With only an occasional exception, (kids birthdays) I eliminated added sugar from my diet entirely in November 2020. I also greatly reduced my fruit intake.
I felt Much much better.
I just relapsed and had sugary treats. I intended on “just one.” It didn’t even taste that good but it triggered an insatiable desire to have more and more. I believe this is because it reignited my chemical addiction to sugar. It’s petrifying how quickly the insatiable desire to eat sugar resumes after an initial indulgence.
I am going to resume my complete abstinence from desserts. My commitment to this is not only renewed but stronger than before after this experience.
I’m sharing this bc I know others struggle with sugar too.
Abstinence is possible and for me the only way. There is no “balance.”
I have returned to having a teaspoon of raw honey in my large glass of tea (with Mannitol and Cinnamon) and having a teaspoon of Royal Jelly twice a day.
Why royal jelly? If you don’t want to get in to it, no worries
Takes me back to the 70's and a book called Sugar Blues. We raised our children without processed sugar. When our daughter was tiny, an elderly relative called her "Sugar" and she started to cry.
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That is adorable and admirable!
I should have mentioned that I can relate to your experience.
I was advised to eliminate sugar back in '76, including sugar found in commercial products such as peanut butter. The first few days were pure hell, even down to having a sensation of insects crawling across my skin. After a week or two I seemed perfectly fine. At about the 2 week mark, my mother made apple strudel and hid it somewhere before leaving for work. At first I thought, "I'm just curious to look at it." and started idly looking about the kitchen in the most obvious places. A couple of hours later it became, "Where is it?!" as I returned to intensify my search. By the end of the day I was frantic to find it and tore apart the kitchen. I never did find it. But that experience proved to me how addicted and out of control I was.
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I have similar stories but much worse and too embarrassing to share online! ☺️
I thankfully naturally have low blood sugar but I can completely understand how even diabetics struggle to reduce sugar. For me, reducing doesn’t work. It’s a chemical addiction. Total abstinence is the only way to stop my cravings.
There were no candies, cakes, and cookies when I was growing up. Our desert was seasonal fruits. My mom was baking only during the Holidays and Easter. As an adult, I continued with fruits after lunch and supper. They actually help your digestion.
If you still want that "sugar" you may try halva made with sesame seeds oil and stevia. I also buy sesame seed bars sweetened with Stevia. So you "treat" yourself with something sweet and good.
Addiction to sugar is a strange animal. A few years ago will power was enough. It is no longer... I clear my house of all sugar containing items so that it takes going out to get something to get sugar. I have actually done that in the past. No longer. Knowing my genetic tendency to diabetes, it's FULL STOP. I don't need another chronic disease to manage!
I agree! And acknowledging ones sugar addiction needs to loose the stigma of it being just a lack of self control. This is so serious for PWP. It needs to become as socially unacceptable to expect people with sugar addiction to “just celebrate with cake like everyone else” as it is to expect an alcoholic to toast with wine. We have so much at stake.
I still have ice cream and Valentines Candy etc in our house and I don’t touch it but I’d love to be rid of all of it!
That’s an oversimplification. Research shows that sugar is literally more addictive than cocaine. It has been studied and documented. Brain scans show this. There is a lot of stigma about sugar addiction that causes people to ignore the science and “try and find a balance.” The social pressure to still have some sugar is very hard if you are physically not just psychologically addicted to it. Which is why I posted this.
Abstaining from sugar is hard but possible and needs to be normalized. For some of us, it is what is needed, complete sugar abstinence.
I don’t get to have halva or oranges. I just can’t. Just like we shouldn’t tell alcoholics that “it’s only wine.” Sugar addiction is a serious problem.
I don’t crave it unless I have been ingesting it and then I want more. It’s more comfortable and healthier to just avoid it completely Thank you for the magnesium tip!
Interesting about the gluten. How strict are you about that? 100% or mostly? I already switched to basically being vegan, so more restrictions in my diet is not what I’m looking for, but if it’s a good health strategy, I’m interested.
I should add, in the last year, my sleep has gotten worse, and I’ve always been a really good sleeper. So I’d like to address that if possible. I take extended release sinemet at night for cramping, which works, but it doesn’t seem to help with getting a better nights sleep.
Take magnesium and zinc in the evening before bed. And, melatonin. Work your way up to 10 mg. Do not eat within 4 hours before bedtime. When I was a vegetarian (almost vegan) I was often up until 3 am and dealt with muscle cramping and restless leg syndrome.
I was a devout vegetarian and almost vegan for 13 years. It turned out to be the exact opposite of what my body needed. Eat meat. Truly. I had a religious like devotion to being a vegetarian. It was an emotional transition for me. But, it enabled me to feel better and sleep better and think much better. I recommend starting with salmon for omega 3 minimum of 3 servings a week. And eggs for choline. Your body needs it. Carbs just convert to sugar which is detrimental to our brains. Gluten causes inflammation. 100% gluten free.
I track my glucose since I'm diabetes prone. Sweets spike my glucose...including most fruits, sweet potatoes (touted as a "healthy" carb for diabetics), most carbs in general. For the first few years after diagnosis (2015) I eliminated sugar, then I went to Italy and couldn't resist the gelato (dairy AND sugar). Took me until this year to get back on the wagon...
I have stopped all artificial sugars more than a year ago and I’m not looking back. I found what could be an interesting alternative to chocolate during a holiday in Portugal last week, it is called Carob. en.m.wikipedia.org/wiki/Carob
Just as some people can drink in moderation and others are prone to alcoholism, it’s not just a mind over matter situation. Sugar is more addictive than cocaine. It’s largely biological not just psychological.
I was not aware that is a biological addiction. I use organic coconut sugar or Manuka honey with my espresso or Greek coffee. And I do use organic half and half in my coffee. That is the only time of the day I use sugar or honey.
Husband uses Mannitol in his tea. Have you thought about using it to sweeten your coffee?
A couple of years ago, I did a program that was designed to reduce inflammation in the gut (and help with PD symptoms). The six categories of inflammation-increasing foods are sugar, dairy, gluten, soy, meat and corn. The idea was to eliminate (as much as possible) three of the six, so I took the first three. I never noticed a change in my symptoms, but i did lose 15 pounds. I’ve mostly kept it off even thought I’m not as diligent as I used to be.
My sister is an anti-sugar advocate. She has done a lot of research on sugar intake and the physical and physiological effects it has on the body. It is really intense. Definitely something to be limited/avoided in all its forms (honey, agave, etc).
Sugar is something I crave, but, when I purposely cut out most sugar, in my diet, after a few days, I, invariably feel much better, overall, so that is a good thing!
Couldn't agree more. Sugar is inflammatory, and PD is an inflammatory disease. What's worse is that for some reason PWP seem to crave sugar more than average.
What's sad is that fruit counts as sugar too, as far as your blood is concerned. (A new article just came out, in fact, which I can find if anyone wants)
I've cut it all out--have not really had a bit of it since 2016, except an occasional blackberry, raspberry, or starfruit--they're pretty low. Also, I don't worry about using sugar substitutes. There's lots of conjecture, but no one has ever actually shown they are bad for you. So--at least for now--it seems to be ok to sweeten your coffee w/whatever substitute you like, or make a "fake sweet" creme brulee, or whatnot. :o)
Hi! I’ve been meaning to ask you a few questions. I’m on an (almost) keto diet but I’m ready to really get back on it again. I remember you have dairy. Im undecided about dairy. So many people say it’s inflammatory but then I read that’s not true.
No seed oils, no gluten, no grains, no sugar, IF, all supported and obvious at this point.
But dairy?
Aged cheese and goat cheese have real health benefits
Eliminate it. Let it go. I LOVE cheese and always have, but if I eat some it’s similar to the “sugar robot”. So that’s a sign it’s not good for me. You don’t need dairy.
Google Parkinson’s dairy. Some don’t agree with how Laurie does her research, but there’s a lot of information out there, enough to convince me to stop dairy.
I LOVE cheese too! I love it more than dessert. But it’s a unhealthy love! When I read Dr. Laurie Mischley’s study is when I stopped cheese. But I resumed it when reading elsewhere of the benefits of aged cheese and goat cheese. That’s all the excuse I needed.
I’ve had s hard time figuring out what to do in coffee. I think I will have to hold on to a little cream to get the coffee down.
I wish I could eliminate coffee but that Rutgers study keeps me on it.
Actually, I put very little stock in associative studies, and the dairy studies were just that, as far as I know...and even then the only strong association w/PD was with SKIM products. Anyway, yes I eat dairy, all cheeses, high fat yogurt, cream, and butter etc.
Besides, even folks who react badly to dairy are reacting to either the lactose or the casein, and the higher the fat, the lower the levels of either of those...to the point of negligible in full cream or butter. And I agree that aged/cultured foods are good. So...
Gluten I think is inflammatory for some people (we had friends whose kid had celiac's, and OH BOY did he get sick w/gluten, long before it was fashionable. He got sick breastfeeding when his mom ate gluten.) So, yeah, it's a thing, but it happens not to be a thing for me, and sometimes I use purified gluten in my baking because it's a protein, not a carb, and really helps with fake low carb bread. But YRMV.
Seed oils, I'm with ya. I use olive and avocado (and butter and ghee). But I don't sweat an occasional meal out, like soy oil mayo in lobster-shack-lobster-salad or chicken wings at our local place, and I know they are frying in horrible stuff. But they sure are tasty. And low carb. And we go like once every few months.
I just think, of ALL of it, sugar is the worst. Maybe because it IS addictive? Seed oil just isn't.
Hmmm, maybe. But imo you are so far ahead eating keto that I wouldn't panic over nuts. Also, if you put dairy (cheese!) back in your life you've got another snack. I am a huge coffee + cream drinker--that keeps me full and happy.
You could consider a supplement. I believe (am not certain...look it up?) that for omega 3's it is RATIOS that count. Or maybe just absolute amt of DHA/EPA? Either way, taking a supplement would manage it.
I couldn't have written it any better. Millions of studies, millions of results and philosophical analyses!
Everything in moderation as the body and brain need everything! Another good diet is a restricted caloric one. This is an ideal diet for PwP, including myself who is not a PwP. No fruits, but oranges and apples are high in Vitamin C, yet, we pop a vitamin instead of the real food which the body needs and uses it more efficiently and effectively.
The poor American diet has caused chaos in people's bodies. Fast food, highly processed and packaged food are the bad guys. To prepare good food at home takes time which is so restricted in our daily lives, we don't have time to prepare healthy food at home! Got to go!!!
I am sure many of you know that "Tyrosine" a supplement that is consumed by forum members comes from the Greek word "TYRI" which means cheese. Instead of popping a supplement, eat a small piece of organic, grass-fed cheese. Good for the brain. I can go on and on, but I am stopping here.
Until recently, I didn't know what gluten is. I and my parents were eating it all of our lives, but we never experienced any harm coming from it. Guess it's a fashionable cause of health problems, recently discovered which everyone now avoids or tries to as the evil of all health problems.
Eat real foods and an extra vitamin/supplement will compliment it.
IMHO, food doesn't cause PD, but good food can ameliorate symptoms. Everyone should eat healthy and sensibly.
We've added some grow shelves* for growing indoor greens during the winter (and veg starts). Purslane is an excellent source of Omega 3's, and delicious!
gluten issues is not a fad. The food we eat has changed due to factory production and factory farming. The type bread we grew up on is not what is causing most of this. The ingredients have changed. America is of course the worst for this. And in America bread is made with a shorter rise time to make production faster which further changes it. Post WW2 the food industry completely changed how it’s grown and produced not just consumed. That applies as much to gluten containing carbs as it does meats and veges.
It’s not just glutinous consumers with no self control although that is obviously a huge problem. The food itself is different giving rise to allergies that historically were rare.
I have severe gluten intolerance and I am a very fit size 2.
Well, in current sizing I'm a size 2 but the way they size clothes now is ridiculous. I have vintage clothes that are a 4-6 that fit like a modern day 2! I'm small boned so despite being a size 2 I'm a little overweight (in my opinion). It's all about OPTIMUM HEALTH and not vanity! I've heard about the calorie restriction being healthy as you mentioned. I wish I could find specifics on that. I highly recommend intermittent fasting. I literally enjoy it now. Eating 3 meals is too much for me unless it's Greek food!
Dr. Mischley is wonderful. I truly mean that. I am so grateful to her. I turn to her as a starting point in research. Doctors as invested and caring as her are rare gems. But any doctor that recommends bananas for breakfast as she has in a video I watched, to people with neurological issues is not up to date. Spiking our sugar in the morning is so extremely bad for everyone but especially people with neurological issues. Whether it comes from a honey bee, fruit tree, or jelly bean factory, our brains do not distinguish this. Sugar is detrimental to our brains.
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I have an appointment with one of the doctors in her clinic in a couple of weeks and I'm a bit worried about the whole food interview thing. :/
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I had an appointment I cancelled after watching a few of her videos. She takes her observational study too literally. It should be used to form hypothesis not conclusions. And that being so obvious has lead me to doubt her judgement entirely.
Her kindness and passion are clear and certainly appreciated but her methods not so much.
Example: she talked about personally eating takeout regularly , Thai food in this case and being concerned about the coconut milk having come from a can and looking warily at the cans of coconut milk. This was based on her observational study “resulting” in her recommending no canned fruit or vegetables. It’s just silly
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Yes, I noticed the correlation/causation errors in her thinking too. I'm trying not to transfer my feelings about that onto the doctor that I'm seeing -- which is somewhat challenging for me (personally). Thank you for your input! I'll go watch her videos this morning.
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I feel much better after listening to her video as she clarifies some of the 'conclusions' that had bothered me: youtu.be/SQcTVwbcKf0
I know--I am in her study. But all her data is observational, and she lumps a lot of stuff together--she asks how much fresh fruit I eat, but she doesn't ask what those fruits are (papayas/all sugar, or blackberries/super low carb). She asks about dairy, but doesn't separate out organic heavy cream vs. supermarket skim.
There's something called a "healthy user bias" meaning, in general, the same folks who eat fresh fruit (and veggies and beans and "whole grain" and the like) tend to be wealthier, follow Dr.s advice, go to the dentist, exercise, take their meds, eat better, and just take better care of themselves in general.
So, I put very little stock in observational studies. Fact is, sugar is sugar, whether it's packaged in a banana or a banana cake. IMO, your blood and brain can't tell the difference.
Exactly! "No dairy" is an oversimplification. Lactose and casein are inflammatory. Fat, not being inflammatory and good for our brains should be encouraged if it is a good fat source. That said, I go a little cookoo over cheese but better that than sugar! "healthy user bias" is a very important distinction. She also says, "No food out of cans" but makes no distinction between canned corn versus organic coconut cream in a BPA free can. Her intentions are very good but this leads to misinformation. When she told of eating two bananas for breakfast with a bowl of carbs (at least it was oatmeal) is when I realized that I need to further research anything she advises. She also says that Keto is not sustainable but then said she has never done it.
Respectfully I disagree . Fruits have vitamins and minerals that can't be substituted by pills. Bananas which both my husband and I eat have potassium and B6. I always buy organic GREEN ones and eat them before they ripe.
Green underripe is better for sure. Fruits have vitamins that can be found in vegetables. Sugar is sugar regardless of the source. Avocados and Swiss chard both have more potassium than bananas.
Fruit consumption is associated with reduced death from respiratory disease & the association holds after adjustment for major confounders. Increased food and veg consumption reduced COPD progression in an interventional trial. More details on this here: rhyobrain.blogspot.com/2021...
Something I've been meaning to add to the laundry list of potential mechanisms is immune modulating effects of cross-reactive carbohydrate determinants:
Ha--my poor kids were born during the fat-is-bad-sugar-is-fine phase and of course we followed that to a fault...though I also was (and am) a pretty much everything-from-scratch mom. At least we banned soda.
And they grew up to be low-carb health nuts like me. So it's all good. Do you eat berries? They are a great comfort (fruit is the one thing I miss more than anything).
And I agree: if I didn't have PD it would be different. I'd still eat low carb, but not like this.
And I'm sorry about your gluten intolerance. That's tough. Though I guess better on keto. But then, cut yourself a break--how else are you going to bake if you can't use nut flours?
Remember Snackwell cookies? We were told so many lies by the food industry and still are. I highly recommend eliminating seed oils, canola, soybean oil, rapeseed oil, horrifyingly bad stuff.
I used to bake weekly and baked all our bread. No more baking. None. It's okay. Maybe someday I will try nut flours. I appreciate the suggestion especially for the holidays.
I do eat frozen blueberries and apple skins.
I'm glad to hear your kids are health nuts! Mine are becoming little health nuts! I'm so proud! 😀
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What is that about Snackwell cookies? I'm not familiar with them.
I fully agree, the difference in quality between the food of the various countries is sometimes abysmal. I recommend sheep or goat cheeses, they are grazed and make a healthy and good milk.
I do know that Italians and Greeks have at least one food item in common: OLIVE OIL! I didn't know of any other oils people around the globe were using.
My paternal grandma had a goat and every time I would visit, she would milk the goat, would pour some of it in a cup and let me drink it. It was unpasteurized and delicious!
A few years ago I found it easier to stop sugar. Now I have to do as you do: full stop. I start with the intention of “just a little” and end up with two ice cream sandwiches or a whole chocolate bar (dark, but still sugar) in the tumtum. Nope. I just found out I have a high genetic propensity for diabetes, so NOPE. FULL STOP. No exceptions. A1c close to prediabetic. Only exception is some berries in morning smoothie and a kiwi with skin on for constipation.
Yes! It’s like my alter ego. I’m a different person once I start it. The loss of control and discipline starts a downward cascade for me. I truly have to just stay away from it entirely.
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For me, willpower starts at the shopping cart. DH doesn't understand this -- he can moderate his intake (I'm thinking of bread right now), but for me it can't be in the house to begin with.
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I’m glad I’m not the only one! My kids still have Easter Candy and Valentine’s candy
Yes, it's hard because my husband, who doesn't have PD or diabetes, CAN eat bread and fruit and whatnot, and DOESN'T crave it. It's unfair, no? So we do keep breads and some sweets (real ice cream!) and fruit in the house. I guess I've just gotten good at it...but part of that is the full-on-no-exceptions-keto: because one taste and I'm done for.
For me, anyway, it's easier to be black and white. And maybe the fact that I allow substitutes?
I use King Arthur keto flour (w/gluten) and make keto bread and pasta, I make keto desserts, I have the occasional diet soda, I sweeten my coffee w/monkfruit, etc...
Plus, BTW, I eat very, very high fat. That's kinda fun, after all those (misguided?) years of deprivation. And I'm skinny now! I wasn't, eating low fat, before. :o)
We've had some sweetened home made beverages and occasionally cakes, pastry or candy which I didn't care about. However, I loved dark chocolate and ice cream, and my father liked to carry a gingerbread cookie in his pocket (I suspect he had hypoglycemia). So, can't claim that I was raised without sugar
Not eating sugar has nothing to do with willpower and moderation. It has everything to do with your susceptibility to it.The book I am talking about is Bright Line Eating by Susan Peirce Thompson Ph.D.
You can get most of the information online, you don't even have to buy the book. Her 14 day challenge is $14, and you get all the info.
Her diet has great flexibility build into it. Whether you want more meat or less meat or dairy or not it's all there.
This has really opened my eyes and explains a lot of things that I knew were true but nobody talked about them. She also has a page on Facebook it shows a lot of pictures of people that lost weight. The best part of it is you are not hungry while you're doing it. You are free from food, can stop thinking about it. Mary
It does seem a first world problem to be avoiding so many foods. I love eating ( I'm a skinny and can't gain weight) and my wife loves baking, eating well of a wide range of things is one of life's main pleasures as we get older I think.
It took me 2 years to get off sugar! I used to eat a lot of sugar every single day and even some days wouldn’t eat anything but sugar foods!!!! Persevere and don’t give up!!!
I have been off of sugar for almost 2.5 years. PWP for 2.75 years. Since DX I have lost 40 lbs. For a good reason to give up sugar and gluten I suggest you watch "The Magic Pill" on NETFLIX. It promotes KETO as a cure for several common conditions, including diabetes. I found by observation that I have very bad reaction to cheese. I used to eat aged cheddar and blue cheese in sandwiches and salads. My symptoms get worse within hours of cheese. No reaction to pure butter, but I stay away from all other dairy products. I use plant-based cheese subs instead. I use almond milk in my coffee.One of my daughters cannot eat bread in the USA but has no problem with bread in Europe. So I agree that our products are altered from natural.
Your comment about bread from USA and bread in Europe reminds me...
About 40 years ago (USA), we heard observational 'data' that many people that react to products made from commercially packaged flour do not react to products made from freshly ground flour. This was from a man that sold hand grinders and whole grains... but he didn't mention it until after our purchase (he didn't use the information to influence the purchase). It was mentioned as a matter of curiousity.
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Before going totally gluten free I bought whole wheat berries and a grinder after learning that US flour is different than French and Italian. Then I just gave it all up. That was the right choice for me. If you are going to eat bread however, sourdough with a long rise time is the healthiest.
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If someone has an actual gluten intolerance, it wouldn't matter whether it is fresh or commercially ground (at least I wouldn't think so - eta: I'm really only guessing here). I can eat seitan without any problem and that is pure gluten. However I have difficulty with (commercial) bread.
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Come to think of it, I haven't made my own bread in ages. hmmm.
Yes, I believe that is true--gluten (the protein) is gluten. If it is really gluten you react to, seitan would probably kill you...or make you wish you were dead.
But that doesn't mean there aren't other things in bread that might cause problems. What about molds? What about strains of yeast? In commercial breads: preservatives? Stuff that makes white bread mushy? (and so delightful when you are a little kid :o)
Flyboypiper: Just wondering--do you take an MAO inhibitor for your PD? That could be a reason you react badly to aged cheese. It's a long shot, but thought I'd ask...
But wait! My husband made me one with lime juice (see? I eat fruit!) mint from the garden, seltzer and monk fruit sweetener! And yes, some rum...all in the 30g carb allowance.
Though I believe the BEST recipe calls for real sugarcane juice.
I call sugar the White Death... I saw a clip of cancer cells ravenously attaching and eating sugar molecules- it was SCARY! There is absolutely ZERO benefit to the human body...and it is destructive to cells and the body/mind... I agree with you and want to eliminate it completely from my diet- easier said than done... but I will eventually.
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PTT 1 year later. This will be my last PTT status report.
Anti-Parkinson Effects of Nigella sativa (kalonji) seeds 
B1 and madopar experience
Need help please to manage one more sympton
