In fact there’s a whole boatload of SCOPA tests that measure the various symptoms in the constellation of Parkinson’s disease… SCOPA-AUT for autonomic symptoms (excessive sweating, swallowing difficulties, etc.), SCOPA-PC for psychiatric complications, SCOPA-PS for psychosocial consequences of Parkinson’s disease, SCOPA-SLEEP for sleep problems related to PD, and SPES-SCOPA which mirrors the Unified Parkinson’s Disease Rating Scale (UPDRS).
So, let’s go through each of these and see where I am on this late July morning in 2010.
Gail helped me with the SCOPA-COG test last night. It measures cognitive areas such as memory, attention, executive function and visuospatial skills. I scored 27 out of 43 possible points (62.8 percent). I aced the attention and visuospatial questions, missed only 2 pts. in the executive function area, and truly “screwed the pooch” in memory. So my total SCOPA-COG score is slightly below the average of all PD patients who took the test in the initial study (me=62.8%, them=65%, control group=74.6%), but my memory score was well below average for the same group of PD patients (me=36.4%, them=42%, control group =52%).
So, SCOPA-COG shows I’m doing fairly well in three of the four areas they measure, and poopy in the area of memory.
This is a questionnaire with 23 questions where each question has a value of 0 to 3 points (0=never, 3=often). It’s broken into six areas of autonomic function — gastrointestinal, urinary, cardiovascular, thermoregulation, pupilomotor dysfunction, and sexual dysfunction.
My total score was 31, which places me in the “severe” group.
Gastrointestinal – 8 – severe
Urinary dysfunction – 11 — severe
Cardiovascular dysfunction — 0 — PRISTINE!!! 🙂
Thermoregulatory dysfunction — 4 — severe
Pupillomotor dysfunction — 1 — severe (my eyes take forever to adjust to bright light)
Sexual dysfunction — 6 — severe
Bottom line — My PD has progressed to the point where I have severe autonomic difficulties. Big news.
This one measures any psychiatric problems a Parky may be having. Seven questions are scored 0 to 3. The total score range is from 0 to 21.
The average of all Parkies who took part in the initial study was 3.2. I scored a “6”.
In this questionnaire, they inquire about problems which we Parkies may encounter as a result of our illness in the areas of (social) activities, contact with other people, and on an emotional level. It’s 11 questions that score from 0 (not at all) to 3 (very much).
I scored a total 17. You get the final score by getting a percentage — 17 pts/33 possible. I came up with 51.5%. That places me in Hoehn & Yahr Class IV.
By means of this questionnaire, they assess what extent in the past month we Parkies have had problems with sleeping.
Thanks to modern chemicals, I’m not having any trouble in this area at all, scoring only 15.2 percent out of the possible 33 points.
This is the one that mirrors the UPDRS.
My Activities of Daily Living Score is 10, which also puts me in H&Y III.
And there you have it!
To sum up…
The SCOPA-COG says my cognition is pretty well preserved, except for immediate recall memory, which is in the “severe” category.
SCOPA-AUT says I’m having some pretty severe autonomic difficulties, except in the area of cardiovascular function.
SCOPA-PC says I’m a bit nuttier than the average Parky, but nowhere near the high end.
SCOPA-PS says I have some pretty severe psychosocial complications of the disease.
SCOPA-SLEEP says, thanks to my nite-nite pills, I’m a pretty good sleeper.
SPES-SCOPA says my DBS is doing a fairly decent job controlling my motor symptom and activities of daily living, but my disease continues to progress. As it will.
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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 self-publishing 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 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 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.
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It’s all just a day in the life.
First Item: We’re two days away from the launch of my Podiobooks version of “No Doorway Wide Enough.” I have five episodes online and ready to go and will add an episode a week. It’s free unless you WANT to make a donation, so there’s no need for tightwads to not hear the story, even though no donation means no research funding for the National Parkinson Foundation and the Charles DBS Research Fund at Vanderbilt University Medical Center. One thing I’ve discovered since offering two of my books for free and giving 25% off the $5 price of my Smashwords books, people LOVE the free stuff and don’t want to pay the $3 for “No Doorway.”
I wish I could afford a real marketing campaign. I really believe in this book and think it could be a great fundraiser. But I can’t be the only one spending money on it.
Just got out of the shower. Realized I had forgotten to rinse the soap from my underarms and nether regions. Had to get back in the shower. Chalk up another one for Team Dementia.
Getting a new dryer today. The old one, which came with the house when we bought it in 2002, gave up the ghost Thursday. It’ll be delivered between 3:30 and 5:30 this afternoon, so “Yippy” and “Yappy,” our very brave guard dogs, can wait in the bedroom while it’s being delivered.
Decided to stop buzzing my scalp when I shave. I like the slick baldness of it all, but I noticed over the weekend that the blades are irritating the skin covering the deep brain stimulation wiring on the left side of my dome. Last thing we want is exposed wires. That would be bad.
Slept MUCH better last night since I took my nighty-nite pills. Still had trouble dropping off to sleep, so I got up at 10:30 to scarf down another ambien. Gail was up with the very brave Shiloh who heard a firecracker right after we went to bed and tried to claw her way through the doggy gate, over the counter, knocking down stuff and whining like Osama bin Laden himself was chasing her. By 10:30, the situation had settled down and Gail was able to secure Shiloh in the kitchen and come back to bed. And the second ambien did the trick. So I’m feeling considerably sharper this morning.
So there we have it! Don’t forget about checking out Podiobooks.com.
More machine than man? Nah. But it was three years ago yesterday that I first had my DBS neurostimulators turned on. Here’s how I tell the story in my book (you knew I had a book, right?) “No Doorway Wide Enough.”
Day Trip for Programming
July 10, 2007
I overslept this morning. Got home from Nashville at around 8:15, went to bed shortly after 9, got up at 4:45 a.m. I’m usually up by 4. It’s an occupational hazard. Now that I’m taking the train every day, I gotta be at the train station by 5:51 in order to get to work at or near 7 a.m. No time for coffee this morning, and that probably has more to do with my sense of ennui than does the fact that my Deep Brain Stimulation is turned on, programmed and functioning.
The flight to Nashville was uneventful, except for the young father and his two darling, precocious little treasures who sat in the seats in front of me. I’m guessing they were around 2 and 4 respectively and neither child has yet developed an “inside voice.” They weren’t crying or fussy. But they SQUEALED the entire flight.
“Oooooh, Daddy! Lookit this PICTURE, Daddy! Lookit the PICTURE of the KITTEN, Daddy! Lookit! Lookit! Awwwwww! Lookit the KITTEN, Daddy!”
Daddy was reading a magazine and only nodded the most perfunctory acknowledgment to his daughters and the picture of the kitten.
Grabbed a cab at the airport with a garrulous country boy driver named “Steve” and we chatted like chums all the way to Vanderbilt’s Medical Center North. I made my way to the 3rd floor neurology department, checked in, took a seat, and waited.
I resolved that I would try to be a better, more communicative patient during this session than I was during the initial brain surgery. For instance, as I think back, when I told Dr. Charles that I was feeling, “nausea, but that’s not the right word for it” during the test stimulation, I felt like I wasn’t really communicating the effect the stimulation was having.
Chandler called my name and led me back to an examining room, where Dr. Charles was waiting. I brought along my Access Review Model 7438 Therapy Controller (It looks like a garage door opener, and it will be my faithful friend and constant companion for my remaining days) and hopped onto the table at Dr. Charles behest.
“Remember when I said during the test stimulation that one of the side effects was nausea, but that wasn’t really the word for it,” I said without waiting to be asked. “I’ve been thinking about it, and in retrospect I think the best way to describe that feeling would be just a general feeling that something ‘wasn’t quite right.’”
Dr. Charles frowned and looked at Chandler.
“Scratch that paper we were writing on DBS and Nausea,” he said grimly. Then he smiled.
Dr. Charles produced a controller that made my little garage door opener look puny by comparison. He explained the programming process and said that his gadget would be able to tell him if the leads were situated correctly, and if there were any problems with the hardware. They were, and there weren’t.
Each lead has four electrodes. It’s necessary to test each of the electrodes for efficacy and side effects. That’s what we did. First with the left brain, since my right side is the one most affected by PD symptoms. The first electrode was able to reduce my symptoms somewhat. Then the side effects kicked in with a buzzing feeling in my right hand and foot, and double vision as my right eye went off its axis. The second electrode eliminated my PD symptoms completely and the worst side effects consisted of a buzzing in my fingers, foot and lips and tongue. Electrode three didn’t score as well, neither did electrode four.
He put the control magnet on my right-sided neurostimulator and repeated the procedure. The side effects weren’t as pronounced, and it seemed as if the second electrode was the “money” electrode on that side as well.
When we were finished, Dr. Charles said the session was a great success. He turned on both neurostimulators and put them at a low setting, directing me to continue taking my Stalevo as before. I’ll go back in two months for another programming session to get the voltage kicked up a little and that is when we’ll start drawing back on my PD medications.
Dr. Charles had a flight out of Nashville International as well that afternoon and offered me a lift to the airport, which I gladly accepted. We talked of many things, including his idea for a web forum of some sort for those of us in this study to use to stay in touch with each other, to touch base on therapies, and to share the latest news on the study. I said I’d be glad to spearhead such a thing.
On the subject of “other people in the trial,” Dr. Charles shared an experience that happened during a recent surgery with another of the DBS-randomized participants. Actually, it’s something that didn’t happen, but might have had not “better sense” ruled the day. One of the patients – he didn’t say who, since we all (technically) don’t know each other as we maintain our anonymity – mentioned to him during a subsequent programming session that he had entertained the idea of playing a bit of a joke on the good doctor during his DBS surgery – specifically during the electrode programming session.
“He said, ‘I was gonna pretend to be paralyzed on one side,’” Dr. Charles said.
“Well THAT would have been a good idea,” I said. “Very clever! Very funny! And frankly, I entertained the same idea once… for about a half-second. Then I thought that you guys might have a syringe full of ‘something’ that you would immediately inject into the IV line that might save my life if I were REALLY having a stroke, but might otherwise kill me if I were not. And knowing that my self-satisfied chuckling might be the last sound I ever heard, I decided against playing that particular joke on you.”
“What is it with you guys?” Dr. Charles said, shaking his head. “You’re laying there, on the table, your skulls open, having brain surgery, and you’re thinking of jokes to play.”
“Gotta do something,” I said with a shrug.
He dropped me off at the door leading to the Southwest Airlines portion of the terminal, I thanked him for the ride and went in.
The flight home was uneventful, save for a young girl traveling by herself, taking her first plane trip to see her grandmother in Albany. She kept up a steady litany of questions to her seat mate and harried flight attendants.
“How can you tell if a plane is going to crash?”
“Does lightning strike airplanes?”
“Is there a ramp at the end of the runway?”
I was grateful when the flight attendant said we could use approved portable electronic devices. My iPod drowned out the nervous child for the remainder of the flight. So did a double scotch on the rocks.
I was celebrating. I made it through the DBS procedure and was sailing down the downhill slope. No more procedures until September.
Life is very, very good.
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Bill Schmalfeldt Parkinson’s Disease Expert and Author
Bill Schmalfeldt is living with Parkinson’s Disease and Parkinson’s Disease is no laughing matter! Or is it?
Parkinsons Disease Expert Bill Schmalfeldt can share his story of Parkinson’s Disease and deep brain stimulation surgery with your listeners. He has written a humorous book about Parkinson’s disease and his surgery because he thought his story was worth telling.
After being diagnosed with Parkinson’s disease in 2000 and having experimental deep brain stimulation surgery in 2007, Guest Expert Bill Schmalfeldt wrote a manuscript about the experience. Not only could he not find a literary agent willing to look at it, publishers rejected his new book without even reading sample chapters.
Believing the story needed to be told, Bill dug into his own pockets and took the self-publishing route. As a result, a 468-page non-fiction book, No Doorway Wide Enough is now available worldwide. He’s donating the author proceeds to the Parkinson’s Disease organizations that helped him.
Book Bill Schmalfeldt, author and former radio talk show host with Parkinsons’s Disease as a Guest Expert on your show to discuss:
• Being a participant in a clinical trial.
• How to keep a sense of humor when faced with a degenerative disease.
• What to do when you have a story to tell, but agents and publishers give you the cold shoulder.
• What it’s like to be awake during brain surgery.
• What are the effects of Parkinson’s disease.
Parkinson’s Expert Bill Schmalfeldt is a funny guy. He has 30+ years broadcast experience as a DJ, talk show host, program director, news director, reporter and columnist. He began working for the federal government in 2005.
Bill Schmalfeldt Guest Expert Interview Credentials
Bill Schmalfeldt is a former radio talk show host, current government writer-editor, was diagnosed at age 45 with PD, had deep brain stimulation surgery as part of a clinical trial in 2007, and is now living with the mixed after-effects.
Bill is also the author of No Doorway Wide Enough.
Guest Expert Interview Availability
By telephone from Elkridge, MD – EDT
In person in Washington, DC or Baltimore, MD, maybe NYC
There. Maybe THIS will do some good and move some books!