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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