Here’s a great resource for people like us – a real report on the impact of Parkinson’s Disease from somebody with first hand experience. There’s no shortage of content repeating press releases but very little genuine insight from people who know what they’re talking about.
Scale Measures Parkinson’s Disease
Published: July 21, 2010
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.
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.