As the space ship landed, he looked out the window and all he could see was a granite wall, a cliff, with little red critters scurrying around; they looked like salamanders. Then he noticed they were all lining themselves up in some sort of pattern; the window was so close to the wall, he had to crane his neck to see the full pattern they were making; he was startled to see the salamanders were forming letters of the alphabet: he slowly read out loud what they were saying:

"This... is... a.. test."

And I once thought that my lessons were done.

This new condition that I have - I am fighting back at it with all available weapons - and it is a bit better now that it was 3 weeks ago, and that was better than 3 months ago. I think it's another beast to chase away with everything that ancient beasts don't like. It ain't over until it's over.
In Quebec French we say "il n'est pas fort; mais il n'est pas mort."
(He is not strong, but he is not dead.)

Well Bob, et.al. -
I tried taking only Mirapex this morning and no change in basic response - no on time, no ability to walk, a lot of shaking and one long freeze. I'm rather discouraged.

"il n'est pas fort; mais il n'est pas mort."
I like this. I am not giving up, but it does throw into question all the speculation about bad Sinemet concoctions, etc. Back to the drawing board? Laura has a lot of good ideas, it seems to me. I don't think these problems can be fixed by taking more chemicals? Maybe fewer? Maybe get a few sources of stress resolved? this is my 3rd day totally in wheelchair and it is hard to negotiate my house - and life.

What next?

[QUOTE=Sasha;
What next?[/QUOTE]
Yeah, I don't know. I have been fighting this crisis for 3 to 5 months and I am getting fed up. As Groucho Marx used to say to perfectly innocent people who had no idea who he was, "You realize, of course, this means war."
I am hoping to crank myself up out of the depression torpor and use all available weapons. Announce to people that I need to charge at this thing and I will probably need help. And hack away at it. Sleep? Warm milk and honey. A more comfortable pillow. Naps throughout the day. Diet? Rigorously no junk food. Pills as scheduled as possible, but no promise I can keep much of a schedule. Avoid stress excessively, totally. Music for sure. Dance? When possible. Call in the spiritual U.S. Marines.
There are emotions and creativity that sometimes seem to get dopa production going again. Sometimes getting angry works (careful!) Any PWP org nearby worth sharing with? Second opinion neuro? All I mean is, go at it full blast with all you can muster, and it may slink back to its cave. I am lucky in that I get some time with a Continuum teacher (sound, breathing, meditation-like; paying open attention to what is going on inside us & etc.) Physical action, with therapist if possible; sometimes individual sessions, but consider going to a course or a group, and not necessarily a PD group. It can help to "share" as they call it, and sometimes having someone there to go through exercises and talk together... can make a big difference.
Laura's ideas are great; balanced and profound.
As you say too, Sasha , I am totally perplexed that I can;t tell if my system is crying out for more drugs, or if i am overdosing and should take less. It feels like overdose every time.. but then I take more and it gets better, or not.

I am totally perplexed that I can;t tell if my system is crying out for more drugs, or if i am overdosing and should take less. It feels like overdose every time.. but then I take more and it gets better, or not.

This captures my experience exactly

Otherwise, too tired to respond tonight!

Thanks,

Sasha

Hi Sasha,
Thought I'd add my 2 cents worth for you to wake up to!
Good advice you've been given from others in this group btw.
Perhaps try and be fussier about being on time for your meds and get a pill cutter for more accurate dosages and take the same amount of levodopa in a day as you do for now only at a reduced dosage, try perhaps hourly.
I think you said you're on 100mg levodopa 2 hrly so try 50 mg hrly and experiment a little.
25 mg an hr may even be all you need for less fluctuations.
Go and buy a new bottle of levodopa too as like Ron said it may be the cause.
Make sure you check the batch number is different to what you have now.
The symptoms you mention sound like you're plain old off to me so maybe give it a go and as I often say we need to be captains of our own ship so experiment a bit with the above and good luck!

Sasha and others;
I think made it up is onto something in the suggestion to spread out your l-dopa in smaller doses over time throughout the day. A practical approach that I have seen described involved dissolving sinemet tablets in a measured volume of water and sipping the resulting solution a little at a time. This might make it easier to take smaller increments of the med than trying to cut the tablets into quarter- or smaller doses.
I think the logic behind approaching the fluctuations with smaller doses spread out over time has to do with how much capacity we have left for taking up and storing dopa in our substantia nigra and striatum. As more and more neurons are lost, there is less and less "buffering capacity" in the system. What was previously handled by the remaining neurons by uptake and release becomes excessive and overwhelms the receptors.

A couple of other things - Are you taking ldopa overnight or not ?

Wonder if you are experiencing paradoxical off and on, where even on medication you can suddenly go off.........

I agree with Made it up on meds, you have to find your tightrope to be able to use it - and it does sound like off's to me, though I am puzzled by it happening right after taking meds......... that is why I asked about nights.

Wearing on can be as nasty as wearing off, I remember seeing something about MJF not liking the way meds kicked in. It is often v uncomfortable for me..... getting worse before better...... sinemet sensitivity is also a possibility...

It is a problem when we don't know and our doctors don't know either, but nevertheless there is this issue that we are living with....... hope you both find solutions soon.

Wow! Thanks, everyone for all of the suggestions. It will take me a while to work my way through all of these.

I'm been pretty mobile most of the day (with about a 2 hour off after some afternoon medication).

Here's what I've done since last night: I took a mg of klonopin as I was very stressed. Yes, I know that can be problematic, but I'm already addicted to Sinement, so what's one more? :-) Seriously - I reasoned that if the muscles locked down experience I was having was due to stress, Klonopin would help. And it did. So stress is a factor. I did some stretches. I dug out my neglected supplements and took one of each. I listened to a meditation tape. Got some sleep.

Today a friend gave me a ride to our Tai Chi class (me in a wheelchair) and then to physical therapy where my PT spent an hour fussing about how spasmed my muscles are. I made an apppointment to see the PT who specializes in neuro, esp. Parkinson's, next week.

I have a small notebook and I've been keeping a record of when and what I take in the way of meds, as I do tend to forget or take an extra, etc. No I don't generally take at night. I think I definitely need to get a pill splitter and a pill box with alarm - or else, I hear there is a function on my phone (Droid) that will bo that. Of course, I would have to learn how to use the phone first.

made it up, how do I find out the batch number on a bottle of medication? Unfortunately, neither my insurance or my pharmcy will let me buy more meds until the computer gives permission, but that's not too far away.

... as a med becomes toxic (as in you are taking too much) paradoxically you will get symptoms very much like the ones you are treating and then some. Since being off work, I have lowered my Sinemet intake 2-3 pills a day and feel much better and less stress over-reaction.: - Conductor 71
I really agree that this is a good idea. My dr. did raise my meds rather quickly recently - because I think I was already experiencing some offs. Now I have offs coming and going plus dyskinesia . This is nuts. Backing down on the dose some is definitely worth trying. As are all the other suggestions you all have given me from Stalevo to dissolving meds in water, etc. Ron, where do you get Mucuna Pruriens? I can probably do a search for it? And, Bob, I can see we have similar outlooks: Throw the book at the monster. I'm just trying to change only one thing at a time (plus dusting off all the older interventions) to see if I can narrow it down.

I seem to remember that all of this started when various docs added 4 new meds to my line-up at the same time...I ended up quitting 3 of them as I was having all kinds of crazy symptoms. Managing the PD and the medication collection is a full time job.

I'm thinking maybe I have a "wearing on" situation since it gets worse when I take a new dose, and tends to dissapate after an hour or so,- where did that term "wearing on" come from? Anyone remember? I want to run it by my neuro and need to sound a little credible. Footnotes help, I've learned.

HOpe everyone else is doing well and holding the beast at bay as much as possible.

Hi Sasha,
Try iHerb,

http://www.iherb.com/Herbal-Powers-M...aps/37301?at=0

Ron

well i broke my leg playing pickle ball, tho the doctor suspects the fracture was already there. he went in and put pins and stuff to keep the hip from coming out of socket. then i descended into hell. i had an extremely severe reaction [possibly from Delaudid] and will tell this story later in more length.

relating to what you are posting about....i suspect there is just about anything in our drugs. I had to keep my leg stationary and seperate from the other thru the night. i don't have to tell anyone on this forum the challenge that presents if you are awake. thinking was that the delaudin and a ten lb wght attaching my foot to it should do it. result: one wave of restless leg syndrome after another; it was the worst night of my life, blew my mind and I am not back yet. but i knew it wasn't pain killer i needed - it was sinemet. this was an off behavior.

accompanying condition: psychosis; it's a very dark place ,not reality and no place to make decisions from. i'm in rehab and am hoping for survival. i wish i could say that with humour, but i''m feeling and seein all kinds of things regarding pd and changes from being given generics. right now pd just looks like one big long stroke.

pray for me please