[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."

Originally Posted by 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

[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!!

Originally Posted by 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.

[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

Originally Posted by 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.

[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.