally applied scale that can be easily and rapidly performed by a clinician in the office or at the bedside. Cutoff proposed: score - 26. A 126
score of 25 or below is proposed because the MMSE is relatively insensitive to executive dysfunction. This cut off score was used in a recent pharmacological trial in PDD. The MMSE is influenced by the effects of age and level of education. The recommended cut off is appropriate in patients below the age of 80 and in those with at least 10 years of formal education. In older or more poorly educated patients, reference to published norms may therefore be helpful in judging impairment in individual patients. OK, so I scored below the cutoff. That means I meet criteria 1, 2 and 3. But that, by itself can't mean much, right? There are other factors to be considered. Right? Of course. 4. Cognitive deficiency must be severe enough to impair daily life activities. Here's how the literature describes it. One cornerstone of the diagnosis of dementia is the evidence of an impact on daily living activities that cannot be attributed to motor or autonomic symptoms in case of PD-D. The examiner should ask questions about daily functioning such as the patientâ€&#x;s ability to manage finances, use pieces of equipment, and cope in social situations. Appendix lists another simple assessment of the ability to organize independently the daily distribution of antiparkinsonian medication that may be suitable to determine an impact of cognitive changes on daily life, although this requires validation. 127
OK, so I snapped at my wife twice in the span of a week and forget to take my pills unless reminded by an alarm to do so, and even then sometimes I still forget. I forget what I'm doing in the middle of a task. If I'm engaged in something and my attention is diverted, I have to backtrack mentally to figure out what the hell I was doing when interrupted. So #4? Check. 5. Impairment in more than one cognitive domain. Well, let's see. A. Attention. â—? Serial 7â€&#x;s of the MMSE. The patient is asked to repeatedly subtract 7 starting at 100. As the test is aimed at assessing attention, the instructions should not be repeated. Cutoff proposed: At least two incorrect responses. I got 3 wrong. So there's ONE cognitive domain. B. Executive Function. One test is lexical fluency, for instance, naming as many words as you can starting with the letter "S" in 60 seconds. I tried this the other day and got 17. The cutoff is 9 or less. There's also the clock drawing test which I've also aced, so we'll say I'm fine with the Executive Function. 128
C. Visuo-Constructive Ability I drew the intersecting pentagons just fine. problem with "C".
D. Memory Impairment The three-word recall test in the MMSE is the go-by. I missed one. And what does the literature say about THAT? Cutoff proposed: At least one missing word. Missing one word in the free recall of the MMSE is considered sufficient to suggest the existence of a memory/retrieval problem. OK, so that's TWO cognitive domains. And that fits the profile for PD-D. But that's not enough for a diagnosis, right? Although behavioral symptoms are not required, the presence of at least one of the following behavioral symptoms (apathy, depressed or anxious mood, hallucinations, delusions, excessive daytime sleepiness) supports the diagnosis of probable PD-D. So, we're noticing a trend?
TABLE 1. Algorithm for diagnosing PD-D at Level I 1 A diagnosis of Parkinsonâ€&#x;s disease based on the Queenâ€&#x;s Square Brain Bank criteria for PD 2. PD developed prior to the onset of dementia 3 MMSE below 26 4 Cognitive deficits severe enough to impact daily living (Caregiver interview or Pill Questionnaire) 5 Impairment in at least two of the following tests: Months reversed or Seven backward Lexical fluency or Clock drawing MMSE Pentagons 3-Word recall The presence of one of the following behavioral symptoms: apathy or depressed mood or delusions or excessive daytime sleepiness may support the diagnosis of probable PD-D.
Well, dandy! Do I get a lapel pin?
Now this is for a provisional diagnosis of PROBABLE PD-D. For a DEFINITIVE diagnosis, you gotta take a lot more tests. But these require a doctor's visit. I have one coming up next month. And I have a headache..
AND THERE YUH GO! Guess that‘ll do ‗er for now. Like I said at the outset, if you don‘t care for my political point of view, blame the Parkinson‘s disease. If you do like it, credit me for remaining the clear-thinking, rational man of the world you recognize me to be. But above all, I hope you didn‘t learn anything. I hope you didn‘t learn that over 50,000 Americans are diagnosed with PD every year, and those folks are getting younger and younger. I hope you didn‘t learn that there needs to be a drive to cure PD, just as strident, just as powerful, just as politically focused as the drives to treat breast cancer, prostate cancer, lung cancer, heart disease, high blood pressure, and the heartbreak of erectile dysfunction. I hope you didn‘t get any insight as to what it‘s like to have a degenerative disease, to know it‘s not going to get any better, it IS going to get worse, and to know what it‘s like to have someone you love who loves you just as much who will stand by you as long as she has the strength to do so. And I certainly hope you didn‘t learn that it IS possible to face a disease like PD with hope in your heart, a smile on your face, and a fresh pint of ice cream in the freezer. Now, go do something productive with your life.
OTHER BOOKS BY BILL SCHMALFELDT
NO DOORWAY WIDE ENOUGH Non-Fiction, 470 pages Bill Schmalfeldt thought his story was worth telling. After being diagnosed with Parkinson‘s disease in 2000, having experimental deep brain stimulation surgery in 2007, Bill wrote a manuscript about the experience. Not only could he not find a literary agent willing to even look at it, publishers rejected it without even reading sample chapters. Believing the story needed to be told, Bill dug into his own pockets and took the selfpublishing route. Now he‘s donating the author proceeds to the PD organizations that helped him. After writing a book about his experience as a brain surgery volunteer, a Maryland Parkinson‘s disease patient believed his story would make an interesting book. But after years of failing to interest numerous book agents and getting rejection slips from publishers who 133
didn‘t even request sample chapters, Bill Schmalfeldt decided to take matters into his own hands. Reaching into his own pocket, he has self-published his story and is donating 100 percent of the author‘s proceeds from the book‘s sale to help find a cure for this crippling, degenerative neurological disease. ―No Doorway Wide Enough‖ is Schmalfeldt‘s personal story about living with a neurological disease that afflicts over a million Americans. 100 percent of the author proceeds will be donated to the National Parkinson Foundation and the Charles DBS Research Fund at Vanderbilt University Medical Center. ―I was diagnosed at an NPF clinic in Miami and Vanderbilt‘s Neurology Department is looking to expand their DBS clinical trial from its current 30 patients to a nationwide trial involving hundreds, if not thousands of folks like me. I felt I should help any way I could,‖ Schmalfeldt said. ―The title comes from my days as a Navy hospital corpsman at the former U.S. Navy Home in Gulfport, Ms.,‖ the 55-year old author said. ―I used to wonder why it was that some of the older folks tended to stop and ‗size up‘ a doorway before walking through. I did a spoton impression of this effect for my friends at parties. Got lots of laughs. Now I know the reason for it.‖
Written in the style of a diary, Schmalfeldt weaves a tale that starts with being diagnosed at age 45, why he decided to participate in an experimental clinical trial that involved brain surgery, and his recovery and life afterwards. With a wry and sardonic sense of humor and writing style, Schmalfeldt weaves an easy-to-read tale of his personal struggle with the disease, pulling no punches over his frustration over the mixed results of his surgery. ―It‘s the story of my Parkinson‘s decade — 2000 to 2010,‖ Schmalfeldt said. ―This book is written not only for the Parkinson‘s disease patient,‖ Schmalfeldt said, ―but for anyone who knows, cares for, or loves someone who has this beast of a disease. The one thing I want people to take away from this book is that Parkinson‘s disease is not a death sentence. It‘s a life sentence.‖ Schmalfeldt said that the book was also meant to highlight the importance of clinical trials in medical research. In 2007, Schmalfeldt volunteered for a clinical trial at Vanderbilt University Medical Center in Nashville to test the safety and tolerabilty of deep brain stimulation in early PD. ―Clinical trials are vital in the search for new treatments and cures in a variety of diseases,‖ said Schmalfeldt, who works from home as a writer-editor for the Clinical Center at the National Institutes of Health in Bethesda, Md. ―Without people volunteering to take part in this 135
kind of research, scientists would have a much harder time finding new drugs, treatments and outright cures for the diseases that have plagued mankind throughout the years.‖ Schmalfeldt learned about the clinical trial at Vanderbilt in the course of his duties at NIH. ―I write and produce podcasts about the importance of clinical trials,‖ he said. ―What kind of hypocrite would I be if I saw a trial that I was qualified for and didn‘t participate?‖ Bill has promised to donate 100 percent of the author's proceeds from the sale of this book to the National Parkinson Foundation and the Charles DBS Research Fund at Vanderbilt University Medical Center. You can read Bill's blog at http://parkinsondiary.com. A FEW ONLINE REVIEWS: Honestly at first reading the description of the book I was skeptical. It sounded like an all too depressing subject with the real possibility of turning into a sobstory. How I was surprised though. The author is an amazing narrator, writer, podcast editor, and all around person. He is charismatic, charming, and funny all the while dealing with some of the toughest life altering events anyone is likely to go through. The book is inspirational, amusing and informative. Quite frankly it's a book you really must (have). -- Chris 136
As we stumble through life trying to learn what is important and what isn't, No Doorway acts as a guidebook on how to handle life-changing, insurmountable problems. Its answer- humor. Parky Bill meanders through a decade-long tale about his experiences before and after being diagnosed with Parkinson's Disease. What I found amazing about the book is that Parky Bill maintains a sense lightness and humor even during the most frightening, and lifethreatening events. Doing so, Parky Bill narrates his tale with a voice of strength, courage, and sageness. Doorway is a book where readers will make a lot of connections, and believe it or not- find a lot of answers. Thanks Bill. -luckymaru Hey, This is a must have podiobook. A brilliantly irreverent and sometimes laugh lot loudly tale. It acts as a guide book on how to handling life changing and readers will make a lot of connections. Thanks -- DD This is a must-have podiobook. A brilliantly irreverent, and sometimes laugh-out-loud tale (about a serious subject) told by one of the most charming and amusing authors to hit this site. Plus, heâ€˜s got great pipes and a love for old time radio schtick. Whatâ€˜s not to like? I look forward to further episodes of this fascinating and welltold story. -- Zeus 137
I worked with Bill some years ago when he hosted audio programs about health topics for a federal agency. I learned a lot from him, and was curious to read about his experiences with Parkinson's Disease, particularly his participation in a clinical trial of deep brain surgery. Bill tells his story both with brutal honesty and with humor, without ever getting maudlin. He explains why he chose to enter the study and details his progress. In the end, though, this is more than a book about the course of a disease. You get a window into the daily life of a remarkable man and a warm, loving couple that can sustain a fighting spirit and sheer joy in being together, whatever the challenges they face. -- Harrison Diagnosed with Parkinson's disease at age 45, Bill Schmalfeldt refused to go quietly. Instead, he volunteered for experimental Deep Brain Stimulation surgery. "I make a living telling people about the benefits of clinical research," writes Schmalfeldt, a former Navy corpsman, now a media guy, author, and blogger. "What kind of a hypocrite would I be if I didn't take the opportunity to put my money where my mouth is?" Still, being a DBS clinical trial volunteer takes moxie. Neither Schmalfeldt nor his doctors could predict how things would turn out. He doesn't flinch from blunt appraisals of living with an incurable, degenerative disease, and deploys gallows humor for those special 138
moments: the drilling-holes-in-the-head part; how his deep brain sounds via implanted electrodes, in real time; how even the best hospital does inscrutable things to scrambled eggs; and how to deal with able-bodied slackers in the handicapped seats. You've heard of "being a partner in your own care"? Schmalfeldt's the poster guy for that, and an advocate for other "Parky" people. In choosing to be a clinical trial volunteer, then persisting in writing about it and its aftermath, he's rejected the role of passive patient. Whether he's ribbing the staff, loving his wife, or querying God (without a whiff of proselytizing, thank you), this is a hero's story. Best of luck, Bill! -- Belle GET YOUR COPY TODAY, AVAILABLE AT MOST MAJOR ONLINE BOOKSELLERS, AND AT:
Parky Billâ€™s Parkinsonâ€™s Place http://parkinsondiary.com
UNDERCOVER TRUCKER: For obvious reasons, his real name cannot be revealed. You’ll understand when you read the improbable and hilarious adventures of “Billy Big Rig” in “Undercover Trucker: How I Saved America by Truckin’ Towels for the Taliban.” Read about his fall from grace in the world of truck driving:
For this part of the story I need to rely on the police reports because frankly the last thing I can clearly recall was climbing back into the truck. From what the reports say, I flipped the truck over on its side trying to make the turn from the highway to the chemical company. It‘s true what they say about God looking out for drunks and idiots, because if I had flipped that truck over coming OUT of that plant with the stuff I was going to load up on, instead of going in empty like I was, the chemical would have created what the newspapers called ―a kill zone with a fifty-mile radius‖ where nothing would grow for at least thirty years. So, if there‘s anything good to come out of this story (besides my being in a position to save America later on), it was that. The cops finally found me, naked, shivering and blind in a concrete culvert near Butler, Pennsylvania. That‘s nearly fifteen miles away. I have no idea how I got there. My sight returned (much to the surprise of the prison doctor) some time later, and being able to see the people I met in the gray bar hotel was clearly instrumental in what happened next. Read how he was asked by prison officials — and a very prominent American — to infiltrate an Al Qaeda sleeper cell in the prison:
―If I can‘t talk you into it, maybe someone else can,‖ the warden said. He walked to one of the walls and pushed a button. A door slid open 140
in the same way that doors slide open on ―Star Trek‖ and into the room stepped Bill Clinton, President of the United States of America. Evil incarnate! It made my skin crawl to gaze upon him. Clinton walked to the center of the room. He handed a cigar to the warden, then to each of the Freightliner guards. They all lit up, filling the room with delicious smoke. Clinton sat down in a chair facing mine — a safe, non-kicking distance away. ―How ‗bout you, Billy? Want a see-gar?‖ Clinton asked. ―Take that see-gar and stick it somewhere,‖ I told him. I laughed at the politically satirical nature of my retort, having read the Ken Starr that said where it was Clinton actually did enjoy sticking them things from time to time although it did seem like a sad waste of tobacco to me. (Actually, out of all the things that asshole Clinton did while he was president, that probably made me madder than anything. Of course a man‘s gonna chase after the little fat girls from time to time. A man ain‘t a man unless he‘s chasin‘ down some freelance tail. It‘s all a matter of what you DO with it when you CATCH it. And Bill Clinton weren‘t no gentleman. Now, I don‘t blame him for lying! Hell, that‘s what men DO when they‘s caught dippin‘ the wick where they oughta not be dippin‘ it. I don‘t even blame him for lying to the court about it. It‘s their job to prove you did it, not yours to prove it for ‗em. And the merciful God in Heaven above knows I put MY hand on a Bible or two (actually, 17) in my time and swore I didn‘t do what God and me BOTH know I did. So it ain‘t that! And neither do I really blame him for messin‘ up the little fat girl‘s purty blue dress for her, though the least thing a gentleman shoulda done was at least NOTICE he landed a shot on the cloth and offer her a tissue or sumthin‘. No, the thing that gets me madder than a wet skunk is the way he wasted a perfectly good cigar by puttin‘ it – up THERE! And this weren‘t probably no Swisher Sweet or Rum Soaked Crook or any other cheap cigar made from the floor-sweepin‘ leftovers from when they makes cigarettes with all the wood chips and rat poop and toenails what goes into them cheap stogies that you can git over the counter at the truck stop for $4 per box. You just GOTTA know that the President of the United States is gonna be chewin‘ on some FINE cigars. Maybe even CUBAN, although they‘s illegal. So the thought of this red-cheeked, soft-handed, bulby-nosed asshole treatin‘ a $35 cigar like a 75-cent tampon made me right sore. Still does.) 141
―I like your spirit,‖ he said with that little chuckle that made real Americans want to strangle him. ―You from Arkansas by any chance?‖ I told him I was from Iowa and that the one by-God reasons that Iowans tolerate the state of Missouri was that it kept Iowa from having to bump borders with his God-forsaken hell hole of a state. Clinton looked back over his shoulder at the warden. ―This here‘s shithead‘s a sassy one, ain‘t he?‖ ―Want me to have Bingo and Chuck knock some of the sass out of him?‖ the warden asked and that‘s how I learned the names of the two Freightliner guards. ―Naw, I don‘t think that will be necessary once our friend here understands just what it is America needs for him to do,‖ Clinton said, and then he put his elbows on his knees and leaned toward me and for just an instant I thought I might be able to kick the cigar out of his yap. I tried, but he jerked his head back just out of reach of my pointy yellow toenails. ―I don‘t gotta understand one single goddam thing,‖ I sneered. ―I happen to know fer a fact that you is a ‗lame duck‘ and that last month America finally wised up and voted you out of office and that in just a little bit more than a month there will once again be an honorable man in the White House when George W. Bush Jr. takes that there oath of office and becomes the rightful President of these United States that I loves so much and that you have beslimed with yer filth. So whatever yer selling, Bubba, I sure as hell ain‘t buying.‖ ―Oh, I think you‘ll buy it once you hear what it is, Billy. Tell me. How much do you love America?‖ Well, I told him how much I love America. I love it from sea to shining sea! I love its purple mountains‘ majesty and its amber waves of grain. I love it from California to the New York island, because THIS land was made for you and me! THAT‘s how much Billy Big Rig loves America. ―Then you don‘t wanna see it destroyed,‖ Clinton said with a serious look on his face. ―That‘s why in 1992 I voted for George Herbert Walker Bush,‖ I said. ―And that‘s why in 1996 I voted for that great American Bob Dole, and that‘s why last month I woulda voted for that brave warrior George W. Bush Jr. if convicted felons was allowed to vote, you draft142
dodging, pot-non-inhaling, barbeque-eating, lesbian-marrying, uglydaughter-fathering, cat-owning, poor excuse for a yellow-livered Democrat,‖ I snarled. Bingo and Chuck started toward me with mayhem in their eyes but they was halted by an upraised presidential hand. ―That‘s just the kind of attitude that might keep you alive – in Afghanistan,‖ Clinton said with that goofy-ass smile on his face that always made me want to punch the TV. ―Why in the hell would I be going to Afghanistan?‖ I asked. He told me. And along the way, Billy teaches you proper public bathroom etiquette:
Of utmost importance is the ability to ignore the sounds generated by other users of the public facilities as well as their accompanying odors. Public rest rooms is, by their nature, loud and stinky places. (This is especially true in Texas, home of the enchilada pie.) You needs to keep in mind that this is ain‘t the time nor the place to be a critic! There are certain sentiments you would not wish to utter upon hearing the butt trumpeting of a fellow rest room user. For instance: – Yow! Gabriel‘s Trumpet! The Good Lord‘s calling us home! – I‘ll bet YOU feel better now! – Do you want fries with that? – That‘s the buzzer! It‘s half-time and the Knicks lead the Celtics 6857! – Lord, fella… Whatever it was you ate, don‘t eat it again! And there is sentiments you would not wish to utter when you makes the porcelain ring with yer own hardcore poop blasts: – Funny. I don‘t remember eating that! – Yikes! I wish I had eaten something that smelled this good! – Yes SIR, Mr. President! – Mommy! Come wipe me now! – Hey! Corn! Utterances like those described above is not only silly, but they could lead to a physical altercation with that dangerous looking dude you saw hunkered down in the corner when you first came in. What NOT to say to a cop when he pulls you over for speeding:
Don‘t Be a Jerk to the Cops! When the cops pull you over – and the cops WILL pull you over – get off yer high horse and knock off the attitude. I learned this early on in my career, including one incident I‘ll talk about later that ended up with me getting married. But please understand that because yer a truck driver, the cop is already expectin‘you to be an asshole. Do not prove him correct! Now, from personal experience, here is a list of things you should never, ever, NEVER say to a cop when he walks up to the side of yer truck after he pulls you over: **** Do I know how fast I was going? Yer the idiot with the radar gun, stupid! You tell ME how fast I was going! Does yer mama know yer a cop? She didn‘t say nothing to me about it when I had her ankles up by her ears back there at the truck stop. Oh, good! A moron in a cop hat! Shit! Now I‘m gonna have to break that promise I made to my probation supervisor about not beating up cops no more! Listen, officer, before you start asking questions – what‘s yer blood type and have you been tested for AIDS? No, I ain‘t staring at you officer. I‘m just trying to figger out how much of yer corpse I‘m gonna be able to fit in my cooler. Would you mind telling me yer name, officer? Next time I‘m in Washington, DC, I wanna check and see if it‘s on the Police Memorial yet. Yeah, you can see my license and registration… just so long as you can get to yer gun before I get to mine! Whatsamatter, officer? Didn‘t I get yer wife home by curfew last night? Oh, and when you DO talk to yer wife, make sure and tell her the little bumps she noticed on my crotch was ―crabs‖ and not ―herpes. And then, see for yourself even AFTER he saved America how the Government still wants him dead. ―That‘s fine, Billy! That‘s fine,‖ President Bush Jr. said. ―Now, I‘m gonna have a couple agents drive you down to Bethesda. From there
you‘re on your own to start your new life. I‘d ride along but I‘m pretty busy being a war president and all. It‘s hard work.‖ I told him I understood and I went to shake his hand. He pulled back. ―Sorry, Billy, but you kinda squeezed my hand a little too hard when we met. Hurts some.‖ I told him I was sorry, that sometimes I was just a little bit too manly for my own good but that I was sure he understood how that was being a manly man his own self and that I hoped to meet him again sometime. ―You never know, Billy,‖ he said. ―You never know.‖ Then he turned to one of the Secret Service guys. ―Make sure, OK?‖ he said. The Secret Service guy nodded. Well, they showed me back out to the presidential limo and we all got in. The two guards faced me in the jump seat and we rolled out of the presidential compound. I just watched the scenery roll by. After a few minutes the driver spoke up. ―This far enough?‖ he asked one of the guards. ―This should do,‖ the guard answered. ―OK,‖ the driver said. Then his voice changed some. ―Oh no!‖ he said. ―The ‗Check Engine Soon‘ light just came on. I‘d better pull over and check the engine!‖ ―Yes. Check the engine,‖ one of the guards said. ―Good idea. Pull over and check the engine,‖ the other one said. ―Check it soon,‖ the first one said. ―That is what I will do then and I am currently pulling over to check the engine,‖ the driver said. ―Want me to take a look at ‗er for ya?‖ I asked. ―I used to drive a truck and know a thing or two…‖ ―No,‖ one of the guards said, a little too abruptly I thought. ―Classified,‖ the driver said. ―Secret engine,‖ the other guard said. ―Our eyes only.‖ I figgered that made sense, this being a presidential limo and all. Wouldn‘t want the evil-doers having information about how presidential limos operate. Who knows what they could do with knowledge like that?
The car rolled to a stop. I looked around. It was a beautiful area. Lots of trees. No signs of civilization for miles and miles. ―Tell you what,‖ the first guard said with a smile. ―Why don‘t you hop out and stretch your legs a bit while we check it out?‖ I said I thought that was a pretty good idea as the lemonade I drank back there at Camp David was already putting a hurt on my bladder. I got out of the car and stretched then headed into the woods a bit. It was quiet, peaceful and very deserted so I didn‘t worry about nobody seeing me when I walked over to a tree, pulled down my zipper, produced ―Little Billy‖ (although the nickname is clearly just a nickname as dozens of women who know better would swear to…) and proceeded to wet down the side of a tree. That‘s when I heard the first gunshot. You’ll learn about his many marriages, his thoughts about modern day truckstops and his politically incorrect philosophy of life when you read “Undercover Trucker: How I Saved America by Truckin’ Towels for the Taliban.” AVAILABLE AT MOST MAJOR ONLINE BOOKSELLERS AND:
Parky Bill’s Parkinson’s Place http://parkinsondiary.com
HUNKY DUNK It was a state of mind as much as it was a song title. And it made a couple of simple Iowa boys very, very rich indeed. “Hunky Dunk” is the story of Mud and Jake Klemper. They live in the little city of Slope Oak, Iowa, along the Mississippi River. They would have lived and died unnoticed had it not been for a sound Mud heard one day while rocking on his front porch rocking chair. It was a summer day — hotter than a lot of them, not as hot as some, and definitely not very humid. It helps to remember that fact. Sometimes here in Slope Oak the summer afternoons are so hot and muggy you feel like you could grab yourself a handful of air and just wring the dirty water right out of it. But this wasn’t that kind of day. It was a dry, hot day. And I was sitting on the rocking chair on the front porch. There must have been a loose board or something under one of the rockers, because every time I rocked back and forth, the chair and the board made kind of a “hunky dunk” sound. Sort of like this… HUNK-ee-dunk HUNK-ee-dunk Now, if it had been a humid day, the board wouldn’t have been dry enough to make that sound. And if it had been rainy, I would have been in the house and not on the front porch rocking and hearing that “hunky dunk” sound over and over again. Funny, ain’t it, how a twist of fate can hang on something so simple as whether or not it 147
was humid, dry or rainy outside? Life is full of stuff like that, I’ve come to learn. It was such a nice day and since it was Sunday, I didn’t have to work since the gut factory was closed on the Lord’s Day. I had absolutely nothing on my mind and nothing to do but drink cheap beer and rock the hot, dry afternoon away on that front porch rocking chair. For hours I sat and drank and rocked and sat and drank and rocked with my mind a total blank and that “hunky dunk” sound just sort of working its way into my subconscious. And I started sort of repeating that sound in my head as I was rocking. “Hunky dunk, hunky dunk,” you know how it’s like when you get an idea that just won’t go away? So anyway, I was just sitting and rocking and saying “hunky dunk” to myself when I just started to, I guess, make stuff up. I mean, only an idiot would just sit there hour after hour saying “hunky dunk” to himself in his head without trying to make some kind of sense out of it, right? So I figured I’d try to make up some words to go along with it. I suppose it’s because I was feeling pretty good that day. None of the neighbors had been mad at us for a while. Jake was busy in the kitchen whipping up a nice apple pie to go with the chicken we were having for dinner, and it was such a bright, clear, hot sunny day that everything seemed pretty much OK. And then I decided that “hunky dunk” might be a pretty good word to describe such a feeling as I had. So, as I rocked back and forth, I just started adding words to the “hunky dunk” sound the rocker and the loose board were making. “Clear blue sky is hunky dunk.” “Apple pie is hunky dunk.” “Birds and bees are hunky dunk.” “Cherry trees are hunky dunk.” Yep! That’s where those Grammy Award-winning lyrics came from. And I started singing them out loud. I must have been getting pretty carried away with myself, too, because Jake came out and yelled at me to shut the hell up. Eventually, Jake caught on to the song and together they recorded it. It became a hit single and led to a whole new world being opened up for the Klemper brothers, who maintained their state of simple grace despite it all.
There were other strange things about that hotel room, especially in the bathroom. Now we’ve had indoor plumbing since 1964, so I know a toilet when I see one. But there was this thing next to the toilet. It looked kind of like a toilet but without a flip-down seat. And when you press the lever, a jet of water comes out at you. So, I figured out what it must have been used for. But I guess I was wrong. That next morning I was washing my face in the thing when the housekeeping lady waltzed in. She saw me soaping up my face and rinsing it off in the jet of water and I thought she was fit to have a stroke. She said that’s not what a “bi-day” is used for. I asked her what it was for then, and she just got all flustered and left the room. “Foreigners!” Jake giggled as he sipped his cup of hotel room coffee. I giggled too, but to this day I still have no idea what kind of contraption I was washing my face in. Well, the memo from the TV guy said we would have the morning and afternoon to scout around the city some but we decided to just stay in the hotel as it pretty much had everything we wanted. Then at about 3 in the afternoon the phone rang and the guy at the desk told us there was a limo waiting for us. After he explained that it was just another word for a big car, I agreed to come downstairs. Jake and I were dressed to the nines, each in our brand new pair of blue jeans and our favorite flannel shirts. The guy who met us at the limo must have been pretty impressed too because he looked at us and said, “Is that what you’re gonna wear?” Well, Jake and I hate to brag, so we just nodded and smiled. The people at the TV show were pretty impressed, too. They also asked if that was what we were gonna wear, and frankly, I got just a little bit tired of answering the question after awhile. Finally I said, “We could go on naked, if you want us to!” Jake accentuated the point by unbuttoning his flannel until the wardrobe lady said we were just fine as we were. I think she got a little scared by the chicken/egg tattoos on Jake’s chest. Can’t say as I blame her as I been looking at those things for years and they still give me the willies. They took us to what they called the “Green Room” although I didn’t see anything green in there except for Jake’s
shirt. There was a couple other people in there that were gonna be on the show, including a lady singer and some people who brought their pets on the show to do tricks. And that’s a good thing, because at first Jake couldn’t take his eyes off the lady singer and I could see she was getting a little nervous about it. So I asked one of the pet owners about his dog and Jake started petting the dog and everything worked out just fine. Well, we got to go on last, which is good because we got the donut cart to ourselves after everyone else was gone. Finally we got called on. And this Dave fella was just as nice as nice could be. He just laughed and laughed and laughed the whole time we were out there. I told them how I wrote the words and how Jake came up with the music and how we had gotten an agent to help us get to the bottom of this “alternative rock” deal and Dave just sat there and laughed and laughed and laughed! Jake kind of surprised me a little, like he was sort of warming up to the whole thing. First he pulled up his shirt sleeve and made the naked girl tattoo on his forearm dance while the little bald-headed music guy played a hootchie-kootchie number. Then he offered to wrestle this Dave fella to see who was gonna get to ask the lady singer out to dinner after the show. Dave looked a little scared at first when Jake started peeling off his shirt, but then I told him Jake was just kidding even though I knew he was dead serious. I got a little mad when Jake pointed over to the little bald-headed music guy and said something about how his head looked just like mine only without dandruff scabs, and it was only the fact that we were on TV that kept me from punching him in the mush. We went back to the hotel, had another dinner, ordered up some whiskey, and took the return flight back to Iowa the next day without incident. As their fortune grew, so did their fame. People were drawn to the brothers as if they were modern day messiahs. Then, along came Sammy.
“Look,” I said, “there are rules and regulations and…” “Sometimes you have to change the rules. Make them work in your favor.” The voice came from behind me. It was a highpitched, kind of whiny voice with an accent like I’ve never heard before. I turned around and saw a little guy standing behind me. He was wearing one of those three-piece suits like you see bankers wearing. He had flaming red hair, except for there wasn’t that much of it. His black glasses and pale face made him look kind of like that Woody Allen fella you see on TV sometimes. Behind him, parked on the street in front of our doublewide, was a Volkswagen bus, like the kind hippies used to drive in the 60s. “Who the hell are you?” I asked. He extended his right hand, a girly, small right hand. I didn’t take it. He just held it out there. “Sammy Lund,” he said, his hand hanging out on the end of his arm. “I’m here because I have to be.” I just looked at him. Then I heard Jake from behind me. “What’d he say he was?” “Shut up a minute,” I growled over my shoulder. Then I returned my attention to the little fella. He finally got the idea I wasn’t gonna shake his hand and lowered it to his side. “Now, what did you say your business with us might be?” I asked, making it clear by the tone of my voice that I was not feeling particularly friendly at the moment. “I’m here because I have to be here,” he said. “I’ve been drawn to you. I’ve been called to you. You and your brother are the freaking Star of Bethlehem and I have followed you like one of the Three Kings of old. I am here because I’m on a mission, a quest, a crusade…” “We don’t need no religion,” I started to say. “You and your brother, you are it! You are what’s what! You are the be all to end all, but you’re not focused!” He sort of spat out that last word. “You’re here, you’re there, you’re everywhere and no one is driving the train!” “Mud, what’s he talking about?” Jake asked from behind me. The little guy looked past me at Jake and smiled. He walked past me and over to where Jake stood with his hand still stuffed into the box of cereal. “Just look at you,” the little guy said, his voice almost sounding like he was singing. “You are a god! A big, wild, scruffy god with hair all over your head and, what, I don’t know, things in your beard!” He put his hands on Jake’s upper arms and gave
him a shake. “You are wild, you are wonderful, you are genuine!” As the little guy shook him, Jake looked at me. His features started to darken. “Mud. I think I have to kill this little man now. He’s scaring me.” This sentiment put a bit of a chill down my spine. Now, I can’t honestly tell you whether or not Jake has ever actually killed a man before. For one thing, there’s no statute of limitations on murder, whether or not the rat bastard had it coming and even if there’s no way anyone is ever gonna find the body. Still, laws are laws. “Hold your temper, Jake,” I said as I walked over and pulled the little guy off of my brother. “Mister, we ain’t got time for this,” I started to say. But he put his hands on my upper arms, too, and started shaking me like he was doing to Jake. “And you,” he said, “just look at you! Beard cleaner than your brother’s, but still wild and free! And a big, shiny head all bald and grand and natural! My God! You two sing to me of America! You are both gods! Big, scruffy gods! You are kings!” I was starting to reconsider my admonition to Jake, when the little guy finally let me go. “I am here because you need me! I am here, because I need you! We are, as of this moment, a single unit! A triad! A cooperative!” “Mister, you’d better start making sense…” I started to say. “Good!” he barked. “Sense! You want sense! How’s this for sense?” He pointed a finger in my face, and for a moment I considered biting it off. But I don’t think that would have stopped him. “You two are, what? Singers? Wrestlers? TV stars? A cartoon? Faces on food packages? None of the above? All of the above? What? What are you? I don’t know! You don’t know! You want to say something but you don’t know what. You don’t know how! Nobody knows because there is no FOCUS!” He shrieked out that last word. “There’s an America out there that wants to love you! To follow you! But they don’t know how to love you or follow you because you don’t tell them how! They want to eat you up! They want to put you in a bowl, cover you with milk, and eat you by the spoonful…” “We already got a cereal,” Jake said, holding up the box. “That’s good! A cereal! But that’s not what I’m talking about. You are not faces on a cereal box! You, Jake and Mud Klemper, are forces of nature! You are a comet, an earthquake, a tidal wave.
An asteroid crashing into the earth leaving not death and destruction but love and happiness in your wake.” The little guy was walking between me and Jake, waving his arms, his voice getting higher and higher as he continued. “But there is no direction to you! You are here and then you are there. You have no focus! That’s where I come in! I am the lens that will focus your sunbeam into a single, cutting pinpoint of whitehot light. I am the one to show you how to harness the thing that you are to where every small child in America will go to bed at night praying to Almighty God above that he or she will turn out to be like you.” He was sweating now. He stopped for a moment and smiled, his even, white teeth glimmering in the afternoon sunlight. I started to get the idea that I knew what he was talking about. “Look, Mr. Lund did you you say your name was? We already got us an agent and a bookkeeper and all that…” “Yes!” he screamed. “And they’ve done well by you! You have money, you have property. You even have worldwide fame! But you haven’t evolved into GLORY yet! You have THINGS! But they haven’t given you focus!” “But we’ve been doing all right,” Jake said. “We already got more money than you can shake a cat at…” “Ah! But are you BIG?” Jake looked at me with an expression that told me he had no clue whatsoever as to how to answer that question. This Lund fella started preaching. I swear, that’s what it sounded like. “Mud and Jake Klemper. Do those four words conjure an image? An idea? If I were to say those words in Botswana or Pago Pago would the unwashed savages’ eyes light up with recognition? When Egyptian families sit down to dinner tonight, will the name of the Klemper Brothers come up in casual conversation? Tonight, as Eskimo fathers cut blubber from the bodies of walruses they’ve killed, will they speak to each other of the Klempers? No. No, I say! And until they do, you’ll never be BIG! I’m here to change that! I’m here to make you BIG!” I stared at the little guy. I have to admit, my mouth was wide open in surprise. “Mud, the little man scares me,” Jake said. “Please, let’s kill him and go have dinner.” I shot a glance at Jake that he knew from experience meant “shut your cake hole”. Then I looked at Lund. “How you gonna go about doing that?” I
asked. “How are you gonna make us that big?” He threw both arms in the air, tossed back his head and screamed the word. “MARKETING!” Then he put his hands on my shoulder and his face within inches of mine. “Let me do what I have to do, what the universal force compels me to do. And by this time next year you and your brother will be BIG! Michael Jordan BIG! Bugs Bunny BIG!” “Three Stooges big?” I asked. “BINGO!” he screamed. Well, all I could do after that was invite him to come in and have dinner with us. But success didn’t sit well with the Klempers. They felt the need to get back to what they were — simple Iowa brothers with a special gift. A gift their father said they must never use. Now it’s not I think that we were really anything special. I mean, we certainly weren’t the sharpest nails in the hardware store or anything like that, if you know what I mean. And I suppose that some of our success had to do with being at the right place at the right time and all. I suppose you could wonder if breeding had anything to do with it. One thing us Klempers are real proud of is the fact that we are Klempers. There’s always been something special about me and my brother. Pap said there was a special glow in the air the night Jake was born, and same thing for the night I came into the world. It was even wrote up about in the paper. Scientists said it was probably swamp gas or something. Pap said it was just a coincidence, not the fuckin’ Star of Bethlehem or anything like that, but still a guy can’t help but be proud when the sky lights up on the occasion of his birth. We’ve always sorta felt set apart from the folks that surround us. We try not to let it go to our heads or nothing, but that’s just the way it is. We’re Klempers and we’re proud. I guess most of that attitude comes from our father, the late Luther Klemper. Our Pap was a proud man. And he had a lot to be proud of. His family came over from some country in Europe back in the 1800s and decided to settle in the rich farmlands of eastern Iowa. Now that might seem kinda peculiar since none of the pioneer Klempers had 154
farms in Europe or even knew so much as a tinker’s damn about dirt, except for the fact that it tended to gather under their fingernails. They were mostly beggars and criminals, truth be told. And the further truth is that they left Europe because it was either that or go to jail. But they had it set in their minds that they were gonna be the most successful cotton farmers in the whole state of Iowa. Along the way, they become the tag-team wrestling champions of the world (for a few minutes), visit a sex club in Japan, inspire a line of canned spaghetti and breakfast cereal, a cartoon series, and create a conglomerate that would put Donald Trump to shame. But could they ever get back to the simplicity they craved? FIND OUT IN “HUNKY DUNK” AVAILABLE AT MOST ONLINE BOOKSTORES AND THROUGH THE AUTHOR’S WEBSITE.
Parky Bill’s Parkinson’s Place http://parkinsondiary.com
Published on Feb 20, 2012