For the last four hours I have been in the miserable state ofsevere "off" that had become almost daily and definitely each evening. It had been getting worse and worse for the last couple of years. "Progression". I thought.

But this was the first time in a week that I had experienced it. It has easily been two years since I had a week like this. I had adopted a behavior last week that I had stuck with until this morning when I violated it and found myself back in the old familiar territory.

This morning I ate three cookies of uncertain origin without testing them first and an hour later I was helpless. Both events were "firsts" for the last seven days. I think I know the cause and will explain momentarily, but first I have a confession.

I have converted to Kinesiology.

There. I said it. I am out of the closet.

For those of you who don't know what I am rambling on about, kinesthetic muscle testing is out in a region I have always described as the "Fringe" or, sometimes, "LaLa Land". It just didn't fit my paradigm.

KMT is based, at least in this case, on the idea that if you hold a sample of food close to your body that your energy field will react to it. If the sample is bad for you, your muscles will weaken and if it is good for you they will not.

Totally outside my usual belief system. Weird. Silly. Off the wall. One problem - it seems to work. At least for me.

So, for the last week I have been limiting myself to only grain products that I could test as a way of avoiding the toxins that come from molds that sometimes contaminate them. Since I am self-conscious enough not to want to test in public, that has meant avoiding grains in public. But this morning my bank had a small spread of cookies laid out and I succumbed.

I will continue to experiment, but there is something to both the toxin idea and the KMT. And I am not ashamed.

Bad offs for me almost always come from food. I've been trying to reduce sinemet since starting azilect, but it's cumulative. I can be on an hour longer, then take the med, but go off after awhile from just eating, no matter when the food is timed. Just eating does it. When this happens, it can take hours to get back on.....hours of dystonia.

So I'm interested in your experiments. Now what am I supposed to do with the food?

paula

Paula-
My own suspicions are of grains, baked goods in particular. But it could extend to meat and dairy due to the fact that this family of toxins can pass from grain to cow to meat/milk as well. There are dozens of these "mycotoxins" and most are not broken down by heat. The defense is keeping them out of the food supply but that fails a part of the time. Also, there is the problem of bread and such that is old. Ironically, if organic with no preservatives, then the risk climbs. Penicillin would be an example of a case where the particular toxin was not harmful to humans. Something like aflatoxins on peanuts would be quite the opposite situation.

Most are neurotoxins and kind of scary. There has not been much research on the effect on humans but there has been much more on livestock. One that caught my eye causes the aptly named "staggers" affecting primarily the rear legs and wearing off as the toxin is eliminated.

Before you venture into KMT, you might just take a day and scrupulously avoid grain of all sorts. If that seems to be an improvement, then you can go deeper.

This could be anything from scattered individual sensitivities to the cause of PD - the research has not been done. My own suspicions at present are that these things are normally blocked by the BBB but that when it fails there are consequences.

I'll try to find a decent site on KMT and post it.

Or, at least, it is just too difficult to find one that is not embarrassing. So, I will tell you how I've been doing it for whatever that's worth.

You will need a loving assistant. Someone who will indulge this latest quirk. Stand facing one another just under an arm's length apart. Now, you extend your non-dominant arm out to the side and slightly swept forward. Your partner places his corresponding hand lightly over your extended elbow and his other hand on your opposite shoulder where the arm hangs down at your side. Calmly take a breath and, with the intent in your mind of conveying a "yes" response, exhale as you give a quick nod. This is the signal for your partner to deliver a single, sharp downward push and release force to the extended arm. This is a sort of calibration so that you know what a "yes" is.

Now, with your other arm, hold your sample against your solar plexus and repeat the procedure with the "yes" intent replaced by an "inquisitive" intent. Your partner should try to reproduce his action as exactly as possible and not use excess force. You are looking for changes not training for the Olympics.

Many things will match your "baseline" with no problem. But, some things will surprise you and the weakness will be unmistakable. Spooky.

A-ha! Where does the food come in?


paula

Can;t say I am sold on this KMT idea, but food certainly has a massive effect on on/off and symptoms.
Like Paula, I have been trying to reduce my sinemet, and for the last couple of months I have had an average of 150mg of L-dopa per day. I take it in 50 mg lots, and if I take the first one before breakfast, it takes effect in less than 30 minutes. If I take it after breakfast, it doesn't switch me on for 2 hours. The strange thing is it still gives me an "on" of about 2 hours.Same length as if taken before breakfast. I always thought it was protein that stopped meds from working, but my breakfast is carbohydrate, (wheat cereal). Another strange thing I experience is every meal, no matter what, gives me dyskinesia.
I take the 2nd 50 mg just before lunch in the same way. I have to suffer an off before I take it, but it lasts longer than the first sinemet. The third 50mg lasts even longer, up to 6 hours max. I find the offs are very bad after the sinemet wears off, but I am managing OK on a very low level of sinemet now. I still take 1mg of Mirapex per day, and have increased curcumin to 4,000mg per day, since it has now been shown to be safe up to 12,000mg.
Ron

Our neuro told us that the sinemet is cumulative, that's why my husband's early doses don't last as long as his ones in the afternoon. He said the sinement builds up in the system and so the latter part of the day is when he has most levodopa in his brain.

Also, if he eats ANYTHING it really disrupts things. Some days, a lot of them, actually, he will go into "snake mode", where he will not eat anything all day (horrible for blood sugar but he'd rather be able to function) and then eat an entire day's worth of food at night. We talked to our neuro who said this was a terrible way to deal with things, he could never imagine doing that since he obviously likes to eat (and a lot, I might add). But what can you do.

On curcumin, does that stuff give anyone a stomach ache? Did it go away after awhile, or do you get the bellyache every time you take it? Thanks.

Well, I had a hard enough time selling myself on it.

It is interesting that we have such a wide range of relationships to food in our little group. I do my very best when I start the day with a boiled egg eaten with my first meds (200 mg Sinemet CR plus 4 mg Requip) followed in a couple of hours by three more eggs scrambled. Nowadays that keeps me going until noon, when I repeat the meds. Other than the current grain avoidance, I pretty much eat as I wish.

Like you say, on a good day that first dose has me "on" in 30 min, but on a slow day it can be a couple of hours but the duration after kick-in is going to be the same. The only explanation I have come up with is the gastric emptying rate being slowed by the need to process breakfast. If my meds are leading the parade boosted by a small volume of food, they won't be impeded by the larger breakfast. It, in turn, will (hopefully) be clear by time for the next meds. That might explain why we get two hours out of it regardless of when it starts since that doesn't happen until the meds leave the stomach.

I wonder about the wheat cereal, though. If there is, indeed, a problem with a sensitivity to these toxins, the randomness could make it hard to spot.
-Rick

Lurking for a cure,
I have never had stomach ache from curcumin. What gave you the idea it gives you "belly ache"? The Indian population eat it in copious quantities, and is probably the reason why their PD incidence figures are 14 and USA/UK is 280 per 100,000 people.
Rick,
Yes, we do have a wide range of relationships to food in our group, but many similarities, we both take half an hour on a good day to kick in. We both need 2 hours on a bad day, the Sinemet lasts the same time no matter when it kicks in. The sinemet builds up in the system and later doses last longer than earlier doses.
My main problem is the dreadful off I get when a sinemet wears off, I am far worse than the off before I took the sinemet.
Ron

I once saw a naturopath who tested for food allergies by making you part of an electric circuit and then putting different foods into the circuit as well. He had a little machine and you held onto the electrodes, if I remember correctly. I already knew a couple things I was bothered by, and he identified those and told me of a couple other things I should avoid - he was right. And he solved my son's chronic cough - avoid sugar and it never happened again. Until the poor kid forgot how awful the cough was and had some sugar.

I've been trying to figure out why I have some really good times and other bad times. I'm sure it has a lot to do with food and blood sugar, but can't pin it down. So I'll try this kinesio stuff and see if that tells me anything. Thanks.