My dad is on a surgery waitlist for DBS here in Canada (probably next year) and we could potentially do FUS in Switzerland... But in the meantime, we have been trying to figure out the best dopamine sources to help him on the daily. Mucuna is much more effective than his Sinemet, which barely works anymore. He is was recently on 1 100/25 Sinemet with 18 grams of mucuna powder. You can imagine that taking this every 2 hours and 45 minutes is a lot on the body, plus creates a loss of appetite for real food.
With Barlowe's (40% extract), in the mix (and less powder) he would experience unbearable sharp pains in his shoulder when his meds wore off.
We tried Dopaboost and its helped him a lot, especially in being able to reduce how much mucuna powder he has to consume. He reduced it by half, I think. (so is taking 1 sinemet, 8grams of mucuna powder amd 2 dopaboost) (i think!)
The Dopaboost has other ingredients in it (pls see attached photo)
QUESTION :
Is taking 2 Dopaboost pills 6 times a day too much? What about 4 Dopaboost 6 times a day?
Im concerned about how much Green tea extract is in there (liver damage?) and if taking too much of the other stuff is inadvisable too...
I know, I just wish his neurologist knew about this stuff...
Thanks for any insight
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pdkid
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I am surprised reading "we could potentially do FUS in Switzerland"
I remember your mentioning Dr J saying his fus surgery not working well for freezing of gate pwp. And I know he has reservations for non tremor pwp like your dad (and me).
I know you wanted to contact him again to ask more questions. So is this potential fus further to more information he gave you?
Hi Parkie, there is no surgery that helps with freezing of gait. Dr J suggested doing LSVT Physiotherapy and doing psycho-emotional work. He said it was ok to check in in 6 months after this. My hope is that my dad can better manage his freezing of gait. Surgery would still help with his rigidity, dystonia, bradykinesia and dyskinesias... And i think overall with taking less medication, sleep, etc.
He's starting the LSVT BIG next week and whether he gets surgery or not, it will still be really helpful for him, so I'm grateful that Dr J recommended it. It's a 4 times a week for a month intensive.
He has been accepted and is waiting for his turn. His neurologist made the referral at the beginning of the year; then he had is initial meeting with the surgeon(s) in August. They said they would call back in three months with an update... which I guess should be soon. In the meantime, we have been corresponding with someone about their DBS experience, as well as watched Dr. Mischley's "Parkinson's School" class about DBS. So now we are better prepared about what to expect, and what questions to ask the surgeons in the next meeting.
Also, Dopaboost has been a regular part of my dad's regime. So far so good.
I am very happy that your dad finally found something that will help. DBS seems to be very helpful for many members. He's very lucky to have your help to sort this all out. Keep us posted!
Thanks all around!! We are a bit nervous about dbs (and still don't fully understand how fus WOULDNT help him), but are really excited about the prospects of this surgery making his life easier. Have you done any surgeries?
I was accepted for PTT procedure in Switzerland in September. I have my surgery appointement next February. I was rejected for dbs here in Canada because the MDS accompanying the neurosurgeon said I might not have pd but rather MSA.
However, if I were you, I would be more curious to know if I really have MSA or PD... Maybe you can present your case to Sonimodul? I encourage you to contact them.
Have you tried mannitol. It's been a life changer for my husband. See research on PD and mannitol on line. Syncolein has a very good video on the research as well. My husband's neurologist was amazed at his improvement and a few days later sent us the latest information on the current trial being done in the US.
My husband has been on it for about 4 months and is still improving.. No apathy, fogginess, dizziness, facial mask reduced.
Mannitol has been used in hospitals for brain injuries and brain surgery since at least the 1950s. ...no more research, as there's no money in it,....sad..better late than never, I guess.
What is the form of mannitol that you use? What is the dosage? Who is the supplier? Is your husband on other medication or supplements? Thank you for your input.
The mannitol we use is Spanish. The brand is Sosa. It is sold here in Australia as an ingredient for pastries etc. it's 100% mannitol (sosa.cat). I sourced it from the wholesaler, who imports European foods and wines. It is very reasonably priced. My husband takes 1tbs. a day in coffee. It's been amazing.
He has some meds, but until the mannitol, nothing's been working for about a year. He takes Madapar, ( levadopa), the Neupro patch, which had stopped working, and more recently Xadago, which helped a little, but still it didn't get him off the bed.
He takes quite a few B vitamins, B1, 6, 9, 12, Zinc, vitamin D, folic acid, folate, magnesium L-threonate, Glutathione reduced. We tried the high dose B1. Maybe I increased it too quickly, but it sent his blood pressure thru the ceiling. He's taking 250mg now. I may try to increase it slowly.
oups, i dont know why i forgot to write back to this! my dad did try mannitol in his coffee but i think with all the other supplements he is taking, he couldn't tell what was effective or not. that's incredible. how does your husband take it? is it still working for him? thanks!
Yes, my husband's still well. He takes the mannitol in iced coffee. Mannitol seems to work particularly well for people with apathy, which he had. He is now getting much more exercise, so he is walking better and his balance is better. He is going to a Chiro, which helps as well. We hope it lasts.
I'm also looking at the red light helmet mentioned on this site and made in Tasmania ( Australia), which is where we are.
Good luck and please keep us informed on how he goes with the DBS. WE'll keep our fingers crossed 👍
That's amazing! I'm glad to hear that he is doing well and that mannitol is still effective for him. We don't have the helmet, but we have an infrared light that my dad uses regularly... with all his supplements, diet adjustments and exercises, its hard to tell what its doing, but as we like to think, every little thing helps! Let us know if you end up getting the helmet. Thanks, I will definitely keep you updated!
Could you please explain the difference between Mannitol and Erythritol? Is there something in mannitol that specifically improves PD issues? Thank you so much.
Mannitol is not just a sweetener. When my husband was in a major hospital here in Australia, I mentioned to his doctor that he was taking it for PD. She told me that they use it for brain injuries. Then, when I mentioned it to our GP, (since retired) he said that when he was doing his training in the 1970s, they used it for brain surgery. It’s never been researched till recently because there’s no money in it. Even then it was very underfunded, certainly not funded by Big Pharma.
Some members have had success with mannitol , others haven’t . Many have trouble with gas. My husband had been taking a medication for reflux before PD, ( probably caused by too many glasses of red😅), so we reintroduced it.
We sourced our mannitol from a wholesale importer. It’s out of Spain. It is imported for chefs cooking diabetic food. It is very cheap, as it’s not being sold as a supplement! I think some members have got it direct from the company in Spain, Sosa.
See my post, which explains what effect it had. Please read it and get back to me if you need to.
When we add up his Dopaboost intake, he is consuming 700 mg every other day of the green tea extract...! I hope this is ok... I guess its within the limits of that link you sent. So far so good though and its been 6 months now. My dad's med schedule is 6 times a day, but when he wakes up in the middle of the night, he takes Dopaboost to help him sleep, bringing it to 7. We alternate days, taking Dopaboost one day then Dopamax the next. It makes it more cost effective for us. We actually have gathered all the ingredients found in dopaboost and have mimicked the doses for Dopamax days. He opens up all the pills anyway and mixes it with other stuff like psyllium and mucuna powder (down to 5.5 grams) and lemon water. Each dose is basically equivalent to 2.5 tablets of Sinemet. Also, it turns out the Barlowe's wasn't causing him the pain, it was the Sinemet!!!
How often does your spouse use Dopaboost? How long have they been taking it for? What is your source for it? So glad to hear that it works great for your spouse too. Thanks Casey!!
Started DopaBoost June 2019. So that’s a year and a half. Been using three capsules a day for the last year. Purchase is via Amazon.
Not too happy with her movement this month: a bit slow. Think we will need to increase the dose. If no improvement may have to put her back on the pharmaceutical, Sinemet. She’s not too happy with the Sinemet talk. But we will see.🌺
... as for your Dad this comment leaves me bewildered ‘takes Dopaboost to help him sleep’. Not that I doubt it, just don’t understand the mechanics of it.
Have you tried Melatonin. It should promote sleep and taken in high enough doses acts as an antioxidant. See this thread initiated by Art
I currently use 10mg sublingual tablets. I can tell the difference when morning comes: when taken I rise completely refreshed. I have no sleep issues, nor do my spouse, but she does not feel the lift in the morning so may need to increase her dose.
I think Art is on to something here. Check it out ✨✌🏾✨
She takes three capsules a day and no other form of levodopa? That's pretty good, quite a low dose. I'm trying to decrease my dad's Sinemet! He takes 5.5 tablets a day on top of everything else. The Dopaboost and raw mucuna powder have been helping a lot though, in decreasing his Sinemet. I understand though, the Sinemet can work like magic.
When did your partner get diagnosed? Its been almost 13 years for my dad, who is now 69.
We are here in Canada, so we don't have access to Dopaboost via Amazon. We are lucky though, that a friend brings a lot over when he visits for work and family.
He takes melatonin every night and it for sure helps him. When he gets up to pee though, even though he is very sleepy, its difficult for him to get back to sleep, mainly because when he lies down, his chest feels really heavy and uncomfortable. We think its related to being off or freezing, so the Dopaboost gives him a shot of levodopa that takes this feeling away, and let's him get back to sleep.
SO relentless! Your partner is lucky to have you! Have you looked into the Hinz protocol at all? I know that some people have mimicked it themselves, while others have used the (pricey) guidance of a clinic. Might be a way to maintain your natural non-pharmaceutical regime. 🙂
Indeed🕴 Felt that I was guided to Hinz as I was already primed from my research to think that other neurotransmitters were as important - serotonin and acetylcholine.
So he gave me permission to use 5HTP to shore up serotonin production. I now use Tryptophan, further up the chain from 5HTP.
And further research allowed me to see that B5 (I use a full B complex each day) plus Phosphatidylcholine should generate acetylcholine. I found this particularly useful for balance problems.
In essence Hinz made me see that ‘man should not live by Dopa alone’. A GABA supplement is up next, to deal with anxiety.
Will try to keep it natural for as long as I can. But I expect to mix natural and pharmaceutical therapies over time🌺
I don't know why I forgot to reply...! Thanks for the insight! Is Acetylcholine the same as choline? My dad's naturopath started him on choline last year but maybe going through B5 is better or different?
Also, do you have any idea if one shouldn't take tryptophan while on sinemet?
So great to hear of others doing a lot of intensive research, finding what works for them (and sharing!) Thanks!
We use Levadopa to supplement for Dopamine shortfalls in PD. But this is not enough. That’s why your Dad’s naturopath started him on Choline to makeup for the Acetylcholine shortfall. As for me I use phosphatidylcholine and B5 (from a B-Complex pill) to provide supplemental Acetylcholine. I also use CDP-Choline.
See here for a concise discussion on Acetylcholine. (It is not PD specific but you would gain an insight into what your Dad’s naturopath is trying to do.)
And I would absolutely take Tryptophan while on Sinemet i.e:Cardidopa/Levadopa. Cardidopa ties up B6 which is vital to produce Serotonin. The result is depression and gastrointestinal issues. This on top of the issues PD itself creates with regard to serotonin production.
Wiki - ‘Approximately 90% of the human body's total serotonin is located in the enterochromaffin cells in the GI tract, where it regulates intestinal movements’.
Check HU for post on constipation and serotonin reuptake inhibitors. I find the number of post on these issues alarming, to say nothing about the lack of insight into the underlying problem.
I would suggest 500mg of tryptophan or 50mg/100mg of 5HTP along with 100mg of B6 at night away from the Sinemet dose. But do check with your Dad’s naturopath.
Finally to round off this post there is the need to balance the following two transmitters GABA and Glutamate. But that is a rather long and convoluted story. Not too sure I understand it myself.🌺
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Thanks!
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