Parkinson's Movement
13,298 members11,875 posts

My action plan to reverse the disease

Maybe Im crazy, maybe Im a genius, but here goes. Based on my personal research, I have developed an action plan for myself. Follow along if you want to, but beware, I am not a physician. I welcome any input from my friends up here. Im not putting down the doses, this will vary based on numerous factors such as body mass, severity of disease, how crazy you are, etc...not saying anyone else should do this but we should all always BEWARE OF INTERACTIONS IF YOU ARE CURRENTLY TAKING SUPPLEMENTS AND Rx MEDS PLEASE!!

1. Mannitol - to reduce the burden of sticky misfolded alpha synuclean plaque buildup in the brain. (edit 5/19/2018 ) - not sure how much of it gets into the actual brain. May reduce peripheral A-synuclean plaques, as shown by improved sense of smell.

2. PQQ - to prevent future misfolds of alpha synuclean. Also to regenerate mitochodria in cells. (edit 11/12/2017 Adding CoQ-10 to my PQQ)

3. Turmeric / curcumin - increases Glutathione, reduces alpha synuclean burden, reduces inflammation and pain.

4. Whey Protein Isolate - increases Glutathione and precursor amino acids.

5. Vitamin C high doses - powerful antioxidant.

6. EGCG - taken with Mucuna, helps get the L-Dopa across the blood brain barrier by preventing metabolism peripherally, like Carbidopa but without the side effects.

7. Vigorous aerobic exercise -as much as possible. walking, swimming, biking, eliptical machine - key to Neuroplasticity

8. NAC - increases Glutathione, ongoing studies indicate may reverse PD.

9. Isradipine - calcium channel blocker currently in phase III trial for PD neuroprotection, may slow the death of neurons. (Update 8/2018 i no longer take this)

10. Hypnosis - I tried this and it helped so much, Im not kidding. There is a case study on the web, heres the link ncbi.nlm.nih.gov/pubmed/234...

11. Thiamine

12. Chiropractic care. (I stopped going. Not sure how much good this is unless you have a good dr)

13. High doses of good quality fish oil.

14. Ketogenic diet (edit 11/12/2017 Recommend Organic Nutrition, decreases toxic burden) with intermittent fasting)

15. Dr Marty Hinz's Amino Acid protocol. Been on it a short time and feel better.(5-HTP, Cysteine and Mucuna, plus vitamin and mineral co-factors)

16. Creatine - helps muscles handle fatigue. Do not use if your kidneys aren't tip top.

17 resveratrol

18. L-Taurine (expensive so i no longer take)

19. Low dose lithium. May increase BDNF. Certainly reduces brain fog)

I will edit this post as i learn new information.

I am comparing the brain to a leaky bucket of water. Need to fill the bucket faster than the water leaks out. Reduce plaques faster than they can re-form and at the same time, grow new neurons faster than they can die off. There we have it! The reversal process right there. However, it may be a never ending process until some sort of gene therapy comes along.

Google search each one and add "parkinsons" to the word you are searching to see some research and studies.

thank you for your thoughts and feedback. I may modify the plan as I learn new things, but this is where I am so far. My final disclaimer - do not take my advice because I am not a doctor. Does that get me off the hook from ever getting sued?

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11. allithiamine

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Interesting! Looking into it. Thank you!

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Have you tried it? Does oral work? Thank you.

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It works as well as any of the numerous supplements, vitamins, herbs, fish oil or snake oil that currently in use. They each give PwP hope where little else is to be found.

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Yes it does, I took it for a month and I'm giving it a rest and I will take it again. I definitely felt better Mary

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Which brand do u use and at which dosage pls. How does it help? Thanks

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Ecological Formulas (the only brand I know of)

100mg twice a day/ twice a week

I believe it works

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I TAKE 100 MG 2X DAY FOR 2 DAYS THE SAME BRAND. WHAT DID YOU NOTICE SO FAR.

AND ICE COLD APPLE HARD CIDER I RECOMMEND

"ANGRY BIRDS"

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My vision improved and strength increased as evidence of ease of entering and covering myself at bedtime. It gives me hope.

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There are different forms of thiamine. Do some not work and some do? I have a B complex here that has 100mg thiamine mononitrate in it. You think that its ok?

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ncbi.nlm.nih.gov/pubmed/978282

"...Oral administration of lipid-soluble allithiamines [thiamine propyl disulfide (TPD) and thiamine tetrahydrofurfuryl disulfide (TTHF)] rapidly increased thiamine activity in whole blood, red blood cells, cerebrospinal fluid, and urine in normal and thiamine-deficient subjects. These thiamine congeners also restored red blood cell transketolase to normal in alcoholics with thiamine deficiency. Such repletion equaled that produced by parenteral, water-soluble thiamine hydrochloride (THCl) or thiamine pyrophosphate (TPP). Oral administration of water-soluble thiamines (THCl, TPP) neither elevated thiamine activity in biological fluids nor restored transketolase activity to normal in alcoholics with thiamine deficiency presumably due to their rate-limited intestinal transport. Oral administration of TPD eliminated lateral rectus palsy in patients with Wernicke's encephalopathy. Orally administered allithiamine vitamers are therefore recommended for prophylaxis and treatment of thiamine deficits because while having essentially the same biological properties as parenterally administered water-soluble thiamines they have not produced any untoward effects after long-term administration and are far more efficiently utilized."

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and I can brush my teeth with my right hand without my hand "freezing". Normally I brush my teeth with my left hand or use electric tooth brush. Yesterday I caught myself brushing using my right hand. I was surprised. I thought before I tell my wife the good news I will wait and see next time. Next time was the "proof in the pudding". Add that to and thank allithiamine.

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Hallelujah, Brother!

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I take it to waiting forever

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Catlou you've been taking it a long time and having no positive effect?

RoyProp How long have you been taking it?

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maybe 3 months

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Same here your the one Roy who suggestestrd this type.

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Can u send me a link...to purchase b1

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A member of weareparke a group from Italy told me about it. I ordered it from England from biovea. It's a vitamin B1 High potency 500 mg with magnesium 100mg. He told me they are as good results with that as with injectable B1 period I decided against injectable B1 because in us they are all made with aluminum.

Www. Biovea.com

1 800 961 4750

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Do you notice a difference? Is it worth taking? Thanks Deb

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I think I have noticed the difference I think I'm feeling better sorry to be sounding so wishy-washy. I have started it again after not taking for about 3 weeks. I will take it for about a month now again. Mary

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What is pqq ?

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google.com/amp/michaelrucke...

Here is some basic info to start

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Also - have you heard of mucana - natural levodopa ? I also read good research on light therapy

.

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Yes, mucuna is great for symptoms but is it a cure? I dont think it treats the cause. I do take it once per day. I looked into light therapy and i dont think its practical, and not sure the benefits are long term, if it even really works. Retinas prodhce dopamine, says the theory, but does it get back to the parts of the brain where we need it?

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What about problems wiith vision like depth perception, and having all things look fuzzy or like u r underwater? Neuro-ophthalmologist reviewed hubby's records from regular eye doctor we have seen for years who also happens to be an ophthalmologist. This neuro said we don't need to see one that we need to see a cornea specialist. His vision has been corrected and these things continue. we see with our brains, not with our eyes.

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People with PD dont blink as frequently as is normal, so dry eyes can be the root of this problem. Try lubricating eye drops, artificial tears.

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Levity is the best of healers, keep your good mood going my friend. If you feel better keep doing what you did.

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Simple but effective advice👏🏻🙋🎈

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Sounds like a good plan to me. What about diet? A relative of ours is trying to convince us to go vegetarian with no dairy at all.

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I have seen evidence of ketogenic diet being good for brains, as well as anti inflammatory diet. Probably good to avoid dairy, gluten.

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I went the keto route with no good accomplished. I will not go gluten free.

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Personally i run best on ketogenic, but its difficult to stick to with kids and living in America!

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Good list! I would be concerned about whey protein isolate/concentrate/extract since these products contain glutamate which is excitotoxin and after the age of 50 supposedly the body's ability to tolerate excitotoxins declines.

I would also be concerned about vitamin E - there is a lot of controversy about it supplementation - some studies show that it might be increasing inflammatory cytokines in some genotypes:

"In healthy control subjects, the effect of α-tocopherol supplementation on the production of inflammatory cytokines appears to be dependent on an individual's genotype. These genotype-specific differences may help explain some of the discordant results in studies that used vitamin E."

ncbi.nlm.nih.gov/pubmed/225...

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I like your plan very much. Not sure about St John Worth, vitamin E, Vitamin C though.

I would (will?) definitely add intermittent fasting to the treatment.

Rationale for IF :

ncbi.nlm.nih.gov/pubmed/205...

Keep us posted !

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yes intermittent fasting. i lost almost 20 lbs so far but i ' m not hungry, ,more so in the morning. so i eat 1 meal i really like and try to keep under 600 caloris tonight is pizza delivery. too hot out. 95-98 degrees. and i love crab cakes. dockside has them premade at most grocery stores. 4 f0r about $8. had a slice cinnamon toast with cream cheese and blueberries. good coffee with carmel creamer and manitol which im almost out of. saw manitol sippy sticks on Amazo. back to my Angry Bird. google it.

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Love crab cakes too ! :-)

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Mannitol sippy sticks on Amazon? Like freeze pops? Vs powder?

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Most concise, realistic and understandable plan of action I've seen so far, looks like you have done a lot of research. This is just what I've been looking for. Will look into this and follow with interest.

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You forgot vitamin b complex ,magnesium and CBD. My sense of smell has come back since CBD. Not sure about vitamin c and e.

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I agree about the vitamin B complex, especially if you have damage from Carbidopa. I have not looked into Mag. I cant take CBD because of my job.

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look into macuna puriens.

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Try Non THC CBD - Hemp

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now, what fun is that?

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mine too. weird. the CBC helps with anxiety, B complex plus B12 a few days/wk.

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Does Non THC CBD work?

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I believe that it does. now using CW Everyday Plus. its stronger. there is no "high". it is neuroprotective. also use organic canadian hemp oil. I think I am also getting a benefit from the lima beans. it takes several hours to work but keeps tremor down for many hours. noticethe mornings are better if I take the bean smoothie before bed. its all guesswork as I seek to understand how all this affects me.

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what is your dosage on CBD.? How long to get smell back?

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dropperful (20 drops) of the Everyday Plus from CW. add some thc drops if needed.

dont smoke or vape

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Will Reputable companies deliver THC drops across state lines (I wonder)?

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I think it is against the law :( unless you have a friend willing to help.

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the Everyday Advanced uses less. the recommendation is 5 drops

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Coconut oil, meditation. Cannnabis. Oil,

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I have eaten a sht-ton of coconut oil over the past few years and didnt do zip for me. Although the theory looks good.

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changed from Coconut oil to organic canadian hemp oil plus fish oil and CharlottesWeb CBD

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how much coconut oil do you take a day pls?

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CBD w or w/o THC?

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CBD oil - w or w/o THC?

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Dosage of each please?

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3T/d Coc Oil?

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Thanks for all the info. Can u pls send us the dosages that you take. Have you noticed an improvement. Of all of these supplements which one is the most important do you think. Thanks

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Charlottes Web CBD...ck the dosage as Everyday Plus is not as concentrated as Everyday Advanced. to the bottle I add some cbd with thc oil. since I am not medicated yet, I use the thc mix to help with the tremors, anxiety and appetite. the plain cbd oil as a nutritional supplement, but it helps even without the thc. I have been using the enhanced mix for about 6 months .

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How long have you been trying your method and what results can you report? Thanks

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Honesty, the first session of hypnosis did the most good. Freed me from the dreadful unfounded anxiety and reduced my r leg tremor a great deal. Ive been on some of the items six months, some six days. Like i said, its ongoing and you have to replace the water faster than it leaks out of your bucket. There is no "cure" that i have found. Yet

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i cant believe i just typed s full page on hypnoterspy and its gone. well i dont have time now but i have all the books an over the next few days i will try to post for free to all my parkison friends some methods/suggestions for self hypnotherapy. i owe St Jude a favor in his name.

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Looking forward to it thanks

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Looking forward to it too !

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But, my friend. Take note. All placebos (via a positive attitude, a hopeful attitude, faith, happy friends, hope via sugar pills) improve your outlook/function by 40% over baseline in most blinded PD studies. Choose the right stimulus and you have no significant costs or side effects. I am a surgeon retired by PD. Looking for next mission that is not influenced by lack of nimble fingers.

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Im all for placebos!

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Ah beware: the Placebo!

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I love the attitude ,if im going down im going down swinging ..heck ya

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recently diagnosed as well. Also in your frame of mind trying lots of things to arrest progress. And most of them are on your list! I make a green smoothie in a.m. with 1/2 c. canned and drained lima beans, veggie juice, avocado, fresh pineapple, banana, kiwi, kale, berries, papaya, hemp seeds, vit c. I make a big blenderfull. divide it into 3 jars, freeze two. saves labor and mess... CBD oil first thing in a.m. for anxiety. A couple of tbsp of beans with lunch. Flat beans are a natural source of dopamine.

I exercise 2x a day, walk, bike, swim, weights etc

I have found three products from "Life Extension" helpful. DopaMind, Mitochondrial Optimizer with bqq and Super Ubiquinol with Bqq. I also take Lions Mane and Phosphotydl serine/Choline with NA Cysteine, Carnitine and Choline which I rotate. I take niacin and fish oil at night with melatonin (4x wk.) so far my energy is lots better, tremor is reduced by the beans and CBD, general outlook better and Neuro says keep doing what works. My next step will be Macuna Puriens and Isradapine. Good Luck to us and all the others seeking answers...

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It was my thought that I would drop my first dose of alprazolam. Who needs anti-anxiety first thing in the morning? ME

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yeah, thats me.. surge of energy upon waking that is over the top. I take a dropper of cbd oil with a very scant amt of enhancement. since I added the beans, the tremor is ever so much better as well

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May I ask what kind of beans, fresh, frozen or canned?

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the fresh ones have cyanide in them that has to be cooked off before eating. no kidding.! I used canned, unflavored flat beans (butter beans, lima beans, etc). been doing this for 2 weeks. 1/2 cup per daily smoothie. starting to slowly get back my energy and hand tremor is better. we will see where this goes, but at the minimum, its packed with nutrition and helping me to keep my body healthy.

I am one giant one personal clinical trial. :).

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Beans are good idea - I use in smoothies too. My fake MP (MUCUNA prurien)!

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Dropper? Maybe 15 drops or so / dosage?

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All but lions mane sounds 👌🏻

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I take Irasdipine even tho the data is weak. Look into Inosine. The data is more robust. Also, check out UDCA. U of MN is beginning a trial. TUDCA is the same thing as a supplement. I hope your stack works for you.

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We have as many anti Parkinson's protocols as we have number of people on this list. Something just has to work. Here is another one and it is prayer. It has always been very hard for me to pray. People that have Parkinson's can be very spiritual, I always lacked something in me.

I have found a book by Lisa Barnet "From questioning to knowing"

73 prayers to transform your life.

The prayers were given to Lisa by the akashic records Masters, she just wrote them down. If anyone is curious you could take a look at the book on the Amazon. They are more Spiritual than Physical prayers. However you do get a physical cure

They give you directions for opening up your heart to start the prayer.

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Never underestimate the power of prayer

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Bassofspades, prayer and how we relate to God may be the greatest power we have available to us for our healing. The way I look at it is that 64 years of my best thinking has gotten me into the health crisis that I'm in now. And even though I have a role to play and I have work to do, I don't think more of my same best thinking is going to be powerful enough to get me out of this health crisis. I need something a whole lot more powerful than me (and a whole lot more powerful than the doctors, too).

I have a small booklet entitled "Healed of Cancer" by Dodie Osteen. It documents her healing several decades ago from a type of liver cancer that normally claims people's lives very soon after dianosis. She is a registered nurse and has one son who is a medical doctor, so the family is not totally woo-woo. She says that she was healed by applying daily prayer and daily study of all of God's promises in the Bible about healing. These scriptures about healing are all in her book, and I read several pages from it every day. As soon as I read the last page, I go back to the beginning and begin reading it again. (Sort of like a continuous loop tape.) My faith is not always firm, and I have doubts at times. (That's when I ask God to heal my unbelief.) I am willing to suspend my doubts on the chance that it will be God who heals me. And I'll keep on asking for His healing for as long as it takes.

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I see miracles great and small every single day. I dont belong to any organized religion but I do have conversations with the lord and I ask him for what I really need. He always delivers in a timely fashion. That is why I believe I will be healed.

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ARE YOU TAKING ANY MUCANA. WHAT AND HOW MUCH.

PLAN - WAITING FOR ECGC

MORNING AND LATR AFTERNOON - MUCACA ? DONT KNOW HOW

MUCH OF THIS WITH 1 ECGC KRILL OIL & ittamin c

at lunch and betdtime - WILL TAKE MP WITH QUERCET W/BROMELADE

STILL WAITING ON DELIVERY

I HAVE ISRAPADINE & NAC

WILL GET PPQ

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I take 2 capsules of now dopa mucuna first thing in the mornings. If you dont have egcg yet, drink a cup of green tea. Its just as good or even better. Egcg comes from green tea.

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I start the day with a conction of hot green tea/chamomile tea to which I add 1/4 tsp powdered mucuna,1/4tsp tumeric, 1/4 tsp carnosine, grind of pepper, tblespoon of mannitol, honry, cinnamon and coconut milk. Istart by taking a tblsp of hemp/fish oil before consuming. i also take lots of other supplements during the day.

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Anyone has idea & personal experience on taking Vit D3? I have been living with PD for about 8 years. I started to take D3 for a month. Not notice any change yet.

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I have been taking D3. Cant hurt but no profound effect.

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Yes vitamin D3 is far better than plain D (which is toxic by the way in larger dosages). The best Vitamin D3 is from sunshine, so to try and get a 1/2 hour in daily - sit outside with bared arms, legs (from knees to feet) and face exposed ... any time you can do that is great: reading a book, knit or crochet, talk on phone, etc., whatever to make that 1/2 hour fly - it will be a great time for R & R for de-stressing which is important.

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thats me.... i think it improves mood as well

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D3 will help your bones stay strong along with sunshine, cal, mag and trace minerals. I just broke my hip and it healed quickly on that routine plus exercise

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Welcome bassofspades to the world of reversal. I do not claim to have reversed my PD but am managing withou meds for 11 years. Was diagnised in 2003 and stopped meds in 2007. Exercise, yoga and diet all help a lot. Will send link to my story "My Tryst with PD" shortly

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The link to the article is

Link: helplibrary.blogspot.in/201...

Pls let me know how you are faring

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What a journey. Mary

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NAC is interesting. I am taking 600 mg (pill form) 1x morning and 1x bedtime to mirror a clinical trial which began over a year ago. The trial, which was a combination pill and infusion, showed promising results:

"This study reveals a potentially new avenue for managing Parkinson's patients and shows that n-acetylcysteine may have a unique physiological effect that alters the disease process and enables dopamine neurons to recover some function," said senior author on the paper Daniel Monti, M.D., M.B.A., Director of the Myrna Brind Center of Integrative Medicine, and the Brind-Marcus Center of Integrative Medicine at Thomas Jefferson University.

In this study, Parkinson’s patients who continued their current standard of care treatment, were placed into two groups. The first group received a combination of oral and intravenous (IV) NAC for three months. These patients received 50mg/kg NAC intravenously once per week and 600mg NAC orally 2x per day on the non IV days. The second group, the control patients, received only their standard of care for Parkinson’s treatment. Patients were evaluated initially, before starting the NAC, and then after three months of receiving the NAC while the control patients were simply evaluated initially and three months later. The evaluation consisted of standard clinical measures such as the Unified Parkinson’s Disease Rating Scale (UPDRS), a survey administered by doctors to help determine the stage of disease, and a brain scan via DaTscan SPECT imaging, which measures the amount of dopamine transporter in the basal ganglia, the area most affected by the Parkinson’s disease process. Compared to controls, the patients receiving NAC had improvements of 4-9 percent in dopamine transporter binding and also had improvements in their UPDRS score of about 13 percent.

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I'm taking a granular form of NAC (in water) twice a day for the last week. Generally feel better but has also totally eliminated my thick spit and drooling at night. Mouth feels cleaner all the time. First morning I had very very dry mouth but this has stopped now.

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The amazing Dr Hiinz seems to recommend 1500mg 3x/day starting at noon.

healthyselfnow.com/MTOproto...

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Wow that's a lot more than the trial but I get it. The trial includes a mix of infusions and pills. I am going to increase my intake since I am only taking the pills.

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Israpidine is also a clinical trial underway and is a drug used to treat high blood pressure. Anyone with high blood pressure and PD should ask their doctor for Israpidine according to the literature.

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What about starting to do regular exercise?

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Of course! Thats on my list as #7. Best way to regenerate neurons.

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I agree that's critical. Unfortunately a foot cramp is making my usual cycling difficult. Anyone have a foot cramp problem solution?

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I think it sounds like a lacking of one of the essential chemicals, but I am not sure which one it is. Does anyone know?

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Cramps can be caused by a deficiency in electrolytes. Start with sodium, (non iodixed sea salt), next calcium, potassium (cream of tartar), then magnesium. Try this - mix 3 oz premium orange juice (not from concentrate) with 1/4 tsp non iodized sea salt and 1/2 tsp cream of tartar. Twicea day. That should balance your glucose and electrolytes and you will have more energy too.

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It looks like they took all the snake oil cures and the desperate people and put them in one place, which is handy in case you want to go back to 1890. Have you considered that you might be poisoning yourself ? What does your Doctor, think about this. You are quite sure you understand the interactions ,side affects and long term affects of all of that. Are you going to mix it all together in a big vat or take each one separately or just soak in it ?

This is without a doubt the most ridiculous post that has appeared here:

- did not even include Garlic, Witch Hazel, eye of newt, coconut oil, A535, anything from the onion family ,tobacco, coffee, or bats wings , ridiculous, although it had to happen eventually. Thank goodness for the Food and Drug Administration.

Lets have a vote

1/ This is a foolish idea that could hurt someone ( Hit like on this reply)

2/ I am dead wrong and should be more careful that I might upset some one and should be more sensitive and politically correct ( hit like on the the first post or hit report here.)

enough

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Seriously, i appreciate your feedback. I could take traditional symptom treating meds approved by the fda and continue to get worse or i can take matters into my own hands and fight with everything ive got. I may kill myself trying but i will not give up and submit to a fate of being unable to control my own body. There is research out there for us to pore through. I will make myself a human chemistry experiment if there's one chance in a million that i can beat this thing. And i will .watch me. The good lord only gives us s challenge if he thinks we can handle it. Maybe i got this disease for a reason, and that is to find a way through this and take others with me to victory. God help us all.

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Oh a mission from God. Well that's a completely different thing. Sure go ahead. Great idea.

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Thats right, and im getting the band back together! Lol

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I for one appreciate you sharing your home remedies. I feel myself going downhill fast, can't get any help from my doctors, yet still going to work every day (at a law firm), I'm only 52. I don't have a "caregiver". I feel I am under the gun to fix myself before I am no longer able to. I started taking Niacin about a month ago based on someone's advice here. The Mannitol I ordered came in the mail Yesterday morning, so I started taking that. My neurologist won't even give me a prescription for anything. It makes sense that Mannitol would clear the protein clumps in the brain. Why wouldn't anybody want to try that? Especially me, when the future looks pretty grim with my atypical Parkinsons.

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Thanks for sharing your story. Any luck with the niacin?

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I like your attitude! I, too,have developed a personal plan, based on research and learning from others with PD, and studying the pathophysiology of neuro-degeneration, and the process of neuronal death with Parkinson's etc. I use some of the suggestions you have in your list too. Basically, though, I feel exactly how you do about this so called 'dreaded disease'. I have decided to take matters into my own hands and fight with everything I've got! Knowledge is power! You are right that the Lord gives us a challenge, and he knows we can handle it. Don't ever underestimate the power of prayer. A few years ago, I had severe acute pancreatitis, and had to be rushed to a regional hospital. The infection had gotten so bad that I was on the verge of sepsis. My wife had everybody praying for me, because the doctor's were doubtful that I would make it! After 2 surgeries, and 10 days in intensive care, with infection taking the life out of me, my pancreas, liver and gall bladder all infected, I did make it. It was touch and go, and I gave the credit to the doctor's, and medical team, who saved me, and to the prayers that so many had done, on my behalf. There is a path to victory!! I have found that, concerning PD, my doctor's give me limited information, treat me, don't always understand the far-reaching effects PD has on one's body systems, and that my best resources are researching information from fellow sufferers of PD, and participating in clinical trials, along with studying all the research and materials I can find, concerning ways to understand and deal with handling the day-to-day living with PD symptoms. Seeing a doctor, twice a year, for 20 minutes of their time, is not going to help me enough to fight this beast of a disease. Resources, such as support groups, blogs, forums, communicating with fellow Parkies etc. is where I get my best ideas to help myself. Thank you for sharing your protocol and thoughts with us!

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You’re wrong

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Thank god for that too

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Interesting plan. Have you taken into account the need for a transport mechanism across the blood / brain barrier?

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Egcg, my friend!

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I am now feverishly studying Dr Hinz's amino acid protocol. Its very complicated, requires precision and lots of lab testing to get the balance perfect. A very individualized approach is crucial. Hard to just screw around with.

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Thank you for sharing I want to follow your posts.

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you are welcome. We're all in this together and if we all put our heads together, we will win the battle.

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I've been using almost all of the same supplement and therapies, and the several more. I'm finding that using a dual approach of neuroprotective suppliments, and dealing with alpha syncnuclean has helped improve my symptoms tremendously. I am suprzed you have not looked at Mucuna and the Hintz protocol?

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@Chandleram Oh i sure have! I use mucuna daily. As for the hinz protocol, it looks like it requires careful monitoring to get it right. Tell me how you approached that please.

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They say "massive doses" owner how much they were using? ultimaedizione.eu/costantin...

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100 mg 2x day, twice per week is the consensus here. The article seems to suggest 10mg per kg.

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Can I add that I wd choose whole food vit C, like acerola powder or Camu Camu powder.

Also I take Magnesium Malate, and about to start magnesium threonate. I also have Epsom baths, interspersed with magnesium chloride baths. Epsom baths detox the body mag chloride puts magnesium into the body.

Hope this helps

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When taking any magnesium supplement internally -- be sure to include citrus: orange juice, mandarins, grapefruit, grapefruit juice, (any fresh-squeezed juice is preferred here over pre-packaged or concentrate) tangerines, navels, etc., in conjunction, so magnesium malate is absorbed properly. Otherwise the body sloughs it off. Good luck!

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How does magnesium help halt or reverse pd progression?

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well all I know is most Americans are notoriously deficient in magnesium, potassium, selenium and the like -- there is a long list of outward (and inside the body) symptoms resulting from magnesium deficiency (as well as the others mentioned) that often imitate some illness precursors if the lack of it, is well - quite serious!

An increase in magnesium, whether ancient, or malate is better than none over all.

Stearate is added by many vitamin supplementation manufacturers as a binder - it is a weak, inexpensive 'low octane' form of magnesium, and really doesn't do what the better varieties can over time.

Hope this helps!

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Great list. Might prove pricey to do them all though but we're worth it as the advert says.

Another one for you - Trazadone. I have trouble sleeping, or rather staying asleep, and felt I hadn't had a good nights sleep for 3 or 4 years - long before diagnosis. Mentioned to my PD nurse who recently prescribed a new medicine for sleep - or rather a very old one repurposed.

She had also that week been reading the research into Trazadone and PD and couldn't see the harm given it has so few side effects and is already used for insomnia (off label) but could potentially stop my condition from getting worse.

First week I took half a 150mg tablet just before bed (recommended to). Didn't help me sleep and just left me groggy.

Second week I took the full tablet. Knocked me out (especially after wine) and kept me asleep all night. Woke up, slightly bleary eyed but feeling refreshed - and almost symptom free (FYI, most people don't guess I am a PwP as I'm generally still well and capable enough to hide my issues).

This lasted for about 2 weeks in total before fading off a bit. It no longer knocks me out (unless after wine) but I still sleep the whole night through although not as deeply as at first. I will wake if my children disturb me which I prefer.

I don't feel as refreshed or well as I did the first 2 weeks but it is still a vast improvement on before I was on it. Whether the long term effect of stopping the degeneration pans out only time will tell but the sleep benefits alone have been worth it.

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Wine is a good theraputic. Must be the resveratrol, plus it relaxes us a bit. I just drink a small glass once or twice a week and i always feel better the next day. Alcohol usually amplifies the effect of medications, especially sleep meds. Personally, i have more trouble staying awake than falling asleep. I recommend you try a session with a hypnotist. I promise you, it helps!

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Most excellent summary.

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We're counting on you. Worthwhile protocol.

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How is this working for you? Thanks

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quite well! not perfect, but I have profound improvements in many areas. Its been about 7 months since I started Mannitol and Whey Protein Isolate. My research is still ongoing, and I think I can do even better! For example, I am studying Dr Marty Hinz's amino acid protocol, and I tried altering my mucuna and NAC dose, adding tyrosine and 5-htp, for a week, and I felt better than I have in years. Enough energy to go to Daytona Lagoon water park and chase my kids up infinite amounts of stairs and slide down towering water slides. And still not feel like crap the next day. I am telling you this because a year ago, I could not even come close to doing this, I was a wreck. All I could do was the lazy river. And even that wiped me out.

in 2 weeks, I am going to meet with a new Dr 2 hours from me, who was recommended by Dr Hinz's research company to me. Hoping to start the amino acid protocol in a proper fashion. I promise I will keep everybody updated on how that works out. I have the highest hopes.

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I am very interested

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Thank you Mary

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I had never heard of Dr Hinz will look into it. Thank you for sharing your journey.

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dont know if you got my smoothie recipe. papaya, kiwi, pineapple, kale, organic green juice (or green tea base) hemp seeds or flax seeds, avocado, berries etc. and a drained can of cooked lima or broad beans. makes 3 servings. I also eat 1/3 c of beans with my meals. helps with tremors.

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Islandhappy

Do you take any meds?

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Not yet. Started one macula in am with other supplements. Really boosted energy and mood. Taking extra Lima beans as it helps with tremor plus cbd/thc for tremor. I use Now brand 15% macula to start, as it agrees with me I will up dosage to 2/day hoping to relieve tremor.

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UPDATE: I believe this is all working in my favor. Compared to when I started this post 5 months ago, I now have the energy to make it through a 10 to 12 hr day of work with only a 1/2 hr break for lunch. No resting hand tremors, only intention tremors. Leg tremors much milder and less frequent, only when Im anxious. Dramatic reduction in anxiety. Dramatic reduction in brain fog. Improvement in sexual functions. No more anhedonia or apathy. And I can smell stuff.

Still having some musculoskeletal issues such as back and leg pains, but this is exacerbated by lumbar spinal stenosis and degenerative disk / joint disease. Still a little slow in my movements. And my handwriting is still a wreck. Everything is worse in the mornings and improves as the day moves on, with symptoms most mild in the evenings.

Just wanted to give everyone a sign of hope! We'll stick to the plan!

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Excellent news.

Interesting that you improve during the day. I am much better early on.

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My supplement list looks quite similar. Trying to decide whether powdered mucuna works better than caps. Take with nac, c, 2x dy. No st johns wort. Plus cbd oil a few times a wk. And wild oat extract called Dopa Mind

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I heard powdered mucuna is more economical and more potent. I still do capsules for the ease of use and convenience. I put away my st John's wort, no longer need it. But i heard somewhere that it helps regrow nerves. Will look into dopa mind!

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I still am not sure about cap vs powder. I buy the powder from bulk supplements and take in am with hot grn. Tea plus na carnosine, tumeric,mannitol and a bit of pepper. I usually take cap in afternoon for convenience. Using 15% now brand. Plus a bunch of other amino acids etc

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Hey bass, I’m on about 75% of the same. Look up serrapeptase. Never got Hinz to work great for me… But onward!

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Hey bass, I’m on about 75% of the same. Look up serrapeptase. Never got Hinz to work great for me… But onward!

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Update 2/19/2018. Leg tremors long gone! Handwriting improving.

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I'm so pleased for you - I so admire the thought and effort you've put into all of this. I have a close relative who was for many years told she had Parkinsons but now we have a different diagnosis, but I'm sure that it's not that either. Possibly dystonia. I'm wondering if this same regimen would help? Keep going, you're doing great.

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Good news indeed.

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Well done. I wish I could avail Dr. Hinz protocol but I am living in country from where it difficult to meet him. Please add red light therapy also to your regimen

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My Dr mentioned the red lights. will look into it

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Been getting acupuncture. The dr uses red lights while the needles are in me.

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Have you felt some improvement after starting acupuncture?

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not really. Paid in advance for 2 more visits, then I will report when its all done. So far, not really helpful.

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Would you post when (what times during the day) you take these? I just read in a different post that B1 interferes with carbidopa absorption. I would imagine that many of these supplements should be taken with or without others for maximum benefit. Thank you

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Amino acids at 12, 4 and 8 pm. . B1 at breakfast and lunch. Isradapine at 6 am and 9 pm. Everything else first thing in the am

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It's B6 that interferes with carbidopa, not B1.

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Today i skipped taking vit d, resveratrol, egcg, taurine, b complex, creatine, co q10 with pqq, whey protein isolate and my groovy smoothie. I felt like i was dragging my ass all day. Wish i didn't have to take so many dang supplements!

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I don't take as many as you, but sometimes I just don't want to take them.

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OK, let me guess. You are a problem solver and not a rules follower. Did I call it correct? I say go for it. If we step back, a little, we will see that, for most doctors, they have no choice but to follow the tested and proven treatment plan. They have to be rules followers. That brings us back to you, bassospades. If anyone is going to explore and test different regimes, looking for improvement in the way you feel and hence how you live your life, who is the most likely person that might make that happen?

All the best to you, please keep us posted and, perhaps, motivated.

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You nailed it 100% thank you.

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Are you still following this plan?

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yes, I am. I have edited the original post in this topic often, as I occasionally tweak things to fine tune. Currently my regimen looks like this:

Dr Marty Hinz Amino Acid Protocol (L-Dopa, 5HTP, Cysteine and cofactors)

EGCG

Dr Costantini Thiamine Protocol

B complex, Vit D3 and C

Fish oil DHA

Turmeric - curcumin

CoQ10 with PQQ

Undenatured Grass Fed Whey Protein Isolate (powdered drink)

Creatine

Mannitol

Low dose lithium (took me from brain for to household Jeopardy champion!)

Intermittent fasting

stick to a Keto - paleo - organic diet as best as I can

Workouts at gym 2x week. All I have time for otherwise Id do more.

I no longer see a hypnotist or chiropractor. i no longer take Taurine, and when my bottle of resveratrol runs out I think Im going to eliminate that too. So many supplements, I want to cut back. Now that Im feeling better than I have in 5 years, I think I can do that. No Rx meds either. Dont need them.

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Thanks. My husband is struggling with fatigue and terrible lack of motivation. He struggles with his hands stopping working but other than that has no mobility or tremor issues. He is already taking lots of different supplements but not everything on your list. Not sure which to cut and which to add! He sees a specialist for the first time in 2 days so is not on any official drug plan yet.

He takes natural multi with folate and enzymes (enzymedica), b12 methyl version, codliver oil, vitamin D, magnesium, tmg, b3 riboside (Niagen) just started, CoQ10 just started, B1, probiotic, turmeric high strength, vitamin C, teaspoon of cider vinegar in the morning, Black seed oil, and is on doxycycline and mirtazipine from Doctor. We are doing swimming, walking, cross trainer, qigong, big lsvt exercise, 7 useful finger exercises for Parkinson’s. Our diet is now gluten free and lots of fresh Veges, coconut oil and olive oil, no sugar, not much meat. Beans, lentils etc so I don’t think that is the problem.

What is the best thing you have found for fatigue?

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This all looks good, well mostly. For fatigue the number one best thing i tried is undenatured grass fed whey protein isolate 30g a day. And vitamin b1 in the form of thiamine hcl. Lots of it. 3000mg per day.

For apathy and lack of motivation, something i had really bad but was able to overcome, i take 5htp which is a precursor of serotonin and part of my Amino acid protocol. Is he interested in reviewing this website and all the good postings? I found it extraordinarily helpful.

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Hi, thanks. You say mostly- is there anything you would recommend against on my list?

No he is not interested in anything unfortunately but is happy for me to read up and try things on him. His apathy wins unfortunately. I am finding it interesting though and read it every day. I think otherwise he would curl up in the bedroom and sleep forever.

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Hi again! What is the concentration of your low dose lithium and what form is it in? And is that concentration just the lithium or the whole molecule?

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Lithium orotate. 10mg. 4x week. I started at 20mg / day for 2 weeks, then 10mg/ day for a few months. I recommend the above dosing as a loading dose and my current one as a maintenance dose. See how much sharper you get!

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Thanks! It is confusing as some brands include the weight of the whole compound and others just the Li I think. Presumably the 20 mg is just the Li and when they talk about higher doses in some papers it is the whole molecule?

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Mmmm. Dr won’t prescribe Lithium and vitacost won’t ship it to nz. Apparently it has to be prescribed by a psychiatrist here.

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Try a local vitamin shop

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No lithium in anything I can find here. It appears to be totally banned except by prescription. The dr said he won’t prescribe it as it can have serious side effects.

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Sorry to hear.

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Try mineral water

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Great idea thanks, I will see if I can find one here that has it. Hopefully that’s not banned too!

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Ps and where do you source these things from? We are in New Zealand so I am not sure if they are all possible to get here.

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For me, All from amazon, Walmart or vitacost.

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Can you please tell me the brand of whey? And where that was from? Amazon doesn’t ship here. Thanks.

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Immunocal platinum is the best but also the most expensive. I use promix. Go to a health food store or gnc or vitamin shoppe and ask for undenatured grass fed whey protein isolate

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^ x2

Just found this thread, and following!

Thank you Bassofspades!

Btw, are you a bassist?

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YES! I am , the baddest bassist in the land!

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Bass

Are you taking Isradipine? If yes,Do you have high blood pressure or taking it for the PD?

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No. I took it for a year. stopped because of possible link to certain guy problems. I did not have high bp, just took it out of desperation to slow the progression. But thanks to aminos and b1 no longer need it.

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Many thanks Bass

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Thanks for posting, Bass

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Have you investigated glycine as a possible supplement? I have been reading a bit about methylation and glutathione with glycine being a good thing to take as a building block for glutathione. It can be added to the diet easily and cheaply in the form of gelatine which can be added into any gravies and sauces. I wonder if it would be helpful. Have you heard anything on it?

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Haven't heard that but incidentally, there's 600mg in each serving of my whey protein isolate !

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Gelatine is one of the helpful ingredients in bone broth which is supposed to be the way previous generations cooked. Most Asian cultures still have their broths alongside their meals. I read the short book The mother of all antioxidants , how the health gurus are misleading you and what you should know about glutathione which is interesting. And gelatine being a food is quite easy to add into things without feeling you are taking another pill. I think you need grams rather than mg of glycine per day but it is a common ingredient in a lot of foods. draxe.com/gelatin/.

I have also been reading a bit about the balance of copper zinc and iron and how too much vitamin c can overload the brain with iron. And then again other articles say more vitamin c is better. PD patients tend to have too much iron in the brain and not enough copper apparently. I started another thread on copper with some link if you are interested. You have probably read it all already though but I am just new to it and finding it fascinating!

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I eat bone broth all the time. Great when doing intermittent fasting. I also did read you post on copper. Intriguing!

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b of s, I think your last post where you describe your level of symptoms was 8 months ago.

If I missed a more recent description, please direct me to it, otherwise would you please update your description of how your protocol is working now? It looks like you've been diminishing or reversing your symptoms. Is that continuing? Do you feel you're close to the symptom-free?

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Thanks for asking! Im not exactly symptom free but im better in many ways since i started my action plan a year ago. Most dramatically are my anxiety is gone, anhedonia and apathy all gone. Energy level and stamina about doubled. Hand dexterity impoved a great deal but still more room for improvement. I can tie sutures and fishing knots again though. Brain fog is so totally gone, in fact my coworkers are always commenting about how smart i am. This is a great change for me as i felt like i was hopelessly lost in brain fog for years. Muscle aches improved about 50% and shoulder rigidity is gone. I can shoot baskets in rhe garbage cans again! I can walk much easier but still looking to get back to where i can take endless walks again someday. My leg hardly ever shakes. I can smell normally again.

I must add that a few weeks ago i was feeling so good that i took it upon myself to cut my Amino acid protocol dose down by one third. For about 5 days I felt fine but by the end of the week my shaking started to return. It took 2 days to get back on track.

I want to reduce the amount of stuff I take so im going to try dropping resveratrol when i run out. I'll gradually taper off. Im going to cut back my low dose lithium too, to 5mg 4 days a week. Though i do believe that was a major brain fog buster. Cutting back vit D too on days i get lots of sun here in Florida. Creatine only on days i work out. I will not cut my Amino acid protocol or thiamine (3000mg/day). These help the most. Undenatured grass fed whey protein isolate is a staple as well. Egcg green tea extract is a keeper too.

Im curious to try NAD+ to see if i can regrow some length of my dopaminergic neurons. I think im making enough dopamine but its not transmitting through my striatum completely or easily. I read that normal dopamine producing neurons in the midbrain have dendrites that are extremely long. But as the disease develops they whither away.

Still struggling with bradykinesia and sone "guy-problems", which im too young for (49).

Some things i tried that did not help me or didn't make enough difference to make it worth taking were st johns wort, dopa mind oat straw, gabapentin, isradipine, acupuncture, ginko, and most chiropractors. I did have a few chiropractor visits, remotely, that made me feel 100% cured, but those were few and far between. Not consistently at all. Massage therapy helps if you can afford it. I cant. Physical therapy did not help, actually it made me feel worse. Hypnosis might help with anxiety. It was after my first hypnotherapy session that my anxiety left me but i believe the aminos are what keeps it from coming back. I had 3 sessions total but the first did it all. Will stick with organic food as much as possible. This is a palpable difference. Intermittent fasting, which is easier than it sounds. A little coconut oil too but im not sure that's a big deal. I just add to my coffee along with a spoonful of mannitol and heavy cream. Sometimes a pat of kerrygold butter in the coffee to make it 'bulletproof ".

In conclusion, i am better. Not worse and not the same. Better. BETTER!! Thats a victory in the battle but the war is still on. I will continue to tweak things as i see fit and experiment as i learn new things. A great deal of what i learned and has helped me i got from people here at health unlocked. Lets keep sharing and putting our heads together! Its making a difference for you and me!

Thank you!

Bassofspades

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Good for you. You have gotten a lot for your efforts. Congratulations. You’re a model prisoner.

Where in Florida are you? (We winter in Port St. Lucie.)

You said physical therapy made you worse. I’ve never heard that before. (When I work out in the gym, though, it worsens my tremors for a couple hours.)

What you mean by a “remote” chiropractic visit?

I don’t think Isradapine is the kind of drug to make a noticeable difference, just like many of the supplements we take, but the data so far, while not robust, shows that it does slow progression. If I get a 90 day prescription (180 capsules) instead of a 30 day and use a GoodRx coupon at Walmart, it’s $45.

I, too, attribute much of my regimen to what I’ve learned on HealthUnlocked. I’m satisfied that the combined knowledge on this forum is far greater than that of any doctor, and the information provides benefits that last more than a few hours, mostly without side effects.

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Im in Ormond Beach, FL, probably 100 miles North of St Lucie I think.

Physical Therapy - I went first for my Lumbar issues, did the exercises religiously, but did not get better. Then went back in Jan 2018 when my walking got real bad and I had pain in my legs. The exercises made the pain worse, but I stuck with i t thinking it would get better, but it didnt. What helped me more was Thiamine, both with the lumbar and walking!

Chiropractor story - When I was first diagnosed in late 2013, I went to a chiropractor because the neuro was not going to do anything, and I read a study erinelster.com/articles.asp... that said it would cure me if I got mt neck adjusted and restore the flow of CSF at the level of the Atlas. The doctor examined me and said, "you dont have Parkinsons disease!", then yanked my arm straight down. After that I was TOTALLY FINE for a few WEEKS! Shortly after that I moved from Ohio to Florida, found a Chiropractor that is also a PhD in nutritional medicine and I bet has a PhD in every alternative medicine quackery there is. He did the same arm yank and I was fine again for 2 weeks. Next time he did it, fine for 10 days, and less and less each time after that until it just didnt work any more, I chased that dragon for a few years but never got the result again. Tried 3 other chiropractors and none helped at all. Then I went to a neurologist to see if I just had a pinched nerve in my shoulder. He said, "no its dopaminergic in nature, you DO have PD!"

Isradipine - I dont doubt the studies. I was getting it for $14 for 90 day supply through my wifes insurance. But I had some "guy problems" and that was a known side effect of it. so out it goes!

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Thanks for all the detailed information. You ARE very smart & also inspiring! Have you ever tried Rock Steady Boxing to go along with your protocol?

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Thank you! I looked into RSB and want to do it really bad but its no longer available n my area

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Keep checking the website, affliates are opening quite often. Thanks again for all the info you provide.

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It is very interesting to see this post evolve. B of S I I'm glad you are finding a good regime for you. I too am feeling great. People don't know I have PD because I move normally and I don't look like I have PD for most of the day, I drive the car, go out every day to meetings, social activities or exercise classes. I maintain the family home, shop and cook most of the meals. My tremor is mostly absent, I sleep well and life is good. I was diagnosed in 2008 and have taken meds since then. If you see me shuffling and rigid in the morning before my first meds you wouldn't have any doubt that I still have pd. I am not cured.

I dont take any supplements. I take Levadopa, tolcapone and Pramapexol at 7:30 am 1pm and 6pm and amantadine twice a day. I dont have any levadopa after 6pm unless I am going out late. Yes my meds last 5 hours and sometimes longer. I think this is unusual but as long as I watch when I eat I have very good symptom control. It has taken a long while to get the combination just right but now I think I've hit the jackpot.

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Julie,

I was started on it the same time I started talcopone. (I didn't have any dyskinesia until then). My dyskinesia is mild, my facial contortions amuse my children and I have become clumsy and can sway a bit. The dosage is up to 3 day, I take 2, one with my 7am dose and next with my midday dose. I am more of a 'mover' after my last meds as I don't have amantadine with my last dose but it doesn't matter as I am at home.

I think it helps calm my tremor too, smooths our my meds and gives me a boost in mood.

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Thank you for the information. I have fairly severe dyskinesia and the Amantadine seems to be taking the edge off, but the instructions are "twice daily" so I've been playing with timing. You confirmed what I was thinking about taking them both earlier in the day.

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Forgot to explain the timing, I was told that Amantadine can interfere with sleep so thats why I take it early rather than later but it doesnt seem to be an issue for everyone. Unfortunately it didnt improve my short term memory, maybe the opposite. Will be interested in what you find. Good luck

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Hi guys. Sorry, but it seems youre getting off topic. could you please take it to private messages? Thanks my friends!

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Opps apologies

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