[DublParked]

My partner's PD started with a tremor about eight years ago. We've avoided agonists due to side effects, using Azilect (rasagiline) to extend the life of dopamine by removing MOA-B which helps to break it down, and the traditional Levodopa/Carbidopa, 25/100, 6x daily at present, with additional carbidopa 25mg taken with each dose because the standard ratio does not supply enough carbidopa in our case to prevent absorption by the body before the levodopa transfers through the blood-brain barrier to the brain where it is needed. Without the extra carbidopa, we were experiencing significant nausea.

Also, we take a final dose before bed of extended release levodopy/carbidopa.

The extra carbidopa not combined with levodopa, BTW, is hugely expensive, even though it has recently gone generic, which must be some kind of a scam, given that the same stuff combined with levodopa is cheap; fortunately, insurance covers this. They seem to be charging patients to avoid nausea - I'm imagining some kind of a dastardly two-level marketing scheme in which those who can afford to pay will have their money extracted while others are subjected to unnecessary suffering. It doesn't make us very trusting of the pharmaceutical industry.

Much of what we have done and are doing is outside pharma. We're taking a variety of supplements for their anti-inflammatory and anti-oxidant effects. This includes curcumin, N-Acetyl-Cysteine (NAC), and a variety of other substances.

For about the last year and a half we've been using low-dose natrexone as a way to calm the autoimmune-driven neuroinflammation that is believed to be at the heart of the PD disease process. It has aided in sleep and it incidentally cleared up some costochondritis (a different autoimmune condition) quite dramatically. The hope is that by reducing inflammation it will slow the disease process.

We are about to try a traditional Chinese medicinal herb, scutellaria baicalensis, which is the only substance we've encountered that reputedly (and according to studies) can actually re-generate neurons in a manner similar to that of BNDF (Brain-Derived Neurotrophic Factor). We found a source in the product Standardized Scute (cannot yet recommend as have not tried it yet).

According to our neurologist (who is quite allopathic and not very involved in the non-pharma aspects of treatment), my partner is doing exceptionally well for someone eight years out from diagnosis. We still go for long walks and also dancing once or twice per week - exercise is very, very helpful - especially the dancing. She's not been driving for the past year because the stress brings on tremors, but it's not due to lack of strength or general capacity.

The main problem we have is that everything takes longer to accomplish. Getting started is slow and execution is also...slow. One might call it, in engineering terms, "graceful degradation." And we are still looking for that silver bullet that might cure the problem, so speak up if you think something might help.

[Lara]

Hello to you and your partner.
Welcome to the Neurotalk Support Groups.

You probably have found it already, but in case you haven't, here is the link to the
Parkinson's Disease Forum

There is a wealth of information posted there and I'm sure you'll be able to share information and support.

If you wish to search any particular keywords you can use the Forum Search Feature -
http://neurotalk.psychcentral.com/search.php

take care.

[kiwi33]

Hi DublParked

Welcome to NeuroTalk.

I have found it a supportive and knowledgeable community and I hope that you will as well.

I hope that Scutellaria baicalensis is of benefit to your partner. She might find the (fairly technical) information about it here helpful; http://examine.com/supplements/Scutellaria+baicalensis/ .

There may be some things there which she could discuss with her neurologist.

All the best.

[Kitt]

Welcome DublParked.