Making Perkie Smoothies with fruit, mostly berries, some banana, little honey and almond milk:
NO DAIRY
That includes these powders
1. CoQ10: Some studies suggest that Coenzyme Q10 (CoQ10) might help improve mitochondrial function and reduce oxidative stress, which could be beneficial for Parkinson's patients.
2. NAC (N-Acetyl Cysteine): NAC has antioxidant properties and may help reduce oxidative stress and inflammation, which are thought to contribute to Parkinson's disease.
3. Creatine: Creatine is known for its role in energy production and muscle function. Some research suggests it might help improve motor function and slow disease progression in Parkinson's patients
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PHILCAM
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Yes - a personal project since my wife has been diagnosed with atypical PD
I have been following forums and using AI software
I see alot of people here asking others what their experience is - getting feedback from others in the same community helps me verify what the heck I am doing - am I on the right track here - generally speaking?
So here is another thing we do in the morning before breakfast
We have a B vitamin regime - which I learned from AI and PD forums
The MD response can be even worse, as in being in denial of the adverse effects of too much levodopa: healthunlocked.com/cure-par...
Also they are not likely to ever recommend a non prescription disease modifying substance, because these have not passed large expensive randomized controlled Phase 3 trials. It only makes financial sense to run these for high-dollar prescription meds.
Google search footnotes their AI results with links to source material, which I regard as mandatory. Compendium of AI foibles here: healthunlocked.com/cure-par...
I am looking for expertise and community experience to validate possible treatments
I highly interested in starting organic mucuna bean powder but still studying user's experience and advise from experts (if there are any out there) - I am looking for information now -
We are fortunate to have a GP who is very interested in PD - he also uses alternative non prescription supplements along with prescription meds. It was him who worked with me and then our Neuro to get PWP off pramipexole and entacapone. They are out there but very thin on the ground - we hope he never retires - lol
Can I ask how he got off the pram and entacapone? My husband has been on permipexole with CL/LD since day one. He tried Rytary, Entacapone, rasagiline, and oxycapone to help him with his off-times but they didn't help. We've been trying to find his sweet spot with HDT, would love to get him off the Parkinsons meds.
My husband was put on .75mg SR pramipexole by a new neuro after the original was given 6-12 to live - the new guy just did not listen and insisted he take it - he ended up so bad he had several bad falls, he almost passed out every time he tried to stand after sitting, badly stooped and fast losing his facilities and was becoming aggressive. He had been on Madopar from the start - so we changed from SR to 3 x .25mg instant per day for 14 days then dropped the middle dose for 2 weeks and came down slowly to 1 per day for 3 weeks and dropped the last one off - it was a bit hard on him but he was determined to see it thru. After being off it now for almost 6 months he has reduced his Madopar from 125mg every 4.5 hours to 100mg - 8am - 12.30pm - 5pm - 9.30pm and doing very well and is now normal again. Entacapone you can just stop taking it - prami you can't - you have to wean off it slowly. We saw his neuro he has now last month and he was over the moon with how he is now as he has never seen him near normal in the 3 years he has been going to him - he told us to just keep doing what we are doing nad to ring if anything jumps up to bite at any tme.
I applaud you for trying everything you can to help your wife. The "what the heck I am doing" made me laugh out loud. 😊. I too scour the Internet daily looking for thing to help my husband besides the meds modern doctors what to throw at Parkinson's patients. We try many things that are out there that have a positive consensus of helping real people with Parkinson's! We also have a functional doctor in FL that dug deep with all sorts of tests and recommended a 100 day supplement regimen to get toxins out of his body, infrared sauna to help with this, diet changes, high dose thiamine injections, and also EWOT. (Exercise with oxygen therapy). Look up the amazing benefits of both infrared saunas and EWOT. Good luck on your journey, Parkinson's is a cruel disease but I believe a positive attitude wins half the battle!! 💪
As a side note, do know that if you blend fruit, you will lose most of the fiber (which we so desperately need), and it makes your blood sugar levels go up way quicker than normal because the fiber is not able to slow down the intake of sugar. It's better to blend things with vegetables rather than fruits, as they contain less sugar.
Thanks for the veggie tip - trying to get something that she likes to transport the supplement - she always liked smoothies - blue berries for anti-oxidants and banana for fiber
The brain is mostly made fron fat and the brain can run on glucose or ketones, but you don't want too much sugar in the blood because it stops the cells from using ketones. youtube.com/shorts/ezf7Qx_J...
Why not a mix of both? The vege would cut back the need for too much sugar. My PWP is a sugar freak and loves his dairy and meat - doing well on all of it - just keeps his meds away from food intake.
I make my husband a smoothie almost every day. I start with crushed ice coconut milk, flaxseed, frozen fruit Ceylon cinnamon scoop of greens avocado sometimes sauerkraut a good protein powder and then I add all his supplements which include omega-3‘s vitamin B one B12 NAL and a few more that I can’t think off the top of my head. He’s 11 years into his diagnosis and doing pretty darn good.
i’m not sure your point? I put one scoop of greens in it. These greens come from Dr Livingood’s products. I don’t put fresh vegetables in it. He gets plenty of vegetables with his meals.
I said that it wasn't all about Veg. Note what he says near the end about eating things as they come out of the ground and not processing the in any way.
All the (full fat) dairy you want and NO SUGAR. (That includes honey and banana. Though I happen to think a few berries are OK.)
IMO it is a good way to disguise supplements!
Coffee is also, since it's naturally a little bitter and easily hides powders that are a little bitter themselves. Most supplements can tolerate heat for a little bit, though I try not drink it scalding hot. I add a tablespoon of unsweetened cacao powder plus monkfruit plus bocasweet to taste...plus a lot of heavy cream.
well, it depends on what you consider more likely to be the cause of Parkinson's disease.
The last hypothesis is that it is a disease linked to a lysosomal disorder that favors the accumulation of ASynuclein. In this case the information and its relative importance varies a lot and in my opinion neither 1, nor 2 nor 3 will have any effect, but I am not an expert.
The relative importance between the information cannot be evaluated by an AI or a survey but only by competent people who know the situation from which the information itself derives, not by me for sure..
Addressing lysosomal disorders and the accumulation of alpha-synuclein (α-synuclein) involves several therapeutic approaches:
Lysosomal Disorders
Enzyme Replacement Therapy (ERT): This treatment involves replacing the missing or defective enzyme in patients with lysosomal storage disorders. It helps break down the accumulated substances in cells1.
Substrate Reduction Therapy (SRT): This approach reduces the production of the substances that accumulate due to the enzyme deficiency.
Gene Therapy: Experimental treatments aim to introduce functional copies of defective genes to restore normal enzyme production.
Stem Cell Transplantation: This involves transplanting healthy stem cells to replace damaged cells and restore normal function.
Alpha-Synuclein Accumulation
Chaperone Proteins: These proteins help refold misfolded proteins and prevent their aggregation. Enhancing the function of chaperone proteins is a potential therapeutic strategy2.
Small Molecule Inhibitors: Compounds like nortriptyline, originally used as antidepressants, have shown promise in reducing α-synuclein aggregation.
Monoclonal Antibodies: These antibodies target and clear α-synuclein aggregates from the brain.
Tyrosine Kinase Inhibitors (TKIs): These drugs, originally developed for cancer treatment, are being explored for their ability to clear α-synuclein aggregates.
Well, now let's evaluate the relative importance of this information, because it is not evaluated based on relative importance.
but relative to what? The importance relative to the goal which in this case I think is an effective treatment for PD.
So the next question would be: which of these possibilities has proven to be the best treatment for PD?
None in my opinion, and it goes for everything else.
We can be a little smarter and ask if PD is considered a Lysosomal disease and then if there are case reports of PD treated as a lysosomal disorder. The case reports are more experimental and advanced.
I don't know the answer of the AI, but at this point a good updated clinician knows more than all the AIs. Or others PwPs su HU CP .Maybe.
Yes, there are some case reports exploring the use of drugs for lysosomal disorders in the treatment of Parkinson's disease. These studies mainly focus on drugs that can influence lysosomal metabolism and function, such as those used to treat lysosomal storage diseases.
For example, some studies have examined the use of drugs like ambroxol, which is known to increase the activity of glucocerebrosidase, a lysosomal enzyme. This approach has been explored because mutations in the GBA gene, which encodes glucocerebrosidase, are associated with an increased risk of developing Parkinson's.
All of this might be interesting to some - but I have decided to go with Ayurvedic medicine - vs western drugs that have too many negative side effects
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Hope through Meditation and Mindfulness 
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