The pdf's I have are big so let me direct you to the site where they came from. Also a lot of good info here.

http://www.mendosa.com/

-Rick

it is amazing how a small fluctuation in blood sugar (more correctly blood glucose) will make to your medication. Well you don't have to be any special form of glucose intolerant...you just have to have PD for this to be significant in your life. The best book on the Glycemic Index is called The New Glucose Revolution By Dr. Jennie Brand-Miller and Dr. Thomas M.S. Wolever. It covers people who are any kind of risk for heart disease, high blood pressure, diabetes, cholesterol problems and more. It has a very comprehensive index, and yes they have tested alll kinds of foods. The Okinawa Program is also a very good book, but more narrow in scope. The trick like Rick said is to keep your blood sugar as even as possible. I keep a journal and log meticulously. I am getting to know the foods I commonly eat, and only check my blood a few times a day now. So it does get easier. The only way they can assign a GI number to a food is by testing it. The book I recommended explains how they do it. It's well worth the investment. Unless you like your meds going on and off!!!

Well the news of the week is I got my A1c test results back and I was just fine .... I scored 5.8 which puts me very close to what I find to be my best response to medication. 5.5. When I'm in the 5's I do just fine, meds work ticky boo. When I'm high I'm slow to kick in and sometimes don't work at all.
When I drop to fast I become dyskinetic. Greg, I'm glad to hear from you and that your finding the same thing. Yes it is a lot to learn, but if you suddenly had a heart attack, stroke, or diabetes you'd have to learn this stuff anyway.
Grazing is the best method of controlling your response to meds, but you will develop other stratagies as you learn more. We have no medical personellle to fall back on because as Rick mentioned earlier, this is news to the medical professionals....even the dieticians. I'm going to write to the two Doctors who wrote the book and plead for them to look at this new insight. This is critical in some cases ...think of all the people who can't ever balance their offs and dyskinesias and have no idea why. My A1c proves you don't have to be diabetic. I have tested as high as 11.9 and at that level I'm a basket case. Yes anxiety, stress can raise your BS readings....This is going to take us a while to document, and share info about before its going to be seen as credible....but its for real. Get a glucometer, test strips and start reading the book. The book explains a lot. More later....excited to see a few more of you poking your fingers. You do get used to it after awhile. I have an Accu-check and the Pentlet is not bad at all. I don't change the needle every time. But I can read my blood sugar and pretty much know what to expect from my meds. Theres more I want to say, but I need to get off the computer and do some clean up...more later. Keep on testing and logging. I'll tell you about some of the things that caught me off guard that will help you avoid the same mistakes. There is a reason for everything that happens with our meds and uneven blood sugar is definitley one of them.

Rosebud,

Checked on Amazon and there are many books by Dr. Jennie Brand-Miller. Which one is the one you suggest please?

Thank You,
Sunflower

The book that has the most information is called "The New Glucose Revolution" and its around $20-$25. I haven't checked Amazon lately. It gives a good overview but it doesn't answer all our questions. It does cover a lot of ground including a chapter on Hypoglycemia which all the other books basicly ignore. Hypoglycemia is when your pancreas is still functioning pretty well, but causes spurts of insulin to take your blood sugar down too quickly. I suspect those of you who are dyskinetic are more inclined to be hypo glycemic. But not to confuse the issue, lets just say that if your having trouble with "On" and "Off" and/or dyskinesia you are glucose challanged...I'm guessing that would be all of us. One of my questions is: does on going therapy with PD medications make the situation worse? AND how much of this is reversable. Obviously there are no answers at this point.

my readings are all over the place. I noticed this morning that when my medication was off I got very very tired...my blood sugar was dropping significantly. I'm wondering if what some of you are calling weakness is the same thing. Tired, fatigue, weakness are all closley related in how we interpret whats going on. My readings are all over the place, but if I take a reading just before I take my meds I can pretty much guess what the outcome will be in terms of how well that dose will work for me. I need to see an endocronologist and have her refer me to a Diabetes trained dietician. My Neurologist apptment isn't until March anyway...good thing I can figure a lot of stuff out on my own!!! Here's a few suggestions to get you started....

1. Keep a diary of Everything you put in your mouth..time/glucose reading (if you have) and medication. You will need this to make your case for step two.
2. Do your nutrition homework: know your fats/carbs/proteins. I'm always amazed that people don't know what food is which. If you can't tell them apart how can you have an intelligent conversation with a Dr. or nutritionist.
3. Take BS readings and try to determine how it affects the different aspects of your PD. If you can't do that, print off this thread and the ones ZF posted and Everett posted that have the studies connecting l-dopa and glucose levels. Make everything as easy for your Dr. to read as possible, they do not have a lot of time. I used a highlighter so my GP could pick out the important stuff. He figured out very quickly that I needed to see an Endocronologist.
4. Be prepared to stick with this for awhile. It's a fact and we are all fighting to make the quality of our life better. This is a crack in the wall...and there is light on the other side.

May the Force be with us! This thread is getting a little long..should we start another where people can post their test results and ask questions. Something with a more general title for everyone?

One of the scarey things that all but completely vanished OVERNIGHT was an extreme weakness in my legs that sometimes required two or three trys to stand from sitting. That alone makes this worthwhile unless you just like chairs with wheels. Also an extreme fatigue has disipated.

This has been big enough that I have renewed my determination to find a cure for this beast. Not only have my symptoms been set back several years, but this shows just how big an element of our disease can be overlooked! Nobody knows about this but us at this point. A handful of staggering white rats knows something important (very) about PD that would negate many instances of brain surgery and nursing home commitment. And none of our doctors know. Yet.

My point is that if there is this big a hole in the current thinking (not to mention the banding thing) what else is there to be found and used to keep our quality of life?

This blood sugar deal should concern everyone of us because it is probably happening without our knowing. Several times every day our blood sugar does a little trick that over time destroys nerves, wrecks kidneys, and god knows what else.

We stumbled across it and now we are using the knowledge of its existence to work on our diets to manage our symptoms. Once we understand it more we can look for things to block it completely and go out for ice cream.

Who knows where it will lead? It may put Steve back on his boat with renewed energy! It may save that poor 21 year old newbie whose name I haven't learned yet (my apologies) from ever having the nightmares we have had! Our horizons have moved back by a magnitude folks.

Yep - we are onto something here. But I have one problem with the bloodsugar thing. I crave - no i MUST have sugar several times a day (or at least I think I do). I nibble on something sweet constantly. I call it my sugar fix, and without it I am so fatigued.

Any suggestions for one with severe sugar addiction???
Peggy

I confess to a sugar jones myself. Before this diet came along I tended to start my day with a handful of almonds. Covered in chocolate. Dark chocolate...

I have been too busy with the charity auction I am organising in aid of PD research, that I had not seen this thread. Thanks to Peggy for pointing it out to me. I am a sugarholic, I eat anything sweet. I am now on only 250 mg of ldopa, yet I get severe dyskinesia.
If dyskinesia is caused by too low blood sugar, will a lump of sugar stop the dyskinesia.
Some time ago on Braintalk 1, I did a poll on which of us were "sweeties", ie were sugarholics. The results as I remember them were fairly evenly split.
Ron

...(as though anything ever is )

At least in my case and seemingly in others as well, the readings never really get into the "too" range on either end. The highest reading I have yet recorded was 130 (US) which any serious diabetic would laugh at. My lowest has been 86 which again doesn't really rate on the hypo- end.

What is evident in my readings is a pattern of change associated with my sinemet and either buffered or made worse by what I eat and when I eat it. If you plot the data I have posted you will get a curve that starts with Sinemet (CR in my case) at 0000 and BS of about 90-95 (US), then climbs gradually until about 0200 where it suddenly accelerates its climb and hits around 130 over the next thirty minutes or so. Then it makes like a skydiver and plummets back to the low 90s over about a fifteen minute period.

During that peak is when my symptoms kick in if I do nothing. If I have added the impetus of sugar or carbs in the run up to this event it is much worse. And if I have dampened it by steadily munching on protein and complex carbs then the symptoms stay away. I have even caught it coming on and totally reversed symptoms for another two hours just by grabbing a healthy snack.

Now, with this going on your sugar at the right moment should cause something dramatic. Dykinesia in your case, freezing in mine. The sugar craving may be simply the fact that sugar elicits dopamine release into the pleasure centers of your brain (not where we need it) and we "want" it. Or it might be an attempt to get dopamine anywhere it can be had. Or it could be our bodies attempting to compensate for this glucose problem in some way that we don't understand.

What we know is that when you eat your blood takes up glucose from your liver. Your pancreas sends out a town crier (insulin) via the blood telling your cells to soak up the glucose which is harmful if left in the blood. This is important enough that your body will turn up the volume by releasing more insulin if ignored (insulin resistance). Your cells each take a little sip but by far the bulk is taken up by our muscles and stored for later.

Unless you take ldopa. According to a 2004 study ldopa, even with carbidopa, blocks that action in your muscles if you are a rat. I suspect that something similar accounts for the spike. But there has to be more to it because the levels themselves are too low to cause them as we understand it.

There is another element that I am trying to follow up that involves the simultaneous release of another hormone called "growth hormone" that may be key to this but I don't know yet.

One final tantilizing bit. When muscles stop soaking up glucose for other reasons, they reset and start again when you "work" them. Think about how you feel when sinemet is first coming on. Streeeetch....Contraaaact. Ever wonder why you do that?
-Rick

Maybe it is my imagination, but does anyone else trying the dietary approach notice anything to indicate that something is happening other than short term symptom relief? I'm beginning to notice myself delaying my meds by ten or fifteen minutes when two weeks ago I would have often been doing the opposite. Also, I wake up stronger.

Probably to early to expect anything, but just thought I'd ask.