Is there anyone who does NOT have off time?
 

Hey, i know that sounds stupid, then you wouldnt' be suffering from PD..right? I just meant have any of you found a consistent timing for taking your meds and you dont get an off? I have had DBS, STILL have to take 1 1/2 sinemet every 2 hrs.. Ive been trying to return to school to finish a BA. So far so good. Yesterday I had my meds at around 6 so I was thinking I'd be good till about 8 or so. I use my watch with a countdown alarm on it. Well, come 715 or so and I'm still not on from the 6 pm dose, I take 1/2 a pill. Come 8pm and still nothing. I ended up taking my usual dose at 8 AND another 1/2 tablet at 8:40, had to have security from the college roll me out to the parking lot in a desk chair (weeee! that was the best part) and arrrived home dyskinetic as hell. The day was low stress, I ate lunch at 1:30 nothing special. Dont know what gives but I do know that I am going to find a way to get my powerchair into my truck for next week! At least I can get around.:confused:

Hi,

I can tell you that I remember a time not so long ago, in a galaxy far, far away when I didn't have off periods. Really, it was just last year when I was newly diagnosed. I even enjoyed an on period of 3-4 hours.

I honestly don't know why our honeymoon with Sinemet is so short; I guess many would say it's just disease progression, but a new doctor who just evaluated me was surprised that I took such a low strength of Sinemet, received excellent symptomatic control, yet had to dose so frequently. I wanted to tell him "welcome to our world"- I honestly think it really becomes a matter of the short half life of the drug and that our systems become used to it pretty quickly and not really a measure of disease stage.

I do notice that once I'm "on" for the day with Sinemet CR (25/100) I get an extra half hour of on time per dose, and I feel much better. No peaks and valleys. Have you talked with your neurologist about CR or Stalevo to lengthen things for you? With CR, I sometimes have to jump start it with 1/2 tab of the regular, but once I'm on it's sometimes smooth sailing for 6 glorious hours. HTH a little.

It's great that you're returning to college, btw!

Laura

I take Stalevo 125 three times a day - 6 am, 12 noon, 6 pm and Requip XL 12 mg once a day in the morning. I generally get about 6 hours from my Stalevo. I think the Requip helps.

During my 28+ year battle with PD I had had times of no off periods, just like other symptoms this damn disease had a mide of its own, you never know what its going to do.

misc thoughts
 

The ALA/ALC is allowing me to stretch the timeinterval between doses. I'm not sure how far yet.

Keep in mind that the drugs themselves generate waste products or metabolites. As a result, the pill you take at 6:00 AM is entering a different body than the one you take at 6:00 PM. Also, the wastes can possibly cause damage of their own so it makes sense to take a good anti-oxidant with your meds.

Peaks and valleys are damaging in themselves or so it seems. Avoiding "offs" is important for more reasons than simple convenience. The fluctuations stress the system. The old trick of dissolving a day's worth of regular sinemet in a bottle of water and sipping throughout the day is one option. Another is to attempt to plot the curves of your various meds and try to overlap them to create as flat a line as possible. Once you are past a couple of meds that becomes very complicated, however.

Dopa Water
 

Rick,

Thank you for making this suggestion. I had never heard of the old water trick. I take Sinemet CR and get maybe an extra half hour (an hour on a really good day) between doses. I definitely consider it a good day if I am fluid with my meds and to do this, as you say, involves staying ahead of my symptoms. I find that I can get a six hour, asymptomatic day (all "on") when I overlap my med doses by 30 minutes. This isn't the most convenient thing in the world given that I'm teaching but it works- I just set an alarm to remind me.

I do like the idea of the water bottle as this is even less intrusive than the alarm. I wonder if it would work to keep my CR flowing throughout the day- this means I might be able to eliminate using extra tabs to kickstart the CR after lunch. Has anyone tried this? I'm just wondering how much Sinemet to dissolve...

As for peaks and valleys being harmful...I fully agree. Research shows this as a problem that largely contributes to dyskinesias- thus, the idea behind a steady infusion via pump as with Duodopa. I think Researchers knew this was more beneficial to us over twenty years ago, and it's only now being used in Europe while in Clinical Trials here (again). Let's hope they work out the problems with the pump this time around. I think there's also a patch in the works but wonder how reliable that will be given experiences with Neupro. -Laura

Levodopa is not toxic to the striatum or substantia nigra either in intact animals or in those in which a model of parkinsonism has been produced. In fact, some in vivo studies have shown that levodopa is not toxic in vivo even in the presence of severe oxidative stress [27] and that levodopa administration may even be associated with anti-oxidant [28] or neurotrophic-like effects.

LeWitt, P.A. New Developments in Levodopa Therapy Neurology.62:1(9-13).

orange juice and sinemet, recipe anyone?
 

Hi Laura,
there used to be a recipe for 'sipping' sinemet on the boards but it was not in water, but orange juice, perhaps Katherine holdens ask the dietician pages might have something about it.
Lindy

OJ would be better both because of the vitamins n minerals plus blocking light degradation. I don't think CR would work well since it is in a polymer matrix. Hard to control.

kUDOS TO YOU REVERETT!
 

Now that's something that I can use, I hafta admit it's been a while. Greatly appreciated , again Kudos!!

avoiding off times
 

hi, i'm new to neurotalk but have been dealing with pd for 15years. reverettt, what is the amio acid mix you take? is that in addition to pharmaceuticals or do you not take sinemet? in the last 6 months i have had off times with increasing frequency and severity. i am struggling to cope. any one have any words of wisdom as to how to deal with 6 hours a day of dysfunction?
in response to the question of liquid sinemet, that's what i've been doing for 5 years. i don't think you can do it with cr. the mix is 10 sinemet to 250 ml of water and a 500 mg chewable vitamin c. for a long time it enable d me to control my fluctuations. not anymore but i still continue to take it this way. perhaps it's just the illusion of control.