I got my wake-up call last night. I fell out of bed 🙁
I have been doing most things right, but have been holding onto a terrible vice: Pepsi. I love Pepsi when working outside or inside or just watching TV. Mostly I justify it with an outside project.
There is no way a microbiome can flourish when drenched in Pepsi. I know this.
I have slept well for 2 weeks and have not fallen out of bed for almost a year. I knew I was tempting fate with my Polar Pop yesterday. Fate struck back last night.
So today I get back on the wagon. Honey is the only sweetener allowed on the Specific Carbohydrate Diet. I can live with that. Probably thrive with it.
I also just started a 48 hour fast 15 minutes ago. Fingers crossed.
Sugar is the Devil!
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Bolt_Upright
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I am sure you won't have a problem. I talked to that guy Ron from FB yesterday and he pointed out that besides water, you really need salt when fasting. He said, for his fast, he just had water, coffee, broth, and some salt. Said he fasted for 62 days and then went OMAD carnivore. Says, besides PD, he fixed his diabetes. Said he was on insulin 3 times a day. This is just what he says.
there's some wonderful logic on this forum. You've fallen out of bed, and concluded that it demonstrates Pepsi or sugar are responsible. And you may not have PD
I have a confirmed diagnosis of PD for 5 years, do not restrict my sugar and have never fallen out of bed. In the 10 years my Dad had PD he didn't restrict his sugar and he didn't fall out of bed either
Bolt is attributing his falling out of bed to the sugar in Pepsi possibly potentiating the increased activity of his chronic condition which is not PD (at this stage) but REM Sleep Behaviour Disorder. REMSBD causes a loss of the normal "paralysis" during sleep and hence allows for the acting out of dreams (such movement leading often to falling out of bed during dreaming). Although most cases of PD do not feature prior REMSBD, that sleep disorder makes a subsequent diagnosis of PD very likely, and Bolt is trying to reduce the sleep disorder itself as well as reduce his chance of developing PD.
my daughter is getting married next year probably in May. My stepson is getting married in September. It may be a honeymoon period but while I can be normal I intend to be. So I will be eating and drinking like any other guest at the wedding.
I remember when I was diagnosed in 2018 Colin Potter describing how he was wobbly at his daughter's wedding and explaining to people that it wasn't nerves it was the Parkinson's. As a confirmed blubber it will be the nerves when I struggle with my speech
Colin Potter at the time was filling the web with his solution to reverse his PD by giving up all the fun in life and eat a restricted diet and a pile of supplements instead.
Sadly, in the videos I watched after his interview with Sarah King, he seemed to be rapidly deteriorating and after 2019 disappeared from view.
I know this disease progresses but Carpe Diem - and don't let the disease turn you into someone who tries to live a bit longer by giving up the pleasures in life.
I mostly kind of agree with you Winnie. And congratulations on the upcoming wedding!
My goal is to find the right balance between healthy living and being a monk. I have the advantage of having gone no carb no gluten for 9 months back in 2019 to try and regain my health after almost dying from the flu and developing Atrial Fibrillation. I went from 230 pounds to 165 pounds in 6 months, got my heart shocked back into rhythm, my dandruff I had had for 20 years went away, and the stiffness in my body that I had attributed to old-man-itus went away. I felt as good as I had ever felt. It was only after I started backsliding and eating like crap that my RBD advanced (rapidly) from the occasional word to throwing pillows, hitting walls, and falling out of bed. I take this experience as a valuable clue. At least for my form of whatever it is I have.
And you are correct about Collin. He should update his Fight Parkinson's web site as whatever is on there has not stopped his progression. His FB page does have updates: fb.watch/fCY7E5k016/
if it's working for you and not ruining your life, stick with it. I have a feeling Americans eat a lot more refined sugar than we do. I like the idea of running the machine on the fuel it was designed for, and I think broadly, in a modern context, that's a Mediterranean diet. So I eat natural sugar in pineapple for breakfast, a peach with my lunch, and honey in my salad dressing. But not cakes, biscuits, sugary drinks and the like. Usually. I've just come back from a rugby club lunch and eaten a sugary cake for dessert, but that's very unusual. At a cellular level we need glucose to breath
Be careful, Bolt! If you fall off the wagon, don’t fall off the wagon :-). But I know. Sugar is so tempting. Why does something so nutritionally devoid feel so great to have (at the time)? Ugh! Glad you weren’t injured. That’s some thing!
Sugar is the devil. Just because you can eat it doesn't make it food. Cool whip, Miracle whip, margarine, Coffee mate - artificial sweeteners are poison, high fructose corn syrup, highly processed foods like cereal and fast food 😔
Concerned about you "falling" out of bed. This is loss of proprioception. I came close early on in my disease process.
Babies fall off beds and furniture because their nervous system is immature. Adults do it because their nervous system is injured. This can lead to serious injuries, I would put a bed rail on for safety. Especially since it's happened more than once.
Yes. Falling out of bed is a symptom of my REM Sleep Behavior Disorder. It had been nearly a year since I fell out of bed (or punched a wall or threw a pillow) so I figure I am doing something right. Just need to keep tweaking the protocol. Thanks!
Sugar has been the culprit for the past decade or two. But sugar is not bad. The brain prefers sugar in the form of dextrose.
The body wants sugar so much that membrane-bound enzymes in the intestines exist to catch every glucose molecule passing thru the gut. It doesn't do that for any other nutrient in the body. Overindulging is bad. But even water is dangerous if overdone. What makes sugar dangerous is that it gets added to everything.
These days it's hard to find food that doesn't hasn't had sugar added. The body wants sugar because it enters the Krebs cycle easily.
Without sugar the body must turn proteins into amino acids before they can then enter the Krebs cycle. And at the same time nitrogen must be taken out of the amino acids, another detoxification step that isn't needed with sugar.
I've been interested in low-carb for it's effect on my running. I started with The Zone Diet. By Dr Sears, it said to balance protein with carb for every meal. The perfect number is 0.4 grams of protein to 1 gram of carb. Then I tried the Atkins Diet. That diet limited carbs and proteins but required large amounts of fat. Fat breaks down into fatty acid which the body can use for energy. I've also tried pure fasting. Living without any food for weeks. Without food the body is forced to use fat for energy in the form of ketones.
Every expert has his favorite diet. And everyone has a website. And they get pretty irate if you argue with them about their methods. I found I could lose weight on any of these diets but side effects were too severe: Bad breath, little energy, headache, vision problems.
I ran a 50 mile race with ketones as my only energy source. I was the last finisher. I'd pitched a tent before the race. After I was shivering and cramping from head-to-foot. It took 20 minutes to crawl from the tent to my truck. Then I sat in the drivers seat sipping gatorade all night and by morning was able to drive two hours home.
A week ago my husband fell off the bed. He was fighting attackers. He definitely has REMD like you because he hits out in his sleep - which is why I sleep on the sofa.
In recent months he has been slack in wearing his red light cap. In addition to his coronet duo I bought a red light cap from KINREEN which has red and infrared light. We use this when we travel as it is more convenient than packing the coronet.
Also much cheaper costing about usd110. It also has a setting with lights at 1098 nm which is supposed to be really good for neuro issues.
I can only attribute recent changes in mood and sleep to his being slack about his red light therapy.
My mother who has mild dementia also regressed when she was not diligent with her red light therapy.
I also went through your old posts about the brain gut connection. My husband has many food intolerances including gluten and I really wonder about the connection between his gut issues and PD. Also as the gut produces dopamine as well psychobiotic PS 128 has helped him tremendously.
Avoiding foods he is intolerant to, taking bone broth to heal the gut, probiotic Reuteri , glutamine have improved his bloating . I hope his micro biome and leaky gut are being set right and PD makes no progression. He is better than in 2019
Read Super Gut by William Davis the author of Wheat Belly. FYI my husband uses the red light cap 15 mins on the red light mode and 15 mins on the blue mode with the 1098 nm light. He now does it 2x a day.
I totally agree with you that gluten and lectins are big disrupters . In October 2022 my husband was tested for 270 food intolerances and he had 70+ foods that caused inflammation and bloating. Progressively as the gut heals he can eat more foods but those marked red like gluten, eggs and dairy probably must be avoided.
Is there anything that your doctor prescribed for your sleep disturbances? My husband takes 2 Honokiol caps before bed. May have to increase it
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