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Parkinson's "sucks"

Erniediaz1018 profile image
36 Replies

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Erniediaz1018 profile image
Erniediaz1018
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36 Replies

I feel bad for him.

His foundation would not even reply to Dr Costantini's inquiries to see if they would consider funding research into thiamine and PD. It's too bad since they are probably one of the few organizations that could potentially do that. Even though he is 25 years in, it could still possibly help him with some of his symptoms.

Art

Erniediaz1018 profile image
Erniediaz1018 in reply to

Interesting that's the first thought that came to mind how'd they'd be a good source for recognition of Dr C's research. But then on second thought they're too tied into the system. You're right too bad for him 😞.

Harleybob08 profile image
Harleybob08

My Amino Acid doc went to see the Fox people, and was treated with derision. So sad, they seem to be stuck in the box.

Thank goodness for sites like this.

Peter

Erniediaz1018 profile image
Erniediaz1018 in reply to Harleybob08

That's right Peter, thank Goodness.

MBAnderson profile image
MBAnderson

He gave us "suckitude." I kinda like it, but is that a noun or a verb used with an adjective?

Erniediaz1018 profile image
Erniediaz1018 in reply to MBAnderson

😁

bassofspades profile image
bassofspades

Towards the fact that the mjf foundation doesnt have any interest in thiamine therapy or Amino acid therapy, this tells us that they dont have the patient's best interest at heart but are probably in it for the money. Just like billions of dollars and decades of research and the American cancer society never has a cure. They'd all be out of a job. Am i just another mad conspiracy theorist or what? Any thoughts?

Erniediaz1018 profile image
Erniediaz1018 in reply to bassofspades

You're 1000% right. I know first hand what paper pushing jobs are, having been a bookkeeper for Columbia Universities NCCP(National Center for Children in Poverty) under the school of public health. They do research on child poverty within the US. I was responsible for keeping the books on $4.1 million spent yearly by 55 or so employees. Anyone that lives in the US should know this prestigious organization is spending much more money than this which was over 15 years ago now to identify and promote strategies that combat the number of children living in poverty within the US, but I don't think anyone had ever even heard of this until my present mention. So bassofspades my thoughts on this are that you are not a mad conspiracy theorist and the MJF foundation is nothing but a paper pushing (useless information technology now) foundation and they have become experts at keeping IT alive. Isn't ironic that "it" also stands for information technology. They are useless, they will never do anything to help him with the disease of Parkinson's.

Sunnysky profile image
Sunnysky in reply to bassofspades

Hi was wondering about any research done by MJFox foundation on Thiamine had not seen any . Where did you get your info if it's as you post it does seem like they are not genuinely seeking a cure but that seems odd because surely Michael J a sufferer himself would be keeping a close eye

On the foundation that bears his name

Keep positive

Sunnysky

Erniediaz1018 profile image
Erniediaz1018 in reply to Sunnysky

As the large amount of money that is funding that institution almost $1 billion is not coming from him (Michael) he had no say in the research conducted. Money talks. The governing committee for that institution governs where the money is used.

bassofspades profile image
bassofspades in reply to Sunnysky

Sunnysky i get my info from the good people that post on this website. Heresay, probably, but i have gotten more useful tips here than mjf's website!

in reply to bassofspades

bassofspades,

I am always leery of organizations that get started with the supposed intent of eradicating a disease, any disease, because success means they will cease to exist as they will no longer be needed! In other words, a cure would put them out of business and I don't think they want that at all. I was trying to think of any disease based health organization that has actually found the cure for whatever disease they are working to end and well, I am still trying to find one!

One organization that I feel exemplifies this fairly well is the Muscular Dystrophy Association. I remember their annual Jerry Lewis Telethons dating back to 1966 that would raise millions of dollars each year on top of their normal funding and donations through the rest of the year. Those telethons continued from 1966 ~ 2011 or 45 years! Needless to say they are no where close to finding a cure or for that matter a really good treatment plan! Each of those Labor Day Weekend events generated millions of dollars in donations above and beyond their other donations throughout the year. They are currently burning through well over $110,000,000 a year! I think that if you start a company and allow yourself 40 years+ and billions of dollars in research money to reach your goal and don't make it in that time frame, you probably are in the wrong line of work! Btw, in 2014, the CEO's salary was $550,000! I don't think that leaves much incentive to find a cure or for that matter, even a very good treatment that can halt or reverse the disease as such a good treatment may have a negative impact on donations. I think that when people perceive that a disease can be very well treated with the available meds, they are not as anxious to donate as they might be for a disease which generally has an outcome of death.

Many of these types of organizations are in the non-profit category so they are tax exempt. Granted, tax exempt status may be the norm , but the executives are often compensated quite generously. Any major corporation that has a CEO who does not produce significant results after 3 or 4 years would normally be out of a job, but sometimes it seems that some of these organizations are really in the business of "keeping the doors open"!

Omg, bass, I'm a conspiracy theorist too!!!

Art

Erniediaz1018 profile image
Erniediaz1018 in reply to

😁 oh man you made us all conspiracy theorist!!!

bassofspades profile image
bassofspades in reply to

Ack! Lets go watch Ancient Aliens! Its a CONSPIRACY!!

MBAnderson profile image
MBAnderson in reply to

"I think that if you start a company and allow yourself 40 years+ and billions of dollars in research money to reach your goal and don't make it in that time frame, you probably are in the wrong line of work."

You think?

in reply to MBAnderson

Yes, my point exactly! I get that it is a business and needs to run as such, but any business that does not produce good results after just three to five years will usually be out of business. These agencies seem to be rewarded for poor results! How can anyone who doesn't work for that agency feel that this is a good thing!?!?!?

Art

Despe profile image
Despe in reply to bassofspades

We conquered the moon, but not cancer, AD or PD! Humor me.

bassofspades profile image
bassofspades in reply to Despe

AD? I thought mega doses of coconut oil was the cure!

Erniediaz1018 profile image
Erniediaz1018 in reply to bassofspades

PWP have to be careful with AD. The thing with natural cures which we have a difficult time acknowledging is that it takes time, sometimes six months before we start seeing results.

bassofspades profile image
bassofspades in reply to Erniediaz1018

Just fyi i was kidding about coconut oil. That being said, i take a big dollop in my coffee every morning anyway!

Despe profile image
Despe in reply to Erniediaz1018

"PWP have to be careful with AD."

What do you mean, are PWP prone to AD??

Erniediaz1018 profile image
Erniediaz1018 in reply to Despe

Yes, we are prone to AD and dementia. 😐

in reply to Erniediaz1018

Ah yes, the disease that just keeps giving!

Art

Gioc profile image
Gioc in reply to

more sad speeches ... do we have any?

someone assured me that I could not become more demented ... many years ago :-)

in reply to Gioc

I think they may have been mistaken! :-)

Gioc profile image
Gioc in reply to

in a dual world ... absolute are unattainable, so there is always who is worse than me in all senses 😂😂😂

bassofspades profile image
bassofspades in reply to Gioc

Did you mean, "would not become more demented "?? "Could not" implies you are already maxed out on dementia!

Erniediaz1018 profile image
Erniediaz1018 in reply to bassofspades

😂😂

Erniediaz1018 profile image
Erniediaz1018 in reply to

🤣🤣🤣

KERRINGTON profile image
KERRINGTON

Hi ErnieDiaz1018 from NJ ! I'm a jersey girl ...have you come across any doctor, nutritionist, etc that you like ?

Erniediaz1018 profile image
Erniediaz1018 in reply to KERRINGTON

Not really 😞 who I do swear by is my Korean therapist. It’s Edison Rehabilitation, I’ve been visiting there a little bit over six months and they are wonderful. Besides that I’m basically self treated (15 natural herbs 🌿 + MP) and experimented with B1, with good results looking forward to regular mega dosing of B1. Lots of advise and motivational (emotional) support from this forum, especially when you’re feeling funny (like no one can relate). THIS FORUM (YOU ALL) IS THE GREATEST. 🤗🙏🤗

KERRINGTON profile image
KERRINGTON

Do you need a physician referral for Edison Rehab ?

Any herbs for extreme fatigue ? I'm on B1, which helps, but not with fatigue.

I'm on MP whole powder, 1 1/2 gm B1 (started at 4), cur cumin, b 12, b complex,D2 & K, Neuro Magnesium, a bit of mannitol (lowers my bp too much). exercise 30 to 45 min. 3,4 x a week. Healthy vegetarian, recently trying fish, chicken, but

nothing helps my extreme fatigue.

YES ! This is a great site, so happy I joined.

Erniediaz1018 profile image
Erniediaz1018 in reply to KERRINGTON

Depends on your insurance carrier, but most likely referral not necessary. For fatigue gotu kola, ginko biloba, magnesium, maca, ashwagandha, holy basil, astragalus, echinacea. I take these daily in powder form, among a few others. Very difficult to get used to taking every day but the results are miraculous although seeing results took at least three months and I do take breaks for a few days when I feel overwhelmed by taste 😃.

KERRINGTON profile image
KERRINGTON in reply to Erniediaz1018

I've read about all of these. I didn't realize they cd be used together. I guess about 1/8 tsp each ? Thanks

Erniediaz1018 profile image
Erniediaz1018

Yes, I buy in bulk from Ameriherb. They say you're supposed to mix no more than three at a time but I've been mixing all 15. I mix three spoonfuls of each in a container for ease of taking every day.

Gioc profile image
Gioc in reply to Erniediaz1018

Very interesting. Thank you very much! :-)

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