My World of Parkinsonian Delights

Posts tagged “pd

I’m a BIG Boy!

I guess 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 easily-influenced person.)

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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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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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One of THOSE Days…

This feels like it’s going to be one of THOSE days.  Had trouble getting to sleep last night (yes, I took my meds), had trouble STAYING asleep (the thunderstorm around 11 pm didn’t help), kept waking up and going back to sleep until around 5, at which time I just kinda lolled around in the bed until shortly after 6, got up, did my e-mail sorting for my colleagues in patient recruitment, made coffee (having trouble with the coffee maker) and now I’m sitting at my “desk” in the kitchen.

Not only does my typing suck, I’m typing words that I don’t mean to type.  In the previous paragraph, f’rinstance… where I wrote “kinda”?  The word originally came out as “line”.  Does that make any kind of sense to anyone?  Anyone?

I feel like I don’t have a thought in my pretty little head this morning.  If you like ’em pretty and stupid, I’m your boy!


The Well-Placed Chair

Thank goodness for a well-placed chair.

Gail and I just got back from our Sunday grocery romp.  She generally grabs a couple bags from the trunk and watches me as I toddle with my cane up the front steps and through the door.  Then, I keep the dogs at bay as she goes back out to get the rest of the bags.

As she came in, I held the door open for her, and I felt a sharp “ice-pick” of pain in the right side of my noggin.  I stepped backwards to allow her to enter.  (I can hear Dr. Grill right now — “NEVER STEP BACKWARDS!”)

I lost my balance.  But I held on to the doorknob with my left hand…

I kept falling anyway, but now it was more of a controlled descent until my butt landed on a chair we have positioned by the hallway near the front door.  No harm, no foul.

I suppose I should enter it into my “fall journal” just to be fair.

But first, I’m gonna go lay down for awhile.

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