I want to thank all of you who responded to me. It is very difficult. I have a new plan that means keep better track of problems and when I take meds which I will bring to my next appointment. 
Gail 

Sent from my iPhone

> On May 9, 2018, at 11:58 AM, Ruellene and Roger Seymour <[log in to unmask]> wrote:
> 
> Hi Gail.
> I can understand your situation, I think we all struggle with dosing our
> meds. Even though I was diagnosed with PD 17 years ago, at age 46, I label
> my situation as "moderate" PD. For better (I think) or worse, my movement
> disorder specialist encourages me to experiment (within reason) with my
> meds. I've tried Sinemet, Sinemet CR, Stalevo and Rytary. I've also been on
> a couple of agonists (Requip, Mirapex) with disastrous results (impulse
> control disorder) and a long and difficult withdrawal. So, I might be able
> to offer some perspective, with the usual disclaimer that I am not a
> medical professional, my comments should not be misconstrued as
> recommendations and any changes you might consider should be approved by
> your doctor. Having said that, I offer the following from my personal
> experience:
> - Know thyself: PD, as you know, is not one-size-fits-all. Each of us
> reacts differently to the disease and to the meds. I have tried (somewhat
> successfully) to identify objective circumstances (eg. tremor in my left
> arm, stiffness in my back) which signal that I am getting low on
> carbidopa/levodopa (C/L) or have more than I need in my system. I've gotten
> to know my dystonias (spasms, etc.) and dyskinesias (head rocking) and,
> importantly, what it feels like to be "on". I have found this knowledge
> indispensable for trying alternate dosings. (BTW, my back stiffness and
> pain are the result of excess C/L, not a lack thereof.)
> - Symptoms have many causes: I find that, day to day and even hour to hour,
> my symptoms change - they get worse when I'm stressed or anxious, or when
> I'm tired, or hungry. Some times the meds have no effect after a meal and I
> have to double up. Some days it seems like I just can't get the dose right
> There are numerous causes. I've found it useful to identify my triggers so
> as to distinguish when my arm is trembling due to stress vs lack of meds
> - Meds are not constant: If you look at a chart of the amount of C/L in
> your blood in relation to the time elapsed since you took the meds, you'll
> see that, in the case of standard C/L 25/100 mg, that the blood
> concentration climbs to a peak in a half hour or so, then declines, with a
> "half life" of an hour to hour and a half. So, if we use your example, the
> chart of C/L concentration would look like saw teeth. I have found that,
> using a dosing level of two pills and an interval of two hours, I can avoid
> the depths of the decline and maximize my "on" time, my time in the
> "therapeutic window". (More of this technical stuff can be found by
> searching for pharmacodynamics and pharmacokinetics of the med in question).
> - Meds can "confuse" symptoms: Many mornings, I am almost asymptomatic for
> 1 to 3 hours after get up (which I attribute to the release of dopamine
> during the sleep cycle and just being, overall, relaxed). Within minutes of
> taking my first C/L pills, I get noticeably worse and it takes 10 to 20
> minutes, sometimes more, for things to stabilize. My theory (unconfirmed)
> on this is that the dopamine flooding the brain is absorbed nonuniformly,
> causing an imbalance. So, say the area controlling movement on the right
> side of the body absorbs dopamine faster (or has more neurons to absorb it)
> than the part that controls the left side, the symptoms may change more and
> faster on the right side. For example, sometimes after taking a round of
> pills, my left leg will spasm while my right leg is just fine. This kind of
> imbalance often forces a compromise between symptoms.
> - Beware the placebo effect: There seems to be a recognition in the
> literature that the placebo effect is quite significant with PD. I've had
> some experience with my expectations clouding the interpretations of my
> meds experiments.
> - Consider keeping a log: I'm really terrible at keeping logs, but have no
> doubt as to their usefulness. Start simple, maybe tracking "on" and "off"
> periods along with med timing. See if there's a correlation or pattern.
> Maybe add a symptom or two to the tracking log. You might observe, for
> example, that a tremor gets worse long before the next scheduled dose,
> suggesting a shortened interval between doses.
> - Remember, you're shooting at a moving target: PD symptoms change with
> time, and a med regimen that works  well today may not be optimal three
> months from now.
> 
> OK, I've rambled on quite enough. Please forgive my verbosity. Again, from
> my perspective, these are things that I've had to consider when
> contemplating adjustments to my meds. I'm still learning. In the meantime,
> I feel that I've gained some more insight as to managing my days.
> Cheers.
> 
> Roger Seymour
> 
>> On Mon, May 7, 2018 at 8:30 PM, Gail Adler <[log in to unmask]> wrote:
>> 
>> I have been silent on this list server for a number of years. I don’t know
>> why but I decided to read the recent posts and find them helpful. I take
>> sinmet 125/100 3times a day 4 1/2 hours apart and one sinmet Cr as a final
>> dose. I don’t tremor much anymore but I have a lot of stiffness and back
>> pain. I’ve been rather fearful of increasing meds so haven’t had much
>> relief from them.  How do you decide with dr to do Med changes? How can you
>> tell if the meds are working .
>> 
>> Gail
>> Sent from my iPhone
>> 
>>> On May 6, 2018, at 6:56 PM, Rayilyn Brown <[log in to unmask]> wrote:
>>> 
>>> https://startsat60.com/health/big-issues/parkinsons-
>> breakthrough-means-sufferers-could-sleep-through-brain-surgery
>>> 
>>> Ray
>>> Rayilyn Brown
>>> Past Director AZNPF
>>> Arizona Chapter National Parkinson Foundation
>>> 
>>> ----------------------------------------------------------------------
>>> To sign-off Parkinsn send a message to: mailto:[log in to unmask]
>> utoronto.ca
>>> In the body of the message put: signoff parkinsn
>> 
>> ----------------------------------------------------------------------
>> To sign-off Parkinsn send a message to: mailto:[log in to unmask]
>> utoronto.ca
>> In the body of the message put: signoff parkinsn
>> 
> 
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to: mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn

----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
In the body of the message put: signoff parkinsn