Diet and the "E" word
 

Those of you who read my posts know I preach journaling and diarizing. Well here's where it could pay out big time for you should you choose to use it.

I know exactly what I can and can't eat to control my dyskinesia. I get it right about 90% of the time. I know what I can and can't eat to keep my meds up and I can do that about 90% of the time. The remaining 10% is subject to the unexpected or my dark side taking over the show, or just being plain old stupid.

All my calculations are going to go out the window when I throw the "E" word into my mix because it will change my metabolism rate and affect my blood glucose levels. This scares the H! out of me,but I've got to go there if I want to benefit from an exercise program. I'm starting this thread because if you are having trouble with "on"/ "off" and dyskinesia you need to take a good look at your glucose levels and start diarizing. When your body has to go to it's reserves for glucose your into a danger zone and your PD is going to respond... the phrase "hit the wall" will take on new meaning. This is not a disease for the faint hearted. We may not be able to cure PD but I come closer every day to the belief that we can grab it by the throat.

For those of you who do exercise, do you have problems with increased symptoms (even if it's only for a brief part of the whole picture and well worth the price)meaning: tremor, rigidity or dyskinesia? Especially ones that come on suddenly?

Here's a quote for the naysayers "would those of you who say it can't be done please get out of the way of those of us who are doing it!"

May the Force be with you (us)...J

Rosebud,

You bring up a good point about the exercise and changing of glucose in the body. I used to be able to skip meals conveniently because I was too busy or didn't have enough mony to buy a lunch. I can't do that anymore because I end up with very prominent tremors in both my right hand and my right leg.

I am also a journal keeper. Ever since I was burned by the first neuro I had, I've been keeping a journal of what happens and how the medication has helped or not, and other symptoms have appeared or when they go away. My neuro then incorporates my print-out into her notes.

John

Dyskinesia,
 

Hi Rosebud,
Although I read everything I can on PD publications, I have not paid enough attention to glucose levels, or how they affect dyskinesia.
I suffer badly from dyskinesia, and wondered if you could summarise your findings on what to avoid and what to take. Thanks a lot.
Ron

Hi Ron..
 

I don't have time to give you all the details but I did not want to leave you hanging all Easter weekend. The Jist of it is, if I cut out the sugary, white and hi glycemic foods my dyskinesia will disappear in a day or two. You are in the UK where meat and potatoes are big stuff and cakes and bisquits go with a cup of tea. You may have a tough time weeding out the culprit, but basicly if you live on a diabetic diet and balance your glucose you should see some improvement in your dyskinesia. WARNING: No joke, even 1 candy can push you right back into dyskinesia. Your system is sooooo sensitized to the quick and dirty calories that burn like a house on fire. Caffeine and soda pop drinks also contribute. Try an elimination diet...water to drink, whole grains and veggies to eat. then add in s-l-o-w-l-y the rest of what your diet includes, leaving the more suspect culprits out for awhile. Can you get decaffinated tea? Is there nothing left that you love to eat that you can still have.... probably not. You know the drill...journal and log/diarize everything you put in your mouth., Another really important thing for me is the frequency I take my meds. I'm on a two hour schedule. A real nuisance, but not as bad as the dyskinesia I get if I try to go on a four hour schedule. The movement disorder clinic want me on a 4 hour schedule, but my body will become dyskinetic EVERY time I try it. My Neuro has given in because He can see I know my body better than they do. Very humbling for the poor medical professionals. :( Pm me with your personal e-mail address and I'll get on it next week and I'll send more detail. Good luck and I hope you find that it will help. We are all different and so no guarantees. Oh yes...If I'm not getting enough to eat I become dyskinetic too! this is a tricky game. I carry food and water everywhere I go. My guess is you need about 2000 calories a day to maintain your weight? For now follow the rule: If in doubt, leave it out! It's always easier to correct for under meds/calories than for over the top. Experiment and log! cheers ...J

Dyskinesia
 

Hi Rosebud,
Thanks a lot for your info. I had no idea that high glucose levels had such an effect on dyskinesia, despite the amount of reading I do on PD.
I am also on a 2 hour schedule, taking 50 mg levodopa every 2 hours for 12 hours from 8-00am to 8.00pm.
However, as regards glucose, I take 2 spoons of sugar in a cup of tea, put a spoonful over my cornflakes, snack all day long on cakes and chocolate biscuits, and eat several Mars bars and chocolate bars in the evening, washed down with a pint of beer! My weight? 126 pounds, the same as it has been since I was in my teens. In fact I have developed into eating so much sweet things in order to try and gain weight, but it is impossible.
Best wishes
Ron

Wow!!!
 

You are probably severly malnourished. All that sugar is empty calories and its like trying to keep a fire going by tossing on paper. You need protien to feed your muscles and misc other important functions, and you need carbohydrates with some substance to feed your brain. Have you ever been tested for diabetes?? Even the beer is turned instantly to glucose because your body has no way to store alcohol. If you go off all that sugar you will feel like death for awhile and probably get one heck of a headache. It's probably not making you fat because it is burning as it's your only signigicant source of fuel (It will burn first because it is easiest to convert to fuel). the other thing about sugar is it is addictive...quite legitimatley so as it messes with your "pleasure Centres" in your brain. This might sound like a strange statement, but alcoholics are often underweight because they burn alcohol to run on and there is nothing to sustain the workers in their bodies (kidneys, liver, brain....you name it) You are in the same catagory if you eat a lot of sugar and don't gain weight. You are literally starving yourself to death.

126 lbs??? I am 121 lbs at 5'1" and I wear a size 6 ( size 2 if your American) I am a small woman.. you must be skin and bone? Well start by cutting back on the sugar in your tea and the chocolate bars. If you get hungry for something sweet eat an apple ....I know that doesn't sound very appealing, but the amazing thing you will discover is that you will feel a satisfaction that you will not expect from an apple. Apples are real food! I am a sugar addict and I know this will not be easy for you. But if you will give it a chance you will probably feel very much improved in a matter of weeks.... White potatoes and white bread also convert almost instantly to glucose. I'm guessing you eat that as well. what kind of cereal do you eat? You should be eating whole grain cooked cereal. (not overcooked -but we'll talk about that later. ) If you need the sweet taste there are a few natural sweeteners that are actually good for you. Stevia is one and there's another as well, but I can't remember the name off the top of my head. I don't know your personality so I have no idea how you will approach all this, but Us sugar junkies know its no easy chore to get off the sugar. If you are a black and white kinda personality you may try going cold turkey. It's not the sugar per se, its the glucose it converts to and the speed at which it converts. It is literally like feeding a fire with newspaper in terms of fuel for your body. Once you get on a quality diet and your craving for sugar goes away you will gain weight, especially if your dyskinesia slows down. Thats where your burning up the empty calories. Your dyskinesia is probably living off your sugar habit like a parasite. I'll pm you my e-mail addy so you can contact me direct. When your meds are off do you have a tremor?

Another point in favor of the "Rosebud Diet"
 

:) The small meals approach helps with another little known PD problem - the drop in blood pressure following a big meal as blodd is diverted to your GI system. Medline lists several papers that say it is the leading cause of falls in nursing homes.

And one thing about sugar - most sweets these days are far more corn syrup than sugar. Corn syrup is thought to trigger inflammation which we definitely don't need.

good ol' Table Sugar
 

is not the worst of the glucose gang...as I recall it's a disaccharide meaning it is made up of two molecules,and as you add more molecules you get a longer chain and a less sweet taste. There is some issue in the states just now over the use of corn based sugar (it is a polysacchride and can be added to everything without making it taste sweet), and it's highly addictive and causes you to feel hungrier than you are. I'm too lazy to look it up, but the bottom line is ya gotta learn to read nutrition/ingrediant labels.

We all have good days and we all have bad days. The only constant variables physiologicaly are what we put in our mouths and our activity levels. Think about it. Feel free to correct me if I didn't get it right....there are many here more knowledgeable than I.

Ron, man after my own heart, only with me it's ice cream. When I add too much regular food, I gain weight. So I eat two regular and one or two bowls of ice cream. It's the best i can do...that it, it is what it is.

I need the sweet too
 

Hello : me too :) I feel my 'system' needs sweet things .. I try to have it from dryed fruits anad dates ..
Is sweet bad for PD ?????