"She wants others to know there are alternatives, like a mucuna/amino acid program, that are far less toxic than pharmaceuticals and allow for healing. There are a few others we know of now who have braved this transition and are also using the same protocol, but there's not much dialogue about it. We welcome that!"

1. there is no evidence sinemet is toxic and absolutely no evidence the neuroassist protocol is safe or effective.
2. almost every time you post here you plug neuroassist.

Thanks Trisha, I looked at the site but it is not much use to me as I am in the UK.

I h ave totally run outt of energy to look for solutions now, being a single parent of twins with a hostile ex has totally drained me. I don't know where to turn. I need looking after, not to be looking after others. I have tried contacting my neuro about starting sinemet but have had no reply. My next appointment is in 3 months. Am in a big black hole.

Trixiedee

Hang in there. I know what it is like to look a little one through this, and the stress that comes with it. Do you have any family or friends nearby who can help out with the kids just an hour or two a day? Just having a little break helps me immensely. I am not in England, but Lindy is...she may know of some resources for you.

Three months is too long. You tried mucuna. Did you try Zandopa? It can be purchased and the base is mucuna but it is pharmaceutical grade. It comes in a sachet and is pre-measured. It may be worth a try.

Also, with the NHS can you bump up your appt. or get into see a regular doctor sooner who may be willing to get you started with Sinemet?

Sorry, I can't be of more help...just I can empathize with you. You're not alone.

Laura

Hey Trixiedee,

I hope you can find a local ally. If you have a good naturopathic clinic or physician or school of naturopathic medicine, I suggest that you post a notice that you'd welcome a conversation with others who are finding their way through Parkinson's or other complex neurological conditions, including Lyme disease which sometimes does mimic Parkinson's. You will find success stories, perhaps some resources that apply to you and, hopefully, you will find some deserved compassionate companionship.

With Jan's experience, we learned that mucuna by itself is inadequate L-dopa support. With the right individualized balance of aminos L-Cysteine, 5HTP and L-Tyrosine, it becomes a viable alternative to Sinemet, at least it is that for Jan and a few others we've encountered. I wouldn't attempt to represent the research behind NeuroAssist, nor should I. My role has been to hack into every lead I could find that might offer Jan a way to heal. I learned about using mucuna and aminos here on this site, and thank all of you intrepid people who are so courageous and determined to be well.

You can look into other approaches to regulating brain function with amino acids, by going to autism sites, also weight loss and depression programs. There's much to find by jumping the boundaries like this. One popular reference is The Mood Cure, by Julia Ross. Her work is instructive, insofar as learning how aminos influence our psychology. This stuff applies to Parkinson's, even if we aren't sure yet how it's going to do it well.

No one should stop taking any pharmaceutical without expert supervision, but it is extremely important for those of you who have not yet started up on them to know that you may have prior options. This is why I leapt into this thread.

All good wishes,
Trisha

how much does ZANDOPA cost in the U.S.?

"You can look into other approaches to regulating brain function with amino acids, by going to autism sites, also weight loss and depression programs. There's much to find by jumping the boundaries like this. One popular reference is The Mood Cure, by Julia Ross. Her work is instructive, insofar as learning how aminos influence our psychology. This stuff applies to Parkinson's, even if we aren't sure yet how it's going to do it well."
so what are you actually suggesting, she experiment or do you have first hand experience that any of your suggested "treatments" help pd??

Even taking "prescribed" medications is experimenting.

This is helpful to those who are at the very point of diagnosis and coming to grips. It's a shame that our national advocacy organizations do not endorse it as a viable treatment option. I wonder why that is?

I appreciate what you are conveying, but frankly, in trying to rebuild a faulty chain of amino acids in the production of dopamine misses the whole point in how many of us got here through differing pathologies in the first place. A person who has a genetic mutation on their Park2 gene might need an entirely different blend than another; genetic testing isn't regularly done that I am aware of, so how do we have a clue? If it were a matter of tweaking these things, I think neurotransmitter balancing would have become a standard treatment approach by now. While I suppose anything is possible, I can't imagine how long it would take to mimic the the delicate biochemical balance that occurs in a healthy brain let alone the PD brain.

With all due respect, this approach appears just as crude as taking Sinemet. It is attempting to replace what is lost, fine. How do you then account for the resulting impact on the other neurotransmitter acetylcholine? Both are responsible for the motor symptoms of PD. With too little dopa, we end up with too much acetylcholine- at least some of us do. Some of us end up losing that too... how does Neuro Assist address this? Other neurotransmitters like Serotonin and Norepinephrine factor in as well.

I think this debate would be great as another thread, but I think to continue here in this vein is wrong given the tone of Trixiedee's posts. She is fed up and seems to need immediate relief. Maybe this could be explored once she feels better, but for now it seems like she needs something that will work...quickly. I could be wrong, but her posts don't exactly cry out that she is in a place right now for experimentation.

Laura

I have only ordered once on line, but I believe it is around $10 USD. It is more readily available in the UK.

I tried it once a few years ago and am thinking of revisiting once I get a new med regime worked out. I know there is concern there may be saccharine or aspartame in the base powder; just a caveat that it is not entirely "natural".

Laura

[QUOTE=Onward;693384]Even taking "prescribed" medications is experimenting.[/Q

nothing stays the same - my diet changes with the seasons - maybe there are some foods that one can take throughout the year but I don't find that to work for me.

having pd has moved me to pay better attention to what is within me.....what compells me - what feels good, what am i hungry for and what doesn't..its a process. I have long been a passionate advocate of the powerful benefit of a good diet but was suprised at the great effect i get from fava beans....somehow providence shined her face on me_maybe it was all the good intentions and efforts to serve others with good nutrition that opened the door that allowed me to receive a little grace myself. who knows

look within -trust your inner prompting - how does one discern relying on the opinions of others? maybe part of the gift of the pd journey gives us the direction to become self-actualized. THE answer is your answer.

"change the way you look at things and the things you look at change" - WD

md