Many thanks to this invaluable community! We (pwp & caregiver) have gained much insight from the folks here over the last few years, especially the courage to experiment with different approaches. Otherwise, our pwp would likely still be highly overmedicated, under the advice of his neurologist. He would likely still be suffering from hallucinations, intense dyskinesia, inability to communicate, sharp cognitive decline and generally, feeling pretty hopeless. From this forum we've learned about B1 and mucuna, and while these haven't been the perfect solution to the myriad of symptoms and side effects (from levodopa) he experiences, it is clear they offer some improvement, especially in that he doesn't have to keep increasing c/l to the point of no return.
We managed, over the course of a year, to switch almost entirely off of c/l to mucuna. He used to take 16 Rytary (23.75/95) and now is down to 2. From this forum, we've also learned that he could combine the Nutravita 100% levodopa with Barlow's 40% brown mucuna for the maximum effectiveness of both.
Another amazing thing we learned here, from a post by GaryTorch (healthunlocked.com/parkinso..., the fact that delaying the daily start of medication meant the first half of the day could be really good! We've done this gradually, delaying the start of medication by an hour, every couple of weeks. At this point, he doesn't take any Parkinson's medication until 2:30 p.m., and we intend to continue this process as long as possible.
We'd like to know if there is anyone out there in the late stages of PD who has successfully phased out mucuna entirely. We are also wondering if there are any pwps who have followed John Pepper's example by switching to Azilect. In our case, this requires first phasing out Rytary, and then phasing out duloxetine before starting on Azilect due to contraindication of Azilect with duloxetine.
Apologies for not being more active contributors to this forum; we intend to continue participating as the med schedule evolves for whatever benefit it may provide to others.
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Dupree
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Fantastic commitment to a seemingly better life for your PWP!
I’m not going to be much help at this point. I am reducing my Nutrivita ldopa by alternating in some Mucuna 7% which has not been processed, offering further benefits. Banyan Botanical supplies this. Mostly because recently I feel a little overdosed just using Nutrivita ldopa, and if I take nothing there’s only a mild difference in my symptoms. For instance it’s dinner time and I’ve taken nothing today. I just returned from a long walk with my 2 year old lab, she’s strong. So I’m feeling less may be more for me lately. We’ll see.
I didn’t get into the fast walking but I’m a firm believer that my dedication to Dr Joe Dispenza meditation the last few years has been instrumental in symptom reduction. It’s a slow process but has worked.
I’d love to read the Gary Torch post, hopefully it can get reposted as a link.
Thank you for responding, Constance! I will look into Dr Joe Dispenza for sure. It's perfect timing for this as we were just saying it would be good to start meditating. Thank you!
Dupree you can watch him on YouTube to get a general idea of his message. I recommend reading “ you are the placebo”. First, then I recommend the on line “ Progressive Workshop” to learn the work. Following that download his meditations to your phone and use the anytime, anywhere!
Well done! I am pleased that others have realised that levodopa is not the way to go, and the object of many neuros appears to be to get us on as larger dose of levodopa as possible.
As we are all different, it is useless comparing anything we take.
We're wondering how you're doing these days. Still feeling the benefits of exercise? Very impressed that you came up with your technique of conscious movement- it's brilliant! Sending good wishes!
Thanks for your kind words and your interest in my health.
I have had a lot of health problems over the past two years, unrelated to Pd, which have prevented me from doing my walking. with the result that my Pd symptoms have got worse. They are nowhere near as bad as they were in 1994 when I started the fast walking.
Over the past 6 weeks, I started to walk 1 kilometre, increasing the distance by half a kilometre every second week. I am now up to 2 kilometres, and my time is 10 and a half minutes per K, which isn't bad for a man of 86. I hope to get back to at least 6 kilometres in an hour, over the next four months.
Wonderful news John, so glad to hear you're still at it! Very impressed. I taped a list of pointers to his walker on conscious walking steps from your book and it seems to be helping him focus. We also watched the video you posted years ago "Mind Over Medication". Gives us much hope, thanks.
Hi Thanks for this We are trying also to come off co beneldopa...we were on 4 x 200mg and now down to 1 to come off all together soon. We are trying atremoplus 10 g. Amazing if you could give us any advice ...what is Mucuna and B1. love to hear more. Anita
Good afternoon, Macuna is a bean which has naturally occuring dopamine. My husband, officially diagnosed in '16, has never used pharmaceuticals. We buy bulk brown macuna powder, from BarlowesHerbalElixirs.com, in the morning (we also bought the capsule maker and empty gel capsules) Barlowes emailed that 1 -size 0 capsule contains 250 mg. of L-dopa) He takes 3 each a.m. He was unable to handle the Nutrivita l-dopa, as it is so much more concentrated (digestion-wise, on an empty stomach). 1/8 t. of the Nutrivita has 500 mg of Ldopa. He takes 1-2 each of the Nutrivita capsules, 11:00 and 4:30
He also takes a capsule of green tea extract about 15 minutes before dosages and then uses green tea to drink along with his capsules. From what I've read, green tea extract acts as a carbidopa-effect. Anyway, it also helps keep the macuna down.
A HUGE thank you to Roy Prop, on this forum, who introduced us to high dosages of B1 with Magnesium L-theronate. There is so much information here and on his facebook page on high dosage B1. As of this week, after 6 months, my husband took a week off, and will start on Monday just taking the B1-magnesium T for just the week days, with weekends off.
Hope this is a little helpful. I look at this forum as my 'educational resources.'
I see you got some good info from Horseriding4. Also wanted to add a very informative mucuna website that I wish I'd seen a year ago: mucunaparkinson.com
GrandNan this is helpful news! Can you tell me if there’s been much progression during the past 16 years. And does your husband regularly see a Doctor.
Hello, he was officially diagnosed in 2016, so it’s just been 4 years. And, after seeing a leading PD neurologist in Knoxville, who only had his script pad ready for 4 meds, he doesn’t see a neurologist regularly.
Following the High dosage B1 protocol, he hasn’t had much progression beyond his hand tremor. He just started feeling like he wasn’t swallowing as he used to, so went to an ENT, who suggested PT for a few simple exercises, which has helped.
He doesn’t walk daily, as others have said to be extremely helpful. . .
Following all of the information from Dr Costantini, through RoyProp , the high dosage B1 / magnesium therapy will stop the progression, and if used early enough, can repair and heal the parts of the brain being ravaged by PD.
Also, on this forum, there is SO much useful information to help us decide how much Macuna he needed to take, since he never took regular meds.
For others, the 99% pure Nutrivita Macuna gave them no digestive problems (vomiting); but for my husband he couldn’t handle it
He does take 1 green tea extract capsule about 15 minutes before any Macuna. Then he swallows the Macuna capsules with regular green tea we have at home.
On this site, and others have mentioned it: macunaparkindons.com , is from Dr Rafael Gonzalez Maldonado - invaluable reading.
Thanks for your input GrandNan! I'm thrilled to hear there's such a thing as a capsule maker. We bought the empty gel caps to try to make our own for outings and in case he is hospitalized, but couldn't manage to get the right quantity in the capsule. I'll look for a capsule maker. Appreciated!
Hello! I could not imagine trying to fill it without this inexpensive little device: Cap 'M Quik on HerbAffair.com for just $26.00. I filled about 200 size 0 capsules & cleaned up in about 40 minutes. We learned: put the capsule maker on a small tray. Have 1 side bowl to collect the tops, and then a colander - after they're capped, instead of trying to lift each one out, one at a time....., today, I dumped the tray with the completed capsules into my colander (over the same tray), which collected the extra powder and then could easily dump the capsules into a brown jar.
Thank you for your interest. I began PD treatment on 0.5mg of Azilect 4 years ago. I have since required an increase to 1mg po daily. My neurologist wanted me to start on Sinemet which I unfortunately did. Within three days I was needing assistance to get out of bed and feeling as if I would die soon. I am back on 1mg of Azilect daily and feeling good.
On a side note. I am also on Duloxetine 60mg po daily. I have been on it for 9 years and have felt so bad when attempting to wean off that I decided to stay on the medication.
Thanks Yardmom7. I'm sorry to hear the Duloxetine is so hard to phase out. I'm also surprised that you can take both Duloxetine and Azilect at the same time, as our neurologist said they are contraindicated together. Sounds like you're better off without Sinemet though and that could be a good thing!
Hi Dupree, I’ve been on Ragalin for 7 years + ever since I was first diagnosed. I had some hallucinations early on. Not sure what caused not had any for years.
All I can really say is I’m doing very well. Nororolagist Saying it’s mild pd.
please fell free to contact me anytime.
Very sorry I don’t seem to know very much. I do lots sport table tennis, skipping, cycling. Luckily I am able. I do suffer from leg spasms regularly. Very poor sleep patterns at times. Constipation is also a problem which needs managing. Regards
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