>
Hello Rita, you can add my name to the list of baffled people. I find your
experience fascinating. Could you describe the nature of your Off condition?
Getting out of my car at a shopping mall on a hot sunny day......I will be
able to take perhaps two normal steps and by step five, I am stopped from
movement of more than inches at a time. I cannot lift my feet. I will have
enough breathing (tightness of chest muscles that it is difficult to
talk...not enough breath for projection of sound). Within seconds of being
in the shade/building I am back to my "normal" self. I will find it very
difficult to lift my arms (hanging like lead weights). However, if I
wear blue glasses..............I get out of the car and walk into the
shopping mall in a normal fashion. I can wear the blue glasses for only
about 2 hours and then must remove them for 10 minutes......then go back to
them ok.
Internal "stirrings"...........leave them on too long and I begin to
squirm................I think I begin to overdose on the levadopa in my
system after 2+ hours. (Green tinted sun glasses cause me to have
dyskinesia. Yellow/brown tinted cause me to have difficulty with speech and
swallowing.) Blue tinted sunglasses also eliminate what had been a lifelong
problem with motion sickness in the car.
Is your vision affected when you are off?
Vision is not affected during these "off" periods. However at 3 am while off
(as I am now), I experience double vision.
What drug treatment do you use, and how effective is it ?
Sinemet CR 1/day; 10/100's 6/day; Eldepryl 1; Cabergoline 4 mg. (D-2
agonist, trial drug); .150 levoxyl (hypothyroid med.); .625 premarin
(Estrogen replacement) . I experience 3 stages during the day: Off 30%;
On 30%; and "Not On" 40%........this is an inbetwen limbo of sorts that is
definitely not "off", but not the "kick" that I would like to have.........I
was on 5-6 CR's and went to 10/100's in order to reduce carbidopa about a
year ago.........that is a significant improvement..........I was "not on"
70% and "off" 30% in that drug phase.
Is the 'Off' that you get when you fail to take your tablets the same
as the 'Off' that you get when you are exposed to the red/pink light
? No. It is definitely a different system than the dopamine system that is
at work during these times. How do I know this? Gut
reaction/response.........it just feels different........but both systems
interact.
I hope you don't mind all these questions - If so, just ignore me!
Every question is valid.........some require more thought than others. Good
to review what we are sensing/feeling/experiencing.
I had a group of PD women in for lunch this week and one of the "newbies" to
the group reported that she no longer drives into town past the grain
elevator (large white silos) because the reflection there is so bright that
she "freezes" while driving for a few seconds and it is very disconcerting
to her. She always wears dark glasses and hat when she is outside to avoid
the sun which slows her down.
Have met a couple of folks who have used blue party light bulbs in lamps at
home to "calm" child with ADD with remarkable results.
I would love to know the response of infants going through withdrawal from
cocaine to the blue party light bulbs. Once read an article that described
infant as only being still in darkness and the tremor..........would it work?
Is this blue calming the chemicals for anxiety? Am I overproducing this?
Seem to have some fright/flight symptoms alleviated...........but I am not
emotionally anxious nor afraid.....
Regards, Brian Collins
