Is it OK to take Mucuna ALONG WITH Sinemet? - Cure Parkinson's

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Is it OK to take Mucuna ALONG WITH Sinemet?

rsacdoolittle profile image
45 Replies

Must my dad back off/down Carbidopa-Levodopa in order to use the Mucuna Pruriens I ordered for him and am reordering since it does help sometimes? Will switching from 15% to 20% help? Will switching to powder help? Is there a better brand? He is NOT on Azilect. Is there another natural substance to accompany the Mucuna? I am concerned if one can overdose on Dopamine by using the plant-based AND prescription, and Dad's Neurologist doesn't want to discuss Mucuna dosing.. or Mucuna at all. (Wish could find a more positive, open-minded Dr in our area (TN) but that's under a separate post.) Thanks Again! Thanking God for some better days! Sandra4Dad

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Don_oregon_duck profile image
Don_oregon_duck

I was taking mucuna before I started taking Siniment. My Neuro told me not to change anything. He understood what mucuna is. Six months later I saw him for a check up, he said now that I am on Siniment, and can handle it, I could cut way back on the mucuna as he felt I did not need it anymore.

I use the mucuna between Siniment doses, when I have a let down, it picks me right up.

ruthgt profile image
ruthgt in reply toDon_oregon_duck

why did you live mucuna and take sinimat . I take mucuna for a year allready .Had to increase to 6 capsules

HealthSeeker7 profile image
HealthSeeker7 in reply toDon_oregon_duck

We found that though Sinimet was effective in the early days of my husband taking it, it gradually lost effectiveness over the years. It also was not a healthy thing to take because it is synthetic, not a natural substance. (No one ever got healthy from taking man-made drugs.) After taking Sinimet for about 10 years (mostly as Stalevo actually, which contains Sinemet), it had lost most of its effectiveness, taking at least 30-60 minutes to start working, but sometimes not at all. And it had taken its toll on his vitality.

When he started taking Mucuna about a year ago, he swapped out doses of Stalevo for up to 1 Tablespoon of pure Mucuna powder mixed in pure water. The Mucuna took effect in only 10-15 minutes, kept him 'on' longer, and made him feel better. Not only did it help lift his mood, but he visibly became stronger and healthier looking. It is after all a bean that contains nutrients as well as natural L-Dopa. The body recognises Mucuna as food and readily absorbs it.

I wish we had known about Mucuna from the start and had only taken this as a treatment for his PD. We have not yet found a harmful dose of Mucuna - he now takes up to 8 Tablespoons of pure Mucuna powder a day. According to natural health expert David Wolfe, it is almost impossible to overdose on it, although I would always advise caution when taking it or increasing the dose. Little and gradually is best.

The only down side to Mucuna for us personally is that we have to buy it ourselves, where the British National Health Service supply all the Parkinson's drugs for free. But my husband's health and well being are far more important than money.

pdkid profile image
pdkid in reply toHealthSeeker7

Hi, i know this post is a few years old now but this sounds like the position my dad is currently in. He recently changed his sinemet dose from 3 hours to every 2.5 hours, but that means his eating schedule is all messed up. I'm wondering how this is going and how you scheduled eating, etc. Im assuming mucuna also interferes with protein?

Thanks so much

HealthSeeker7 profile image
HealthSeeker7 in reply topdkid

Hi pdkid, Mucuna is still working for my husband, keeping his movement loose - i.e. no rigidity - and still making him feel well, though his walking has slowed considerably recently. We assume this is due to the progression of his PD, nothing to do with the Mucuna, as he was diagnosed around 16 years ago. He is still on the same schedule of taking Mucuna about every 3 hours - with or without food (rarely a problem with his diet) - and he has actually managed to reduce the amount of Gabapentin he was taking (for leg cramps caused by the Stalevo) by half. He still only takes 2 Stalevo a day - usually on an empty stomach. We usually only see interference with the absorption of Mucuna when he has animal protein, so he is basically vegan - only having cheese or other dairy occasionally in the evening. He never eats meat or eggs. Being vegan is so much easier these days with vegan options sprouting up almost everywhere.

pdkid profile image
pdkid in reply toHealthSeeker7

Hi Healthseeker, wow thank you so much for your response, so greatly appreciated...! We are just testing mucuna out today for the first time, and since western neurologists avoid any talk of natural remedies, we are sort of in the dark about how to start incorporating it into his regime.

We might just test a nighttime dose to start.

What time of day does your partner take Stalevo? The morning and mid-day?

Thank you sooo much

HealthSeeker7 profile image
HealthSeeker7 in reply topdkid

He takes Stalevo upon rising (along with his first dose of Mucuna) and again around 3 pm. The only reason he takes Stalevo (which contains levodopa, carbidopa and entacapone) is for the carbidopa, which helps the natural levodopa in the Mucuna cross the blood brain barrier.

He would rather not have to take the synthetic levodopa in the Stalevo because it causes side effects, which for him is leg cramp-like pain. He only experiences that side effect on the two occasions a day when he takes Stalevo. Mucuna never causes him any pain. If we could get carbidopa on its own, he would give up Stalevo in a flash.

We too were in the dark about how to start with Mucuna. The very first time we experimented with it - in the early years of his PD diagnosis - we tried a night time dose, but it was a disaster. He slept OK but twitched and jumped about in his sleep so much all night that I was kept awake. That made us give up the Mucuna until we could find more information online. (No doctor or specialist we talked to would even entertain the notion of a natural PD medication, despite Ayurvedic doctors using Mucuna to treat PD for hundreds of years.)

I have enormous faith that Nature has a natural cure or treatment for almost everything, so I persevered. I was hoping to find someone who had experience with Mucuna. It took three years before I'd learned enough to risk trying it again. The thing that convinced me Mucuna would not hurt my husband was a rat study that showed effectiveness with no side effects whatsoever, even at higher doses. That made sense to me since Mucuna is a bean, a source of natural nutrients with no known toxins, so why wouldn't the body just absorb those natural nutrients like any other food source.

At that time we tried my husband on a quarter teaspoon of Mucuna during the afternoon when the Stalevo wore off early. When that dose of Mucuna didn't seem to help we increased the dose to half a teaspoon. It kicked in very quickly but wore off after only 10 or 15 minutes. We kept increasing the dose until we found that 1 tablespoon of Mucuna would kick in quickly and keep him moving for at least 3 hours.

We charted everything we did for many weeks - what medicine (natural and synthetic) he took at what time, when the medicine took effect, when it wore off, and even what foods he'd eaten on days when his medication didn't seem to work as well.

We soon realized the Mucuna was far more reliable than the Stalevo for kicking in quickly and lasting the full 3 hours (Mucuna became effective after only 5 to 15 mins, Stalevo 30 mins to not at all) so we gradually replaced doses of Stalevo with just Mucuna starting with the second dose of the day and working towards every other dose, then just Mucuna every three hours.

When he stopped Stalevo altogether, he found that by early afternoon each Mucuna dose seemed to be wearing off too soon. When he added back one Stalevo in the morning, the Mucuna stayed really effective until around 3 or 4 pm. That's when he also added a second Stalevo, which kept the Mucuna effective until bedtime. We've worked out that it is the carbidopa in the Stalevo that helps the natural levodopa in Mucuna keep working.

He never takes Mucuna at bedtime after our first experience, so you might want to rethink that timing for your dad.

I am happy to respond to anyone who'd like to know our experience with Mucuna. I would like to be the person with experience that I wish we'd found when my husband was first diagnosed and we were looking for a harmless natural treatment for PD. I know everyone may be different, and it can take a lot of courage to ignore people (including doctors) who dismiss or try to scare you off using anything alternative to synthetic pharmaceuticals. We would like to offer reassurance that Mucuna is not harmful- even at the higher doses my husband takes - and offer hope that it may offer huge benefits as a nutri-ceutical for the long term health and mobility of people with Parkinson's, without the harmful side effects of unnatural petrochemicals used in pharmaceuticals. We think Mucuna is one of Nature's many gifts, to be cherished and used with gratitude.

pdkid profile image
pdkid in reply toHealthSeeker7

Wow HealthSeeker, that is incredible. Thank you so much for sharing your experience with us, really, really helpful in giving us some guidance on how to proceed. Today is day 2 on trying mucuna, so we'll see what happens.

Just for clarification, your partner takes his stalevo once in the morning when he wakes up, and then on his 5th dose of mucuna in the afternoon?

Also, wondering which brand you get and from where? We are concerned about quality and consistency.

Does he just mix it in with water and deal with the taste?

Last, one of my father's many issues at the moment is waking up in the middle of the night to use the toilet but he is sooo stiff and experiencing freezing. Is this anything your partner deals with? My dad wants to test mucuna at this hour, hoping it will kick in quickly so that he can be mobile.

Also, since we are on the topic, Im curious what other natural supplements your partner takes for his pd... Thank you sooo much for all your helpful insights!! Really appreciated

HealthSeeker7 profile image
HealthSeeker7 in reply topdkid

My husband takes his first dose of Mucuna along with Stalevo upon rising, but he takes the second dose of Stalevo mid afternoon, regardless of whether his next dose of Mucuna is due or not.

We get our Mucuna from Detox Trading here in the UK. They have consistent quality and lower prices than most. To be honest, we had never found any difference in the quality of different brands of Mucuna until recently. We bought some 'Mucuna' powder that was cream coloured instead of grey, but it was completely ineffective and actually made my husband feel nauseous. So I would recommend only ever buying the light grey powder you get from ground raw Mucuna beans.

Yes my husband just mixes the Mucuna with a little pure water and drinks it, but he doesn't mind the taste. He said it sometimes even tastes a little sweet. I've heard it mixes well with chocolate, so it might be worth experimenting with a mix of chocolate powder and Mucuna.

My husband doesn't take Mucuna at night, believing it is good to take a daily break from it, though I don't know why your father couldn't experiment with taking it at night. My husband also struggles to move during the night. He used to get up to use the toilet or a urinal, but he eventually swallowed his pride and resorted to wearing incontinence pants at night so he no longer has to get up. In the morning he struggles to get out of bed, but is helped by a couple of rails and bars fitted to the side and foot of the bed that he can grab. He also now sleeps with his head and shoulders raised up on an adjustable back rest to make it easier to reach the bar that holds the duvet off his feet.

We are currently experimenting with high dose vitamin B1 and Mannitol but I can't give any conclusive feedback yet. Nothing has been as dramatically effective for him as Mucuna.

I hope this helps.

pdkid profile image
pdkid in reply toHealthSeeker7

Thank you so much HealthSeeker, this is all very helpful and appreciated. My dad has started taking Mucuna between his sinemet doses and it has alleviated his freezing episodes. He has also noticed way less dyskinesia when he is on mucuna. Its unbelievable how more relaxed he is it. He has been relying on sinemet for 12 years, so its a slow process to replace the sinemet with mucuna. Was thinking recently about B12 for him too. Thank you so much HealthSeeker!!!

pdkid profile image
pdkid in reply toHealthSeeker7

Well, its been about a week and we are still experimenting what schedule and dosage works for my dad. Most of the day mucuna is keeping him from having off periods and freezing, which is AMAZING. We are lucky that his neurologist is "not opposed to it" and "not opposed to experimenting". He had adverse reactions to entacapone in the past (which is in stalevo), so unfortunately, the time release quality doesnt work for him. So we have been trying to figure out 1. what timing of sinemet works, 2. what timing of 1 tablespoon of mucuna works 3. how this fits in with this eating (he feels too full after his tablespoon of mucuna, which he consumes with a bit of pineapple juice.)

So far he went from needing to take 2.5 pills of sinemet every 2.5hours (and experiencing freezing before and after doses, so not even experiencing an on period for very long), to currently 2 pills of sinemet every 3hours, with 1 tablespoon of mucuna in between. He tried taking 2 pills of sinemet WITH 1 tablespoon of mucuna every 3 hours but could feel a bit of wearing off just before it was time for his next dose. So as of today, he is taking 2 pills of sinemet every 3hours, and 1 tablespoon of mucuna after each dose of sinemet. We are going to see if we can extend this by 15 minutes, and then by 30 minutes, by upping his dose of mucuna by a teaspoon.

The day he had no freezing at all, he was taking 2.5 sinemet pills every 3hours and 15 minutes, and 1 tablespoon of mucuna an hour and 45 minutes after his sinemet dose. Even though this schedule worked, we are experimenting with having him decrease his sinemet doses.

My dad is a carnivore, so he has been consuming his meat at night, and minimally during the day. Sometimes it works, and sometimes it doesn't. I think its just baby steps for him (and all of us) right now.

Though the mucuna makes him feel nauseas sometimes, overall, we are all pleased that taking mucuna is way more easy on his body and mind, and allows him to avoid freezing episodes most of the day.

We will report once we find a schedule that consistently works for him. Hope all is well over there on the other side of the pond.

HormosiraBanksii profile image
HormosiraBanksii in reply toHealthSeeker7

Hi, when you say "pure mucuna" what do you mean? Eg, that it's 100% mucuna with no fillers? The highest level of levodopa I have heard of in a powder is 98%, and most powders contain much less than that. Thanks…

HealthSeeker7 profile image
HealthSeeker7 in reply toHormosiraBanksii

By "pure" I mean just the pure mucuna beans ground into a fine powder. Not otherwise processed, heated, added to or altered in any way. Just the beans as nature intended them, except ground up like flour.

Sandmanliz profile image
Sandmanliz in reply toHealthSeeker7

Thank you so much! I had not thought of multiple dosing and being more forgiving with food! I just put it in my smoothy in the am.

Bailey_Texas profile image
Bailey_Texas

if Mucuna Pruriens helps why not just increase Carbidopa-Levodopa. I take as much Carbidopa-Levodopa as i can without major side effects.

rsacdoolittle profile image
rsacdoolittle in reply toBailey_Texas

Baily I think thats a good question. I need to ask how much Sinemet he is on and at next appt we can ask Dr about increasing it. Concerned for long term like everyone else is, and hear that Mucuna doesn't have the negative longer term effects? His appts are every 6 months...

park_bear profile image
park_bear in reply torsacdoolittle

The idea the C/L causes negative long term effects has been debunked by a recent study cited and discussed here:

healthunlocked.com/parkinso...

Mucuna is basically levodopa in herbal form. If adding it to an existing regimen it may be appropriate to reduce the C/L.

rsacdoolittle profile image
rsacdoolittle in reply topark_bear

Thank you and look forward to reading this.

penney-lane profile image
penney-lane in reply topark_bear

park-bear, I love reading your comments and generally agree, however I have 3 stress fractures in my foot because of the cramping episodes on 6 years of levodopa/carbidopa. The side effects of L/C over time has given me diskinesia and distontia. I am trying to incorporate mucuna now which has reduced this to 80% however I have not found the sweet spot yet. I am also trying B1 therapy. I am so confused about all of this... it just seems that we are all guinea pigs and trying to work it out for ourselves. I wish this wasn't so, but I have little confidence with the neurologists in Australia at this time.

park_bear profile image
park_bear in reply topenney-lane

Upon rereading my prior comment I realize I did not do a proper job of communicating what the study actually found. What the study did find was that the arrival of levodopa-induced dyskinesia was dependent upon the duration of disease rather than duration of levodopa therapy. It was not a whitewash of levodopa which my comment seemed to imply. So thank you for the correction.

Levodopa induced dystonia is also a real thing that has been acknowledged in the medical literature. Nonetheless, neurologists seem to be in denial of it. I've written about that here: healthunlocked.com/cure-par...

Using entacapone plus an MAO-B inhibitor has helped me to make the most of my levodopa and keep my dosage low.

stevie3 profile image
stevie3

I found powder more effective - that's just my own experience. I use Zandopa

Hikoi profile image
Hikoi

You show great concern for your father but I do worry about changing drugs based on discussion here. We don't know what meds your father is currently taking and how much how often, these all affect how they work. I think I read your father was on Azilect but he isn't now? Azilect can make carb/lev work better so when he stopped it did you notice a difference? He may need more carb / lev now especially as he has tremors and gets anxious, both of which happen to me several times a day when my meds wear off and I need another dose. The best way forward I have found is keeping a diary and looking for patterns.

rsacdoolittle profile image
rsacdoolittle in reply toHikoi

Hikoi, thank you for your concern. I get on here and explore and ask questions because my parents do not have internet or even know how to use a computer. They are intelligent, but older and not into tech things. That being said, if I don't read these things and ask questions online, then the absolute only help he will get is seeing his Dr. every 6 months. They know nothing about Parkinson's and seem to have no way of finding out more. I just feel really sorry for them. They seem very grateful that I read and learn about PD. It is through reading here that I discovered Mucuna Pruriens and it has been one of the few things that helps his shaking slow down for awhile, at least sometimes. So he appreciates that I order it online for him. I go to Dad's appts with him and mom now, but they are few and far between, and he has never been helped much by any of the meds. His first neurologist told him that his PD is one that does not respond to any traditional drugs and that he had nothing else he could do except to recommend him to Vanderbilt Univ. Hospital where there are movement specialists. So far, they have not gone there, although he may be considering it now. I would never pressure him! He ended up changing neurologists, to see if another might be more helpful or positive or have other ideas, but again, he has only progressed without the normal pattern of being able to tell when your Carb/Leva "kicks in"/have "on" periods. My father has not ever really felt it helping him. A year or so ago?...(approx) the neuro wanted to put him on an antidepressant that hopefully would help some aspect of the PD, but in order to do that, he had to come off the Azilect. What Daddy said he found was that there was no difference being off the Azilect as being on it, so when he told the Dr. this, the Dr. kept him off of the Azilect. It has been over 10 years I believe since his diagnosis and he has progressed tremendously without a break or relief. I could well be wasting my time here.

Hikoi profile image
Hikoi in reply torsacdoolittle

Your interest in helping your dad by finding out as much as you can is very supportive for him and your mum.. I hope you don't ever stop asking questions. That's the easy part unfortunately, knowing what to do next is the hard part. PD is a progressive disease and it is very difficult to watch your father Inevitably get worse rather than better. It is sad that he can feel so isolated in this, are there any support groups or exercise groups in your area which he could attend. Apathy is one of the most difficult things to deal with so he may need your support and encouragement to go to classes. I know I plan to do lots of things and by the end of the week I can find I've just thought about them but never done anything. Apathy may also be stopping your father from going to Vanderbilt for another opinion. Sometimes I really appreciate my husband organising things that I want to do because I will never get around to them . Could that be true of your dad?

I notice he got relief from mucuna which its levadopa so why not from carb/lev I wonder? Keep searching and questioning. Don't ever give up.

rsacdoolittle profile image
rsacdoolittle in reply toHikoi

He may not be getting enough carb/lev? I plan to post how much of what he takes asap. Will be spending day there in a day or 2 so will post after that.

rsacdoolittle profile image
rsacdoolittle in reply toHikoi

I really don't know about the groups. We live on the mtn. and our town is very small. A group would be a good thing.

rsacdoolittle profile image
rsacdoolittle in reply toHikoi

Yes, I think it could be true.

mymomhaspd profile image
mymomhaspd in reply torsacdoolittle

What about exercise - does your dad exercise at all ? My mom has had PD for 10 years and while it has progressed , I know that when she was with me for a few years I did not see the progression of PD that much because of exercise, which included walking , stretching and massages.

Then she went down because she had multiple falls and back issues - and the biggest thing they did was decrease her mobility which affected her PD negatively .

rsacdoolittle profile image
rsacdoolittle in reply tomymomhaspd

His exercise is gardening and working in the yard, mowing and sometimes even push mowing and working on equipment in his garage etc. He is fairly active, but the PD lately has totally zapped his energy and he is sooo tired. Like with your mother, I believe he needs more variety exercise. I believe he does stationery bike some too in his garage. Something to think and pray on...exercise. To encourage more of it.

rsacdoolittle profile image
rsacdoolittle in reply toHikoi

I and my brother are trying to get them internet and a computer and teach them to use the thing. Maybe then he can at least not feel so alone, seeing such sites as these.

rsacdoolittle profile image
rsacdoolittle in reply toHikoi

Thanks for suggesting the diary and patterning.

rsacdoolittle profile image
rsacdoolittle

After restarting Mucuna capsules, starting and Theonine and _______ a small natural supplement pill for PD pain and stiffness, Dad is finally feeling some better again and was able to go to church Wednesday night, to my mom's delightful surprise!

Kathleen profile image
Kathleen in reply torsacdoolittle

What do you use the all natural for pain and stiffness ,I appreciate your help

mymomhaspd profile image
mymomhaspd in reply toKathleen

Please try Curamed (turmeric) it is pretty good and a natural solution for inflammation and pain.

rsacdoolittle profile image
rsacdoolittle in reply tomymomhaspd

Dear MyMomHasPD, I want you to know I know just how you feel...my dad has PD. It really hurts, doesn't it?! We just want to make it go away again. Instead we are given the blessing of being able to love our parent and care for them and spend however much time we can with them, while still carrying on with our own life and family life. My dad lives about 10 min. away, so I can see him and mom, well, I visit at least 2 days a week and talk with them a couple more and occasionally they come over to our house too. I think that just being there, however that "looks" for each of us who has a parent or relative with PD, is the best thing of all we can "do" besides pray for them daily. I think it is comforting to just know "I do not have to walk this pathway alone. I have a child and others who love me and are with me through the good and the bad". SIDE NOTE: DAD HAS TROUBLE WITH GOUT FLARE UPS AND TAKES TURMERIC/CHERRY CONCENTRATE FOR THAT TOO. MAYBE IT'LL ALSO HELP HIS PAIN AND STIFFNESS.

Rosabellazita profile image
Rosabellazita in reply tomymomhaspd

Which turmic do you purchase what amount do you take and how often

mymomhaspd profile image
mymomhaspd in reply toRosabellazita

Buy Curamed - start off at a lower strength and then go up

rsacdoolittle profile image
rsacdoolittle in reply toKathleen

Hi Kathleen, in addition to the Curamed (turmeric) suggestion by MyMomHasPD, I actually do plan to raid my dad's cabinet soon and write down what all he takes. So sorry I cannot remember. God bless you and relieve your pain and stiffness, Sandra

Farooqji profile image
Farooqji in reply torsacdoolittle

how is your dad doing now

rsacdoolittle profile image
rsacdoolittle in reply toFarooqji

Farooqji, I realize it's been a while :), but I wanted to respond anyway. My dad has had PD for around 15 years now and he is in need to some type of RELIEF from symptoms, at least SOMETIMES! He has had no episodes of Gout in a few years, so quit taking Turmeric, as far as I know. I shakes a lot and some days/times he shakes hard on BOTH SIDES now and his MOUTH/JAW. Given he has severe pain from inoperable back injury and nerve pain, the shaking IS NOT HELPING AT ALL. Perhaps it's time to ask him to go to Vanderbilt for the Deep Brain Surgery. I know it would be awfully scary a step for him and Mom! We are looking at RELIEF now and TN now legally has THC Delta-8 as an option. We are experimenting with it and looking forward to full medicinal legalization of the Marijuana THC/CBD in Tennessee. Maybe some relief there. In the meantime, we experiment with Delta 8 and encouraging him to increase the Zandopa. Thank you for your concern. Please give your own update here for us as well? Thank you! God's blessings, Sandra

in reply torsacdoolittle

You say your dad has been with PD for 10 years. How old is your dad, and how many capsules is he taking in a day? Do you happen to know the brand? I ask as we just purchased some but have not started them yet.

rsacdoolittle profile image
rsacdoolittle in reply to

It looks like I never responded, dear Hidden. Sorry about that oversight. Hard to believe 5 years have passed. Dad is taking something every 2 hrs now, alternating between Sinemet and ZANDOPA Mucuna Powder (mixed in water but only 1 tsp not Tbs.) He alternates til bedtime, making sure the last dose is Sinemet so that the glass of water drank late with ZANDOPA doesn't keep him going to the bathroom so much. WE ARE THINKING ON SWITCHING FROM ZANDOPA TO PURE CRUSHED MUCUNA BEAN. But first he is waiting to get his first prescription of NUPLAZID since unplanned surgery after a fall gardening brought on psychosis. The episodes come and go but are terrible. When he can "just be Dad" he is still the kind and positive hero with a great sense of humor despite the long hard battle with PD. (He always is our hero!!!) Awaiting team of doc/pharmacy/Nuplazid manufacturing company to win the battle with insurance, so the med will cost very little. I hope you are well. Blessings, Sandra

Rosabellazita profile image
Rosabellazita

The neurologist never want to discuss anything natural!!

JHLambert profile image
JHLambert

Thanks for this article, and from my personal experience with Parkinson’s Disease, the Zandu product taking Sinemet regular 25/100 and CR 50/200. I think I can shed some light on some of the questions asked within this post.

First, I want to say hello to everyone. My name is John Lambert, I’m a 59 year old white male and kind of a big person at 6’4” and 350 lbs. I was diagnosed with Parkinson’s in August of 2008. By April of 2013 I was taking enough Sinemet 25/100 that my new Neuro at Baptist Hospital in Winston-Salem, NC was concerned about the frequency of my dosage increases and the overall amount I was consuming. I was dosing 17 to 19 times a day just to get through the day. At that time I was teaching high school in technology in an Alternative School Environment. My wife of 41 years, the only adult woman (besides my mother) I’ve ever kissed, is a rather small person at 5’2 and about 140 lbs.

Now, you must understand that as of April 2013, I’ve had bilateral (that’s 2) deep brain stimulators (one on each side of my head, and yes this means I’ve had 2 brain surgeries) installed and I’ve already spoken to my Neuro about having them swapped out for the newer enhanced models that self-program and don’t need a Neuro except to the initial setup and then run an annual maintenance program. Oh, and the new enhanced model doesn’t use up batteries nearly as fast, by auto adjusting itself down during non-peak periods. At present the battery in my left chest has been replaced twice and I’ve yet to have the one in my right chest replaced. My sweet wife puts it this way, “I’m not sure that I could do it, but I’m sure glad you let Haq and Laxton install the two DBS units.” This takes care of all tremors and from 0 to about 30% of other symptoms.

I began using Mucuna Pruriens, but it was NOT the Zandu brand in 2010. At the time it did little for the Parkinson’s. So I began to experiment with the MP brands doing my own documentation of each evaluation of product. I purchased small amounts of MP enough to do a 30 day evaluation. I purchased each product in powder format and used 500 mg lab spoons / scoops to administer it before investing time and money in making capsules. I took my Sinemet religiously. I evaluated each brand of MP product to see how well they could creat of a bridge between on and off periods, it’s taste, the convenience of use, how quickly I could tell it was working and how long I could feel that it seemed to last. I evaluated 5 brands, 1 was prepackaged from a retail vitamin supplier, 3 were through Amazon, 1 was procured via mail order directly from the supplier. The last one I tested was the Zandu / Zandopa product. To date it has been the only one worth the money and time spent to evaluate.

Now, stress, the things you put yourself through, or the things others put you through, works against the individual and is a very different animal for those with PD. I’ve argued with family members that made my head hurt, or I became dizzy, or I broke down crying all from the stressors affecting me at the particular time. The mental part of PD is worse in my opinion than the physical effects. The DBS, as good as it is, and it is very good as a treatment, is powerless against stress, as is the Sinemet, as is the Zandu / Zandopa or any other drug that man invents... is all powerless against the stressors of our mind. Oh, and if you attempt to numb the mind into submission, it won’t work.

You’ve got to get a handle on the things that stress you out. Control the stress, and you can deal with PD. Heck, it might even go into remission. I’ve heard that Yoga and the Martial Art of Ti-Chi is very good for PD but with no experience there, I can’t offer advise. I try to take over my mind with reading, expanding my mind by learning new things, entertaining great discussion, etc. But, you’ve got to get a handle on the stress.

Be very skeptical of those that tell you that they’re self cured of their PD and they go on to tell you that some combination of martial arts and ancient yoga secrets that they reveal did it for them. They are the exception, not the rule. Parkinson’s, aka the shaking palsy, aka the shakes or tremors, has plagued mankind for well over 4000 years. The Zandu / Zandopa product follows both Indian and Chinese Ayurvedic Medicine technics that are about 4000 years old too. With it and the right diet, ie Vegan, you can become about as close to normal as is possible. My recommendation is to follow Dr. Michale Greger, MD at the nutritionfacts.org website. He’s a very real diet guru that knows his stuff about nutrition, digestion, developing and maintaining great nutrition for almost all life’s situations that are thrown at us.

Now, here’s how I’m currently taking MP with Sinemet CR 50/200. First, I personally use the Zandu / Zandopa brand product. I get it through their online store at Amazon.com and if you can take the Zandu / Zandopa brand product by itself and don’t really need the Sinemet regular or CR, then by all means try it. I did that for about 6 months, I felt fine, During that 6 months I didn’t experience any dyskinesia, no sickness, but I could also tell the disease was advancing in the following ways. I’ve already told everyone about me having the 2 - DBS Surgeries. The second one was actually installed about 16 months after the first, and I was taking the MP at that time. During this time, about Sept of 2014, my lower jaw would tremor and eventually my teeth began to chatter. The 2nd DBS unit’s got that well controlled now.

I’m still taking the MP. You might be wondering by now why is he’s (I’m) taking the MP, the Sinemet CR, has two DBS units installed with plans to have them upgraded to the newer technology ASAP... And, oh I’ll tell you now this isn’t all of it either. In the meantime I’ve also started using the Neupro 4mg (Rotigotine) patch. Here’s why: Parkinson’s is progressive, it’s always, constantly trying to consume you, and all this represents is the tool box that I’ve assembled to help me deal with it. I’m to the point now that should I need something to increase because of how I feel, I increase the MP capsules that my wife and I fill ourselves. It’s the only thing I feel safe about increasing and I’m never disappointed. I’m far from normal too. There is no magic bullet or pill to make you feel normal. I also take Zoloft for depression. For 5 years I took Wellbutrin and that stuff, I know, will eventually kill you. I felt so bad physically while I was taking it. So, with all I’m taking and trying to feel normal, and I desperately want to feel normal, have you ever wondered what snaps in a person today to cause them to feel like they need to hurt others? It’s the forte’ of drugs that we willingly take to feel normal. Can you imagine how it would make you feel, a person suddenly getting the diagnosis they have PD? I understand the causation of why people feel they should go ballistic. We need science to work on cures for these diseases we contract. Sometimes I even still dream about being a part of a clinical trial that is the cure I need.

More to come...

rsacdoolittle profile image
rsacdoolittle

JHLambert, thank you for your reply here. It's been a while since it was posted :), but I still wanted to respond and say "Thanks!" Reading this has made one thing in particular stand out to me: I need to ask my father to make a list of things that most stress him, so he can really think this through, without spur of the moment answering. OH, actually 2 things. How much Zandopa do you take and how often? I BELIEVE MY DAD NEEDS TO SIGNIFICANTLY INCREASE HIS ZANDOPA.

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