Dear Group:
There were 15 responses to my "mini-survey". Thank you all for being "good
sports" and participating! I am not a statistician, so
please forgive me for any gross mistakes. I just wanted to get an idea what
the proportion of "off" to "on" time was and how our emotions are affected
by our time-table? I guess, my question can be generalized as: How did I
spend today? Or, how do I fit a life around the "ball & chain" of PD?
Questions were:
1. total #hrs awake
2. total #hrs nap during day
3. total #hrs un-interrupted sleep during night
4. total #hrs "on" on a good day
5. total #hrs "on" on a bad day
6. average length of time for meds. to kick in
7. when in an "off" period, do you persist and attempt to remain "active"
(that sure makes me laugh, if only my mask would permit it)or do you relax
and wait it out?
8. what is the most prevalent emotion you have when having a BAD day?
Results:
1 - total #hrs awake: Avg=17.23 Median=18
2 - total #hrs nap: zero=9; week-enders=2; daily naps=4(1-2.5hrs)
3 - total #unint. sleep: Avg=4.96 Median=5
4 - hrs "ON" good day: Avg=11.06 Median=10
5 - hrs "on" bad day: Avg=7.43 Median=6
6 - time meds kick in: Avg=58 min. Median=60 min
NOTE: time varies from 30 minutes to 2.5hrs
7 - when in "off" persist or rest: Persist=10 ;Rest & wait it out=5
8 - emotions listed first: frustration=8; depression=3; anger=1
moody=1; patient=1; helpless=1
Emotions listed second: anger=4; depression=2; irritable=1;
regretful=1
General observations: 1. we are insomniacs, 2. on good days we spend 65%
of our time "on", 3. on "bad" days we are only "on" 43% of time, 4. we
can spend half our waking time waiting for meds to kick-in, unless we
titrate well (I have not learned that trick yet).
How Individual Responders compare to Median?
Questions #1 #3 #4 #5 #6 #7 #8A #8B
Median VALUES 18 5 10 6 60 - - -
THOS. BARRETT 18.5 4.5 8 4 60 Y FRST ANG
ERNIE PETERS 18.5 5.5 14 10 105 Y F DEP
SHIRLEY ARCH 14.5 8 5 3 30 N D
GUPTA PANDARINATH 20 4 12 8 90 Y HLPLS ANG
JOE SEMANKO 15.5 6.5 14 10 60 Y MOODY IRRIT
MARVIN GILES 19 5 9 6 60 Y A D
BARBARA MARG 18 3 5 2.5 55 N F A
GEO BOUSLIMAN 17 5 16 9.5 45 N D
DAISY DUNGEY 18.5 5.5 6 1 30 Y D D
DAWN KING 15 4.5 10 6 40 Y F
DAVID MOORELAND 16.5 5.5 16.5 12 45 Y F
JAMES RYAN 18 6 16 14 60 N PATIENT
JOHN MIER 15 6 10 6 90 N F
BILL BUTCH 15.5 3.5 15.5 15.5 40 Y F REGRET
I hope that you will look at these numbers and comment on associations or
lack of meaning. Again, I am fully aware that this excercise was just that
-- a little numbers game that helped me to stop, "observe, gather data,
judge and act". Thank you Ronald Vetter for your analysis and kind
suggestions. I will take "action" and redistribute the roles my super-ego
and ego (and id, why not??)play in my daily struggles. Good night, enough
blabbering for now.
Regards,
Margaret Tuchman
