My World of Parkinsonian Delights

Posts tagged “Parkinson

Weird Things, Man! Weird Things!

Weird things are happening, man!

So I’m laying there in bed this morning, not asleep but not quite awake.  My eyes are closed.  Out of the corner of my right eye, I see a small, red flash.  Like an LED.  Then a green flash.  Then a red one.  Then a green one.  A red one again.  Then a green one.  Then I realize there’s nothing in my room that flashes red or green above the closet, where these lights would have been.  I snapped open my eyes and looked.

Nothing.  It was 4:30.  I closed my eyes, and an instant later it was 6.

Raven was still on the floor.  “OH MY GOD,” I thought… “GAIL DIED DURING THE NIGHT!”  (See, Gail usually gets up to pee around 5:30, gathers the dogs, takes them out, then craps out on the couch until I get up.)

Raven had been lying motionless on the floor but she quickly noticed me looking at her.

“JOY IN THE MORNING!!!” She jumped to her feet and came wiggling over to my bed.  She started whining.  “Gotta pee, dad, gotta pee real bad!”  Then she went and bumped Gail’s bed.  She was not dead.  She was only sleeping.

“You getting up,” she asked me.  “Yeah,” I said.  “Stay put for a little while, get some more sleep.”

So I got up, did the usual morning things, recorded two podcasts for work, recorded and posted Episode #11 of “No Doorway Wide Enough” for Podiobooks (it’ll be on the site tomorrow), and noticed that my right hip feels like I fell on it.  I don’t recall bumping it, falling, or doing anything to it.  It doesn’t hurt to touch, it wasn’t bruised, but every step I take, it feels like I got a hip pointer playing defense for the Packers (why can’t I ever have a dream about playing with the Packers, instead of this dead relative, bad radio station, truck driving crap I have every night?)

So, two mysteries today.  The mystery of the flashing red and green lights, and the mystery of why my freakin’ hip hurts.

Sometimes, I think Gail hits me in my sleep.  She says she doesn’t and if she ever wants to, she’ll wake me up first.

Still…

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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. 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…. hawwwwwwwwk….. 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.

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The Single Most Frustrating Thing About Parkinson’s

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, “illlluuuuuuuuuusion” 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.  🙂

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.

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Pills Don’t Work Unless You 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.

He wanted his desk back.

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.

Now… have you seen the offer on the bottom of the front page for 50% off “No Doorway Wide Enough”?  Have you taken advantage of that yet?  Why not?  You don’t want to anger a demented person!

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Mark Your Calendars for July 14

That’s when the first five segments of “No Doorway Wide Enough” will be released as an audio book at the renowned audiobook website, “Podiobooks.”

Drop by, set up a free account, indicate how you want to have your copies delivered, and the rest is up to Podiobooks.

Once I’m done with “No Doorway,” next will be “Undercover Trucker.”  Then, maybe, “Hunky Dunk.”

Remember.  This is a FREE service.  You don’t HAVE to donate.  But if you do, whatever amount, I get 75% and that will go directly to the National Parkinson Foundation and the Charles DBS Research Fund at Vanderbilt University Medical Center.