Yo say your sinemet isn't workin??? consider this...

[rosebud]

I'll try to keep this brief (not my strong point).

I went complaining to the Dr. that when my blood sugar was over 6 (that's 108 in U.S.) my sinemet won't kick in. Yes I use a glucometer when I get suspicious. I suspected the sinemet was the problem and caused adrenaline to be released into my system =a very ferocious tremor in my legs.

I was tested (loaded to the gils with sinemet and benzodiazapines) and had a fasting glucose test done...Yes I tested positive for diabetes. How they think they have a realistic picture is beyond me when your body is under the influence of chemistry altering drugs to the degree mine was to get to the lab.

Dr. puts me on medforman...nightmare city!!! No to that idea, I;ll die before we do that again. (The simple answer in Dr.'s head is lower my blood sugar levels...sounds logical). So with my limited knowledge of nutrition, my glucometer, a copy of a carbohydrate calorie etc handbook, I set out to resolve my own problems.

I have found that food is just as big a "drug" as all those pharmaceuticals we indulge in. I'm pinning it down to what causes my meltdowns, and my inability to walk. The sinemet may not be the cause of my problems, but the food I eat definitey affects my blood glucose levels, and when sinemet gets trapped somewhere between the mouth and the brain...yes chaos and havoc ensue. Soooo my point is, sinemet may work just fine for you. But the garden in which you are planting it may cause it to behave very badly.

Hormones play a role also....thyroid is my best guess at the next card on the table. My metabolism is very erratic. I am not going to increase my drugs. I know sinemet has not stopped working for me. But the enviornment I'm putting it into has changed. Marching in formation has nothing to do with going in the right direction. I've brought my blood glucose levels down to acceptable levels, much to my G.P.'s surprize.
I've done that by making simple dietary changes. Now for some fine tuning.

I have a Endocronology appt in June. I'll have it mostly figured out by then.
"Just say no to Drugs". Doesn't apply just to teens - it applys to every human being on the planet. Well within reason. Some do help.

[bluedahlia]

Yes the thyroid definitely plays a major role. I just had a total thyroidectomy 2 weeks ago and haven't yet started my replacement therapy. Offs are really off and ons are a dyskinetic mess. HELP!!!!!!!!!!!!!!

[reverett123]

I ran into some blood pressure problems and suspended my use of coconut oil, but my wife continues to take it daily. It supposedly corrects the way the body uses thyroid hormones and I have to admit, it sure seems to have made a big difference in her, especially her sensitivity to cold. It has also raised her body temperature from 96.5 to 97.8! And, much to her delight, she has lost most of the gray from her hair and has stopped finding lost hairs in the shower drain.

[paula_w]

Homeostasis, which everyone everywhere seems to be attempting to achieve, as mentioned in another thread, may just be theoretically possible with the possible exception of Jack LaLane and his wife....:)

it's takes a lot of effort...and someone to do the cooking. but i do wonder how good i could feel - it's so much to do with energy levels. I should switch to a cr later in the day...may help to regulate the high levels of sinemet that transform me into a soft spoken, slurry, mumbling individual in the evening, who feels comfortable talking to myself, the one who can hear and understand me best.

What would I do without the news to make me appreciate my privileges? There are millions and millions who have it worse. Be like a servant....humble.....stop whining.[she says to herself] Things are out of balance all around..

paula

[reverett123]

I see the ideal way for a PWP is similar to life in a monastery. Simple, undemanding, non-arousing (as Joop said). No worries about money or anything. And the earlier in the progression the better. It would save the system money.

The appeal of that approach is telling. That is not a prescription that a person wrestling with motor problems would find attractive, but it is one that a person who had been drug through the modern day stress machine would.

To get back on topic, this is from the link to Bruce McEwen's article at http://www.naturalhealthweb.com/articles/McEwen.html

"Chronic Stress Response - Too Much of a Good Thing!

The way our bodies work presents us with a paradox: what can protect can also damage. This is called "allostatic load." It's the price the body has to pay for either doing its job less efficiently or simply being overwhelmed by too many challenges.1

For our metabolism, the overactivity of the ANS <autonomic nervous system> and increased cortisol secretion produce elevated levels of sugar in the blood ("hyperglycemia"). As little as a week of inadequate sleep, say 75% of normal, can raise evening levels of blood sugar. If prolonged, what can result is a rise of insulin, the hormone manufactured by the pancreas to control sugar metabolism. If this situation goes on for a long time, continued hyperactivity of the ANS and elevated cortisol will lead the body down the path to type 2 diabetes. Elevated levels of cortisol, as in depressive illness, are also linked to gradual demineralization of bone.

......

While acute stress actually improves our brain's attention and increases our capacity to store important and life-protecting information, for example, a source of danger, chronic stress dampens our ability to keep track of information and places. Chronic stress does this by impairing excitability of nerve cells and by promoting atrophy of nerve cells in the hippocampus, a region of the brain that is important for spatial and verbal memory."




Homeostasis, which everyone everywhere seems to be attempting to achieve, as mentioned in another thread, may just be theoretically possible with the possible exception of Jack LaLane and his wife....:)

it's takes a lot of effort...and someone to do the cooking. but i do wonder how good i could feel - it's so much to do with energy levels. I should switch to a cr later in the day...may help to regulate the high levels of sinemet that transform me into a soft spoken, slurry, mumbling individual in the evening, who feels comfortable talking to myself, the one who can hear and understand me best.

What would I do without the news to make me appreciate my privileges? There are millions and millions who have it worse. Be like a servant....humble.....stop whining.[she says to herself] Things are out of balance all around..

paula

[rosebud]

Rick et al:

Yes we should all live in a yellow submarine, and there we would find peace and enjoy watching the fish swim by....
But unfortunatley you would need to take "other" drugs than the mainstream ones doled out for PD.

Back to the great chase we are on for answers before the grim reaper is standing by our bedside (we can only put him off for just so long), the more I read the more confused I get. it's like trying to find your way around London without a compass and a great deal of luck. I followed one train of thought that connected glucose to alcohol which is fuel that cannot be stored..which led me to a link about alcoholism and dopamine deficiency, which takes us to the question of why we are so easily mistaken for a drunk when we are dyskinetic.

I clearly am suffering from sleep deprivation as this is a rather random and rambling post. Just wanted to tell you, I think the answer is so nebulous when we want to understand our own bodies, that first we need a true picture of the universe and I don't know anyone with a camera that powerful.

[rosebud]

Feeling better so can now post like I really do live on the same planet as the rest of you. I stayed up reading last nite until I hit the wall. Pushing to get the most out of my on time, is almost always a mistake. I frequently make mistakes. But the last couple of weeks have been very eye opening for me. I have started to eat properly, or as close to it as I can get. Much to my surprise, my condition is improving. I have found that a balanced meal with appropriate amounts of food actually makes my meds run smoother, and more predictably. My blood sugars have come down to acceptable levels and I'm feeling better about life in general. For 11 years, I have believed that I had to modify my protein to keep my meds on, and was very lacidasical about portions. I am learning that portion control and balance of protien/carbs and fats can and does make a huge difference. I still havn't seen the dietician, but protien doesn't seem to bother me. Logic has failed me, -who'd have guessed.
back at the beginning of this road trip I earned a lifetime membership at weight watchers by losing my excess baggage & maintaining my goal for 6 weeks. Now I'm going to take advantage of their services and get myself back on track. I can go weigh in once a month, keep current on nutrition trends and all for free as long as I stay within 5 lbs of my goal weight. This is good for my body, and good for my PD.
I also went out today and bought myself several sets (3) of measuring cups.
Portion control is a big thing. I want to leave measuring cups all over the kitchen, so I don't have to go search constantly. I'm going to support myself in this effort to the best of my ability, because the alternative is darn ugly.

[reverett123]

You go girl!! :D

Feeling better so can now post like I really do live on the same planet as the rest of you. I stayed up reading last nite until I hit the wall. Pushing to get the most out of my on time, is almost always a mistake. I frequently make mistakes. But the last couple of weeks have been very eye opening for me. I have started to eat properly, or as close to it as I can get. Much to my surprise, my condition is improving. I have found that a balanced meal with appropriate amounts of food actually makes my meds run smoother, and more predictably. My blood sugars have come down to acceptable levels and I'm feeling better about life in general. For 11 years, I have believed that I had to modify my protein to keep my meds on, and was very lacidasical about portions. I am learning that portion control and balance of protien/carbs and fats can and does make a huge difference. I still havn't seen the dietician, but protien doesn't seem to bother me. Logic has failed me, -who'd have guessed.
back at the beginning of this road trip I earned a lifetime membership at weight watchers by losing my excess baggage & maintaining my goal for 6 weeks. Now I'm going to take advantage of their services and get myself back on track. I can go weigh in once a month, keep current on nutrition trends and all for free as long as I stay within 5 lbs of my goal weight. This is good for my body, and good for my PD.
I also went out today and bought myself several sets (3) of measuring cups.
Portion control is a big thing. I want to leave measuring cups all over the kitchen, so I don't have to go search constantly. I'm going to support myself in this effort to the best of my ability, because the alternative is darn ugly.

[sunflower4u]

Just a quick question Joy. Are you following a low gi meal plan to keep your sugars in check? I have a sugar problem as well and have been into the books on GI for sugar control.
Thanks,
Sunflower

Feeling better so can now post like I really do live on the same planet as the rest of you. I stayed up reading last nite until I hit the wall. Pushing to get the most out of my on time, is almost always a mistake. I frequently make mistakes. But the last couple of weeks have been very eye opening for me. I have started to eat properly, or as close to it as I can get. Much to my surprise, my condition is improving. I have found that a balanced meal with appropriate amounts of food actually makes my meds run smoother, and more predictably. My blood sugars have come down to acceptable levels and I'm feeling better about life in general. For 11 years, I have believed that I had to modify my protein to keep my meds on, and was very lacidasical about portions. I am learning that portion control and balance of protien/carbs and fats can and does make a huge difference. I still havn't seen the dietician, but protien doesn't seem to bother me. Logic has failed me, -who'd have guessed.
back at the beginning of this road trip I earned a lifetime membership at weight watchers by losing my excess baggage & maintaining my goal for 6 weeks. Now I'm going to take advantage of their services and get myself back on track. I can go weigh in once a month, keep current on nutrition trends and all for free as long as I stay within 5 lbs of my goal weight. This is good for my body, and good for my PD.
I also went out today and bought myself several sets (3) of measuring cups.
Portion control is a big thing. I want to leave measuring cups all over the kitchen, so I don't have to go search constantly. I'm going to support myself in this effort to the best of my ability, because the alternative is darn ugly.

[rosebud]

It's good in theory, but has a few problems in practice. The gycemic index tells you what foods "generally" give you a slow burn rate, so you don't throw too much fuel on the fire all at once. It it not strictly true that we all respond the same way to a given food. There is also the "glycemic load" to consider, and that's another ball of wax. I use my books on Glycemic index as support reference. My goal is to maintain my blood sugar at a stable level and to do that I have to log What I eat , when I eat etc. Sometimes I find that something in the Glycemic index does not apply to me. (read up on how they arrive at their indexing levels)

The disturbing truth is: NOTHING IS FOR SURE.

You have to figure it out by trial and error. I have seen a lot of improvement in my situation over the last 3 weeks. Diabetes is almost as big a mystery as PD. They juggle their insulin, we have sinemet insanity to deal with. Sinemet impacts how we metabolize food (or vice -versa?) but nobody seems to know how or why. I think cortisol has a huge impact on our PD, but I don't know enough about it to say anything. That will be my next avenue of pursuit. I'm feeling pretty confident that dyskinesia is the side effect of too much glucose in the brain. But there could be 1000 scenerios that cause that to happen.

[Ibken]

It's good in theory, but has a few problems in practice. The gycemic index tells you what foods "generally" give you a slow burn rate, so you don't throw too much fuel on the fire all at once. It it not strictly true that we all respond the same way to a given food. There is also the "glycemic load" to consider, and that's another ball of wax. I use my books on Glycemic index as support reference. My goal is to maintain my blood sugar at a stable level and to do that I have to log What I eat , when I eat etc. Sometimes I find that something in the Glycemic index does not apply to me. (read up on how they arrive at their indexing levels)

The disturbing truth is: NOTHING IS FOR SURE.

You have to figure it out by trial and error. I have seen a lot of improvement in my situation over the last 3 weeks. Diabetes is almost as big a mystery as PD. They juggle their insulin, we have sinemet insanity to deal with. Sinemet impacts how we metabolize food (or vice -versa?) but nobody seems to know how or why. I think cortisol has a huge impact on our PD, but I don't know enough about it to say anything. That will be my next avenue of pursuit. I'm feeling pretty confident that dyskinesia is the side effect of too much glucose in the brain. But there could be 1000 scenerios that cause that to happen.

better than mine...would you please post a couple of those balanced meals that seemed to work for you. Kinda feel like i'm cheating here asking you and I know we're not identical but I think it might be helpful to try/compare. (I like everythingbut baked beans, oysters and tongue!) Some of those recipes/ menus that you will ofcourse include in your forthcoming book! Thanks so much! Ibby

PS Yesterday I made a poorly -thought-through attempt at Joop dosing and really screwed up . I was overhelmed by the change in routine and the uncertainty of it all. It's scary how in a rut I am. :eek: Don't worry I'll go slowly w/ any suggestions you have ! Learned my lesson yesterday.

[Jaye]

I used to have a T-shirt that had written on the front:

EAT RIGHT. EXERCISE.
Die anyway.


Since then, I have lost the both the T-shirt and my scorn for healthy ways. Eating well and using appropriate supplements is kind of a no-brainer for people who want to feel better for any reason or cause, isn't it? I fall far short of the ideal, but I applaud anyone who's working on caring well for herself.

Good thread, Rosebud.

[rosebud]

What I'll do is , I will post what I am doing and you guys can adapt, or whatever....just watch me and see what may develop. My plan is to eat healthy, bring my body weight in line with my height, and track everything. I'm going to use Weight Watchers as my core eating planner, and follow their suggestions for exercise. I may die anyway...but I plan to look darn good in my coffin!

First. You need to know how to balance your food....it's a sharp learning curve and W.W. makes it easy because they do all the mapping for you. I completed their program 11 years ago, and it works, but ya gotta do it.
The thing I have to remember is to divide up my foods into the 60% carbs, 20-30% protien (don't get psyched out by the protien factor...I know it makes things work better, not worse. You will be amazed at how little that really is compared to what you think you need) and the rest in fats...good fats. On the WW program I have 18 points to spend on my food. in the real world thats probably about 1400-1600 calories, or 250 gr of carbohydrate. I'm guessing....so don't quote me or take my guess too be the actual case.

So to recap 1. I am counting my Weight Watchers points (called tracking)
2. I am working to distribute my food choices to meet my 60/30/10 ratios of carb/protien/fat that I must do to keep my blood sugars balanced. 3rd -I'm on a 2 hour med schedule for which I keep a timer and log. Now the juggling begins!, oh ya, I gotta fit a little exercise in there and drink my fluids too. Maybe I should start a blog...I'll make a note of that. Maybe somebody can help me set one up...next week. This week I'm swamped.:eek:

Tune in tomorrow for the next installment.
P.S.
Yesterday I spent $30. on measuring devices spoons, cups,(several sets) for portion control. Today I bought a good digital scale for weighing what can't be measured out in spoons or stuffed into a measuring cup. This is a life time committment. So in the big picture its just good investment.

The first thing I had to figure out was how much food do I need to get to optimum weight? (assuming I get some exercise every day). I was allowed 18 points although my caculation showed only 17 points.....which means I'm not eating enough. So unlike most WW clients, I am undernourished. No surprise there.

[Ibken]

What I'll do is , I will post what I am doing and you guys can adapt, or whatever....just watch me and see what may develop. My plan is to eat healthy, bring my body weight in line with my height, and track everything. I'm going to use Weight Watchers as my core eating planner, and follow their suggestions for exercise. I may die anyway...but I plan to look darn good in my coffin!

First. You need to know how to balance your food....it's a sharp learning curve and W.W. makes it easy because they do all the mapping for you. I completed their program 11 years ago, and it works, but ya gotta do it.
The thing I have to remember is to divide up my foods into the 60% carbs, 20-30% protien (don't get psyched out by the protien factor...I know it makes things work better, not worse. You will be amazed at how little that really is compared to what you think you need) and the rest in fats...good fats. On the WW program I have 18 points to spend on my food. in the real world thats probably about 1400-1600 calories, or 250 gr of carbohydrate. I'm guessing....so don't quote me or take my guess too be the actual case.

So to recap 1. I am counting my Weight Watchers points (called tracking)
2. I am working to distribute my food choices to meet my 60/30/10 ratios of carb/protien/fat that I must do to keep my blood sugars balanced. 3rd -I'm on a 2 hour med schedule for which I keep a timer and log. Now the juggling begins!, oh ya, I gotta fit a little exercise in there and drink my fluids too. Maybe I should start a blog...I'll make a note of that. Maybe somebody can help me set one up...next week. This week I'm swamped.:eek:

Tune in tomorrow for the next installment.
P.S.
Yesterday I spent $30. on measuring devices spoons, cups,(several sets) for portion control. Today I bought a good digital scale for weighing what can't be measured out in spoons or stuffed into a measuring cup. This is a life time committment. So in the big picture its just good investment.

The first thing I had to figure out was how much food do I need to get to optimum weight? (assuming I get some exercise every day). I was allowed 18 points although my caculation showed only 17 points.....which means I'm not eating enough. So unlike most WW clients, I am undernourished. No surprise there.

i'm realizing how little control i have been exercising over my food choices...difficult kitchen situation....other than request stufff from the grocery where my son works. I have to keep it prettty simple. Then there's ffood that showss up - like pizza, choc cake, soup - I almost always eat alone at odd times. I'd rather be sharing space and a good cook w/ a few other pwp - where we could walk around snacking together...LOL.

for now Rosie, i apppreciate your good sense, work and efforts in sharing your gutteral gastronomic tips for maxing (how IS Max?) PD meds et al.

60/30/10....hmmm...egg salad sandwich? w/ celery and carrot? now WHEN can I eat it? boy! couple this thread with the one on decision making and you've got problems! (aka stress!) :D

[rosebud]

ibby: what is "joop" dosing?

I took my Glucose reading when I awoke....a little on the high side,but not terrible. I then ate 4 triscuit which fare pretty well in the prefab food catagory. That brought my blood sugars down a bit, but still waited 45 minutes for meds to kick in. The transition was fairly smooth.

I've now had breakfast (1 piece of french toast, 1 cup of mixed fruit, 1 glass of water. I have noticed that my sense of smell is coming back from time to time..hmmmm. I tookmy new scale toy out of the box and played with it for awhile, then had a look at my Reference book. Being the obsessive person I am I am working on a simple way to carry all the essentials around in one little pkg. I may have to go buy a small purse like an evening clutch or something similar. I want to have one easy travel, all inclusive pkg. for recording, testing, tracking etc. My Glucometer etc included. Ate breakfast out of a measuring cup this morning. It's going to take me a week or so to catch onto all this foreign behavior..Its tough to teach an old broad new tricks. :rolleyes:

[Ibken]

Joop from Holland's "no arousal diet" - considering med timing and type's of food eaten...basically what we're talking about here - i think!

[rosebud]

It's so hard to say what our bodies are doing, with or without the benfit of drugs. I didn't follow the whole thread because it was longer than my attention span can handle in one go. Personally, I have very little trouble with dyskinesia. So either my brain is not recieving the dopamine, or??? who knows.

I know when I eat properly I do better. My first day trying to tow the line of eating a wholesome balanced diet was tricky. I had my blood sugar drop to very acceptable levels, but my body rebelled a little. I was surprised at how little my body needs in terms of volume but rather in terms of quality. I think someone said something about how hard it is to eat right when we live alone.
Its also easy to justify large portions in the name of conveneience. Instead of saving half for later, we eat the whole thing. Often leading to imbalance in what the big picture looks like.

Try to think in terms of a fruit, or veggie base and then add to that your protien and if you haven't already got some fat included in the two previous catagories, you can add a little. An apple with a few bits of low fat cheese can be very filling and enjoyable. It also will be a substantial snack, or part of a bigger meal by adding a second carb. Then that should last you for a couple of hours....depending on your size of course. Ibby you need the fat. Are you dyskinetic? Most people I know with PD who are underweight are dyskinetic. It's like being on a constant exercise machine. Burns too many calories.

[reverett123]

I'm not sure how to handle it and will, in fact, be watching with interest as you work it out. It may or may not be right to avoid protein and that may vary with the individual as well.

I do think you are right about portion size and have a suggestion. Would it help if you bought "school lunch" sized items? Then you really could eat the whole bag of chips if you wanted.


It's so hard to say what our bodies are doing, with or without the benfit of drugs. I didn't follow the whole thread because it was longer than my attention span can handle in one go. Personally, I have very little trouble with dyskinesia. So either my brain is not recieving the dopamine, or??? who knows.

I know when I eat properly I do better. My first day trying to tow the line of eating a wholesome balanced diet was tricky. I had my blood sugar drop to very acceptable levels, but my body rebelled a little. I was surprised at how little my body needs in terms of volume but rather in terms of quality. I think someone said something about how hard it is to eat right when we live alone.
Its also easy to justify large portions in the name of conveneience. Instead of saving half for later, we eat the whole thing. Often leading to imbalance in what the big picture looks like.

Try to think in terms of a fruit, or veggie base and then add to that your protien and if you haven't already got some fat included in the two previous catagories, you can add a little. An apple with a few bits of low fat cheese can be very filling and enjoyable. It also will be a substantial snack, or part of a bigger meal by adding a second carb. Then that should last you for a couple of hours....depending on your size of course. Ibby you need the fat. Are you dyskinetic? Most people I know with PD who are underweight are dyskinetic. It's like being on a constant exercise machine. Burns too many calories.

[rosebud]

Chips are not on the menu....Brown rice is.:D

Your brain needs a little boost to get going in the morning. I just had a bit of trail mix. It seemed tomake the transition easier. Not much ..maybe 1/4 of a cup. It worked pretty good this morning. Then I ate regular breakfast after that.

Cruising on overtime tonight. Time to shut things down... more later

[lurkingforacure]

This may help. A 4oz. portion of protein is roughly the size of a deck of cards. Also, when I was trying to learn how much to pack for our kids' lunch box, I read somewhere that our stomachs are about the size of our fist.

I think what this means is that we should (all) be eating much smaller, but more frequent, meals. People are not snakes, but the way we eat in America sure makes is seem that way, like every meal is our last. More frequent meals should definitely help avoid huge spikes in blood sugar levels, I would think.

[reverett123]

There is what is called "post-prandial hypotension" meaning low blood pressure after a meal. One study claimed it likely is the leading cause of falls in nursing home residents, so it is no small matter. And a lot of us already risk a similar effect just from standing up.

Seems like we have two choices - either nibble like herbivores all day or stuff ourselves like carnivores once every other day. Oddly enough, both seem to offer similar advantages. It is the continuous infusion of high calorie foods that kills us.


This may help. A 4oz. portion of protein is roughly the size of a deck of cards. Also, when I was trying to learn how much to pack for our kids' lunch box, I read somewhere that our stomachs are about the size of our fist.

I think what this means is that we should (all) be eating much smaller, but more frequent, meals. People are not snakes, but the way we eat in America sure makes is seem that way, like every meal is our last. More frequent meals should definitely help avoid huge spikes in blood sugar levels, I would think.

[Ibken]

dys something. maybe dystonikinetic. my r ankle twists beyond comfort, gets sore and swollen and i have to get off my feet...and be still. it is the limiting factor in my drugs, ...i am spooked about piggybacking consecutive doses...esp with the food factor. because it hurts too much when ii get it wrong - whicih isi usually. am loosing about 10 lbs per anum while stuffing 3x day. aim to try more/different drugs but need a good neuro annd the wait here is 3+months! meanwhilee i can try to piicture my fooott in step w/ paula's marchingg lleg!:D

what's for lunch? ibby

[rosebud]

when you look too closely at something we cannot see the forest for the trees. With PD, we live 24/7 and there is no place to run. In spite of all I know about my disorder, I often have my best days when I say: I really don't give a darn about any of it today and go buy myself an ice cream cone.

[rosebud]

Well I had a good day today. except for getting a slow start in the morning, I seem to be doing better. I still have a cold, but I'm eating my veggies and my blod sugars have been a little high, but stable. When your next dose of meds don't kick in after you've had dinner or whatever (a piece of chocolate cake), it could be that your blood sugar is still highfrom the meal, and thats whats preventing the sinemet from reaching your brain.

Or not. I guess it's anyones guess but my money is on the blood glucose thing.