My World of Parkinsonian Delights

Posts tagged “DBS

You Like COUPONS, Don’t You?

Then use THIS one to get 15% off your purchase of “No Doorway Wide Enough” from Lulu.com.

Now, don’t actually cut the coupon out of your computer screen.  That would be silly.  Just use the code BEACHREAD305 at checkout.

Remember, 100% of all author proceeds go to the National Parkinson Foundation and the Charles DBS Research Fund at Vanderbilt University Medical Center.

Enjoy a good book and help PD research.  You’ll feel good about yourself.

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Scale Measures Parkinson’s Disease

It’s called the Scale for Outcomes of Parkinson’s disease — or SCOPA for short.  It’s a great way to get a fairly accurate assessment of where one sits in the progression of a progressive disease.

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.

SCOPA-COG

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.

SCOPA-AUT

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.

SCOPA-PC

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”.

SCOPA-PS

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.

SCOPA-SLEEP

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.

Finally…

SPES-SCOPA

This is the one that mirrors the UPDRS.

The good thing is, my deep brain stimulation keeps my Motor Impairment scores relatively low — 13 pts., which puts me at Hoehn & Yahr III.

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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You Never Miss the Dopamine Until the Brain Runs Dry

“You Never Miss the Dopamine Until the Brain Runs Dry.”  Catchy title for my next book.  Except there ain’t gonna BE a next book.

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 happy, carefree guy, loving life (and apparently a plate full of veggies and fruit or something)…

Into… 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.

The National Parkinson Foundation
The Michael J. Fox Foundation
The American Parkinson’s Disease Association
The National Institute of Neurological Diseases and Stroke

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Have I Been Getting Boring?

Have I been getting boring? I’ve noticed an appreciable dip in the number of folks who view this blog each day.  What kind of stories would you like to read?  Let me know what I can do to make this a more interesting place for you to stop each day.

I’m more than a little dismayed by the reaction my attempt to raise money for Parkinson’s disease research has gotten from my friends on Facebook and the folks who read this blog.

When I last checked, I had some 163 of you on my Facebook Friend list.  I used to get an average of about 150 hits a day on this blog.  I have 50-some subscribers to my feed.  And yet, as of this moment, including myself, nine people have downloaded my FREE Audiobook at Podiobooks.

I know a few friends of mine on FB and on this blog have purchased the book in hardcover, paperback, eBook or Kindle. But frankly the response has been woeful and very disappointing.

Quite simply, this current book is my attempt to give something back to the researchers who are trying to cure my disease. I would think that people might like to help that effort in a small way. Prices range from $3.25 for an eBook on “Smashwords” to the grand $45 hardcover on Lulu.com. All the links for hard copy or e-book copies are on my author website, right here. And for the God-Knows-How-Manyth Time, every nickle I get from this book will be divided evenly between the National Parkinson Foundation and the Charles DBS Research Fund at Vanderbilt University Medical Center.

I assure you, my NEXT audiobook will be purely mercenary and I will selfishly keep all proceeds. The one after that, I will split the proceeds with my late older brother’s wife.

But this one is a special book. It is the book I want to be remembered by after I’m dead. It’s not maudlin, it’s not smarmy, it’s not a “feel-sorry-for-me” tome. It’s a self-effacing, sometimes hilarious look at the life of a guy who found out he had an “old man’s disease” at age 45 and how I’ve managed it over the past 10 years. Those of you who know me personally — my family, my friends, my former and current colleagues… you KNOW my sense of humor. Do you think I would write something sappy?

This is the last time I will ask. I really need your help. Please consider getting a copy of “No Doorway Wide Enough” in whatever format you choose. Spread the word to YOUR friends and family and neighbors.

If this year is like every other year, 50,000 new Americans will get the diagnosis I got in 2000. I want to do something to help cut that number. Parkinson’s doesn’t care who you are, what you do, where you live or how much money you make. It’s not just Michael J. Fox and Muhammad Ali and Brian Grant.

It’s me.  It could be one of your friends. It could be a family member of yours. Your husband.  Your wife.  If you’re past 40, it could even be you!

I’ve already spent a considerable portion of my own money to publish the book in its various formats, to promote it with websites and advertising and press releases.

For those of you who have already gotten your copy, thank you.

For those of you who haven’t, you still have time to take advantage of some July savings.

For my friends who have read this and just don’t give a rat’s ass… you already know who you are… I’m sorry for wasting your time.

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A Day in the Life

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.

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