My symptoms had been getting worse and worse for the last six to twelve months. Initially in the evenings but more and more into the day. It was getting scarey. Freeezing in public places. Brain fog. Legs so weak at times that I could hardly stand.

That turned around overnight. If I maintain control of my diet I can control my symptoms. There have even been a couple of times now that I have felt symptoms coming on and have turned them back by a quick snack with no meds!

Try it!

I’m finally getting around to posting my results from playing with my Blood Sugar level.
I’ve spent most of this time reading and trying to understand why blood sugar should have anything to do with PD. I’m kind of thick between the ears sometimes. It’s taken awhile for all this information to sink in.
Before I go too far, I should mention I am not diabetic or glucose intolerant or anything. I was having some really strange things happening with my PD On and Off’s. I wasn’t getting answers from my doctors. By strange, I mean not turning On after taking my PD meds. Once I finally get “on” I feel like I am dropping off within a short period of time. I find myself feeling weak in the knees, shaky, cold sweats, and nauseous.
So here is what I have found. Like Rosebud and Everett, I’m finding that even a small fluctuation in blood sugar level can prevent my PD meds from kicking in. A drop in BS brings on dyskinesia. Right now I’m trying to figure out what are the optimum high and low BS readings for me. I think these readings will be different for everyone due to geographical location and diet. For example: Someone living in Japan eats rice and a lot of fish compared to me living in the Midwest USA where meat and potatoes are our staple diet. So far I’ve been shooting way over or falling way under. I’m trying to learn what foods are what, meaning Carbohydrates, Protein, Fat, and so on.
I don’t know if the medical community will ever accept the fact that blood sugar levels are an important part of the medication cycle or not. I do know that since I’ve been aware of this and have made an effort to control my BS my medications are working better and I’m not having that weak in the knees, shaky, cold sweats, and nauseous feeling.

GregD

Have been poking my finger so often these last few day I am sure I am running low on blood!

Problem: Can't find the combination or timing of foods to keep my blood glucose levels consistent. Started this morning with a
9 PM 5.6
After breakfast -10 pm -toast, cheese, apple it jumped to 6.9.
Anxiety attack - 11:00 PM - 9.0
dyskinesia. grippy toes 11:45 - 7.2
meds - 12:30 - 5.3
Lunch - 1:30 - tuna sand with fresh veg. -7.0
2 PM - 8.0
3:15 PM - 6.2 - dyskinesia, grippy toes
4:30 PM - 4.7 - meds
5:30 -pork chop, fresh veg. few crackers - 6.5
6:45 - twisty toes, going off - 6.1

Am a little nervous of snacking on raisins, nuts etc because of sugar & fat content.

Any suggestions would be very much appreciated. My meds are 1 25/100 sinemet 3 x per day.

What does a diabetic diet consist of? Have no problem with meds 'kicking on' but do with going off. I just seem to crash off.

Thank you. Would really appreciate your input.

God Bless,
Sunflower

Greg,

It doesn't matter whether the community ever catches on....just post whatever you discover. These are quality of life isssues that you almost have to have PD to work on. If it looks like something they can profit on, they'll pay attention faster. We are already ahead of practicing neurologists on certain topics. It's not boasting; it's just true - we have more time. We have it and they don't.

I know my ons and offs are related to eating. There are PD cookbooks you know? [ I don't own one - probably should. You get to the point where it just makes sense to figure it out yourself as much as possible. I am still wrappiing and i think it helps. Haven't heard anything from the "wrappers" lately. Another thread tho.

So much more could be said, but there have been some real inroads made getting the researchers who are paying attention, to actually ask the patient. Do you ever think about what a weak measure the UPDRS is for clinical trials? Depends on what kind of day you are having.....lol

Placing tape over mouth.
T hanks for the input from everyone in this thread.
paula

This is fascinating and complicated. I thank everyone who is pricking their fingers because I'm a terrible wimp when it comes to needles!

Can anyone direct me to a simple and easy to understand website on the glycemic index and on the diabetic diet? The ones I've looked at seem to list every brand of every food known to man. I can't figure out why some things have a high number and something else that sounds worse has a lower number. I'll admit that I haven't had much time this week to look into it, but would sure appreciate hearing from someone who has.

I've thought for a long time that I'm probably a bit hypoglycemic, but never really did anything about it before.

i only saw two meds listed. where is no 3?

i've a dandy index if you want to pm me your email. ditto to anyone else.

don't be surprised if you find that you are hyper- rather than hypo- by the way.

the index i'm using factors in portion size. as a result something sweet but of whicn you eat only a spoonful has a lower number than a lesser evil that you eat a pound of.

Rick,

Sorry for oversight. First med at 9:00 AM.

Sunflower

One thing is that your pattern is the same as mine. take a sinemet and two hours later your blood sugar maxes out then quickly drops.and you feel like crap.

You need to forget meals and try to "graze" from when you first get up. avoid extremes of all sorts. mix it up. a little of everything and a lot of nothing. let us know if it works better.

Thanks Rick will give it a try! Makes sense. Thank you for the info on glycemic index. All printed and ready to read!
Will keep you posted.

Sunflower