Well here we go again. I was doing good this morning, kept the meds on schedule. I was even able to do a little housework. Then I laid down for a nap at about 1 or so and got up at 4. I was off so I took a usual dose of sinemet 1 1/2 tabs. At 5:30 time for another dose-but I wasn't getting any relief from the previous dose. At about 6 pm I took another 1/2 tab. We went out for dinner and I was on, even a little dyskinetic, came home around 9:30 and was off. Now it is 5 in the morning and I've been up for 2 hours now. I'm bouncing around here so badly that I cannot even hold my head straight. The meds don't have an effect then they come on like they have piled up. This is really aggravating, depressing, frustrating all at once. And the thing is I know that there are other treatments that are better at stabilizing the doseage-duodopa, yet it's not out yet. And at what point is it made available to someone who has had DBS but it was not very effective. Neuro appt August 1. We gotta talk.

Jim,
Can you let us know what brand sinemet you take, and size, to see if there is any correlation to things that others have reported about sinemet not working so well.

It is a real problem when they don't, this can be part of the paradoxical 'off' in later PD that no-one has a real explanation for. I suggest that you get to your neuro on this, but also hope that others will take a look here and see whether there is any better advice for you on supporting medication that will help you stay on, so you can go to your neuro armed with some suggestions of you own...

Best l uck with this

Lindy

Like you say, that pile up - dam burst thing can be a real pain. My most common cause seems to be gastroparesis - the infamous "slow stomach".

Some things that have helped me-
1- Take pills on an empty stomach to give them a head start.
2- Swedish Bitters or similar bitter herbs have been shown to stimulate motility. The bitterness on the tongue is what does it.
3- Talk to your self. Or, more precisely, your Self. I'm not kidding. In a quiet setting and out loud, initiate a conversation with that vast part of you. You don't have to limit it to GI function either. I am having success with stuff like, "Walk smoothly down the hall and make the turn into the bedroom." But it has to be out loud. And not as a command but more like a partner.

On the latter, I suggest that you let the folks around you know that it is coming lest they get the net.

Reverett, you're right on the mark. I've been suspcious of this fact for a while now. I've had various GI problems for some months and it seems that the works get all backed up and I don't absorb my meds. I was really reaching out from frustration at dealing with this on top of all the other crap, (AHHHA) that goes along with this disease. I've got to work it out and figure what the regimen is now to keep myself going. (Ooops!)

Thanks everyone. By the way I am on 25/100 generic sinemet 1 1/2 every 2 hrs. I know there is a huge difference in the brand name but I cannot afford the higher co-pay.

"The generic is the same, there's no difference." Yeah, right. As I told my wife "Just a back rub..."

Hi Jim,

Since it doesn't like the FDA is going to make Duodopa readily available to us anytime soon, have you considered being a guinea pig for them. I can't think of much risk in a delivery form that has been used for over a decade in 38 other countries, can you

I have been interested in it myself, but at first thought I would most likely fly for treatment to a nearby state, but it looks like one within driving distance is now recruiting!! Anyway, not sure where you are in Florida but they have a couple study sites in your state! Best thing is this Phase III Open Label No placebo!!! Looks like a one year commitment.

http://clinicaltrials.gov/ct2/show/s...ow_locs=Y#locn

Oh, and I owe an apology to you and any others who read my post on Duodopa being approved this summer. Somehow, I mangled my mother's version of the story. She really said "a device" and I, in a dopa deprived state, must have "heard" pump or other keyword. Really, it was wishful thinking and power of suggestion taking over; I won't leap before I think next time. I have asked Mods to remove thread...I don't want to add any misinformation.

Hope I have redeemed myself a bit with info on phase III

Best,

Laura