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.
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.)
“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.
Not that I’m complaining, mind you…
Oh, wait. Yes I am!
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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.
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.