[reverett123]

This subject is carried over from "Are you diabetic, glucose intolerant, syndrome X!!!":

For those who are just joining us, go back and read the previous thread as well. This may be the most important thing in the control of even advanced PD symptoms. As rosebud, myself, and others have reported, the results are nothing short of miraculous. In my own case, I had been on a steady decline for a year or more and was experiencing freezing and difficulty walking. Extreme weakness in my legs made it hard to stand. Bladder control was becoming an issue. So was brain fog. Daily functioning was threatened and I was being forced to cancel important meetings. Understandably, I was worried.

That all disappeared within a twenty-four hour period as a result of changing the way I eat. To say it was miraculous is a fair use of the adjective. It has been four weeks now and I still have not reverted so long as I keep to the dietary plan. As you will see if you go through the thread above, several of us have noted similar experiences. It is not an anomaly restricted to a few Parkies but is something that may affect as many as 80% of us. That means the odds are very high that you can benefit from it.

We've still got a lot to work on, but the heart of it is the realization that, as a result of our meds and possibly PD itself, we are incredibly sensitive to changes in our blood sugar levels. Further, our meds seem to trigger such changes as well. The values themselves stay in the near normal range but within that range sudden spikes and collapses play hell with our symptoms. All this has been discussed in the original thread.

In particular, carbohydrates with a high glycemic load can turn one into a basket case. Conversely, and despite everything we have been told, protein evens things out and prevents my most worrisome symptoms. To really benefit one needs to read up on glycemic load and to get a glucometer and learn about one's own reactions.

If, however, you can't do that, then the next best thing is to get familiar with the high protein diets such as Atkins' and the Paleolithic.

If that is too much, then just don't eat anything white. The absolute worst is a baked russet potato. And start eating as soon as you get up. Boiled eggs are a great choice since they can be waiting in the fridge. Then nibble nuts and such all morning. Never too much of anything, though.

Well, that's what we know thus far. There's more to come, count on it.

[made it up]

Hi Reverett,
Personally I found animal protein disastrous to P.D. symptoms. When I say protein not so much plant protein eg rice milk, soy bean in any form like tofu or milk.
It was the animal protein like eggs that'd have me in a longer off state than a non animal protein alternative so I'd choose salad or fruit instead of eggs, meat etc.
I don't have hypoglycaemia, type 1 or 2 diabetes so can't comment on the blood glucose levels but from a purely Parkinson viewpoint pre DBS when I relied heavily on levodopa to obtain an "on" I remember clearly the disastrous consequences of just a simple egg in the morning.
I love meat, eggs and dairy products it's just that they interfered with an "on" so much I was down to very little animal protein.
Cheers,
Lee (now made it up formerly madeoverseas)

[reverett123]

There is an awful lot to learn about this and I freely admit to shooting in the dark at this stage. But the effect on me has been so dramatic that I am going to keep scratching until something makes sense.

A couple of questions, Lee: First, what is your blood type? Second, when you were having such trouble with animal protein, were you taking an agonist as well? Finally, was your timing such that you ate right away upon arising or was there a period before breakfast. And where did your meds fall into the timeline?

I don't mean to be nosey but I am sucking in data anywhere I can find it. I know from the old BT that an awful lot of PWP are Blood type "O" and have a special relationship to meat. That may be a key to metabolic differences.

I am taking Requip with the Sinemet and it may be that the former is filling in for the latter. Finally, eating right away seems important in my case, I wondered about yours.

One thing that I want to emphasize because I, myself, keep forgetting it is that we are not really talking about true hyper- or hypo-glycemia because the values don't swing outside the normal range. There is a strange pattern of a sudden spike and collapse that seems to follow sinemet by two hours and it is that sudden change that seems to be the troublemaker, especially if there are a lot of carbohydrates around.

If we can work out the patterns and control this tool, and if it applies to all of us, the result will make the introduction of Sinemet pale by comparison. Not bad for a bunch of Rats

[reverett123]

....but did you know that if you change your signature that it does it across the board even with old posts?

[Fiona]

It always seems unpredictable as to how what I eat affects me. One day I have a little protein during the day, and I'm so off I can barely hobble over to the sofa to lie down. Next day I eat a big steak dinner, and walk briskly over a mile home. Go figure. This darn thing just fluctuates so much, and the variables seem myriad.

[rosebud]

Your protien MUST be lean as possible. An egg is fat in the middle (the yolk), most cuts of animal meat have high to mid fat content. It is the fat that stops your meds from entering your blood stream. We eat our toast with butter or whatever...that slows the high GI effect of the bread. Also most of us don't need as much food as we think we do. Sugar is the problem (glucose,actually) and we talked about that a lot in the old thread. Last night I went to a huge dinner with way toooooo many rich deserts. I've been paying all day. I am one of the ones whose blood glucose readings are out of the range of normal. I will probably have a great deal of difficulty controlling my fluctuations with just a modified diet. Those of you who can should because once you catch on to how it affects the kick in time for your meds your life will change. Read all you can about the Glycemic index. reread and reread because you miss stuff one read only. Also get familiar with how, diabetics eat, heart patients and people on weight watchers who have a really good program. I'm totally converted to this line of thinking. Protien is not the problem, it is part of the solution. But you really have to understand what your eating to spot the fat. Cheese is deadly and so are some high fat nuts (cashews...sorry folks). I'm still waiting to find out when I see the endocronologist. Oh yes. the potatoe thing.... some people can eat them and some can't, some people can get away with ice cream and some can't (low fat or no fat of course). So there are some quirky things as with everything else about these bodies we dwell in.

[made it up]

Hi Reverett,
My blood type is O pos.
As far as animal protein goes I had trouble with levodopa absorption after eating it both when I was on an agonist and when I wasn't.
I didn't eat straight away in the mornings but waited till I was "on" enough after taking medication to be able to get out of bed.
I was taking levodopa every 2 hrs and understand the relevance of taking it with a time lapse before eating.
Cheers,
Lee

[reverett123]

Even the experts disagree. This is Dr Lieberman on the low protein approach-


There are problems with the diet. First, protein is an essential part of the diet and in a chronic disorder like PD, more not
less protein is needed. Second, designing a low protein diet that is palatable and sound isn't easy. Third, not all
patients have the same degree of protein sensitivity, estimates of sensitivity vary from 20% to 60%, making it difficult
to know how much protein should be restricted. Fourth, while the diet is often helpful in patients who take up to 5 doses
of levodopa per day, it's not as helpful in patients who take levodopa every 2 to 4 hours, the patients who most
need help. The reason for the above are not known. In part it may relate to the severity of their underlying PD, in part it
may relate to there always being a small amount of levodopa in the gut or at the blood brain barrier, and just enough
valine, leucine, and isoleucine to compete with it.


At this point our best route seems to be to try the different approaches and keep notes.

[reverett123]

...but darned if I know what it is. This morning I started out with a boiled egg, 2 Requip, 1 Sinemet CR, and 1 Selegeline. That was about 6:30.

I was "On" by 7:30.

Next food was a handful of walnuts and prunes about 8:30.

At 9:30 I had 2 Requip, 1 Sinemet CR.

About 10:30 I had a pack of beef jerky.

At noon I had 2 Requip, 1 Sinemet CR.

At 1:30 I had a salad and a hamburger.

It is now 2:40 and I am doing well and have all day.

What's going on? I'm taking a lot of Requip (4 mg tablets) I know, but I don't think that it is compensating for blocked Sinemet CR (25/100 tabs).

One possibility is that I am taking in just the right amount of protein with the single egg to give me a good, "buffered" start. But that doesn't ring true.

I just don't know but it is great.

Again, this change happened overnight. Before I had been getting up, waiting a couple of hours for the meds to kick in, then eating some non-protein. Sometimes it worked, sometimes not. Then by noon I was running into trouble and often cut my workday short. Testing with a glucometer showed normal values. Nothing unusual other than the "spike effect". Switching to the protein first thing was an attempt to do away with the sudden change.

One thing I remember was a study done in Brazil using riboflavin two or three years ago that got good results. I remember that they took away red meat as part of it. But what really stood out was just how much red meat some of the folks had been eating - several pounds per day!

Now that can be looked at as carnivores bringing on a chronic disease with naughty eating habits. But it could also be looked at as sick people desperately and unconsciously seeking protein or some other nutrient.

One other variable that I don't think pertains but I should mention. I take turmeric and have for a long time. About the time of this change I became concerned that the tablets had not been breaking down properly so I switched to the plain powder ( a teaspoon mixed with a little yogurt twice a day ). That might explain my results but not that of rosebud and others. Nor why my protein and sinemet get along.

The floor is open to suggestions...

[Howardh]

an interesting concept worth a look. On the curcumin thread


http://neurotalk.psychcentral.com/sh...2003#post22003

I posted my daily medication, nutritional, and diet routine. It works for me touch wood (puts hand on head ) I cut as much sugar from my diet as possible, appreciating the fact there are sugars in the fruit and other bits and pieces I eat. I have gone mostly organic as well. I have included in my mid morning, a snack of nuts and berries. Caffiene is another no no.

Sometimes I'm off the boil on diet particularly at this time of year with xmas coming up and the inevitable eating debauchery associated with that. I have found if you break the diciplined dietry cycle in any way and you're a ten year Parkinson's veteran as I am, be prepared to pay the consequences which are not pleasant

GO HARD SCIENCE