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BREAKING NEWS FROM PARKINSON'S FOUNDATION

A MyParkinsonsTeam Member asked a question 💭
Carrollton, TX

August 1, 2016

National Parkinson Foundation (NPF) and the Parkinson’s Disease Foundation (PDF) Complete Merger to Form the Parkinson’s Foundation.

We are thrilled to share with you the news that National Parkinson Foundation (NPF) and the Parkinson's Disease Foundation (PDF) have finalized our merger. Moving forward, we will operate as the Parkinson's Foundation with offices in New York City and Miami. While we have already begun integrating our programs and operations, each division will… read more

August 1, 2016
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Answer Summary

Members responded with cautious optimism to the merger announcement between the National Parkinson Foundation and Parkinson's Disease... Read more

Members responded with cautious optimism to the merger announcement between the National Parkinson Foundation and Parkinson's Disease Foundation, with many expressing hope that combining resources and knowledge could accelerate research toward a cure or treatments to slow disease progression. Several members shared practical experiences with supplements, including detailed discussions of inosine (which one member credited with improving small motor skills like buttoning), nutritional L-dopa, vitamin B complex, vitamin D, and curcumin, though another member shared research suggesting inosine has not yet been proven effective as a neuroprotective agent. A recurring theme was gratitude for staying informed, continued hope despite uncertainty, and the belief that pooling expertise and funding through collaboration could lead to meaningful breakthroughs even if a cure might not arrive in their lifetime.

A MyParkinsonsTeam Member

I keep getting mail from the Parkinson's Foundation asking me to send money. I started writing back asking them for help paying for my meds.

August 1, 2016
A MyParkinsonsTeam Member

This merger can and will be great!!!!

August 6, 2016
A MyParkinsonsTeam Member

Now perhaps they can do clinical studies on Parkinson's treatments that are large enough to release to the public. Sterling

August 1, 2016
A MyParkinsonsTeam Member

What's Hot in PD? PLEASE Check http://www.parkinson.org/find-help/blogs/whats-...

Should I take Inosine to Raise my Uric Acid Levels and Treat my Parkinson’s Disease?

The last 20 years Parkinson’s disease researchers have sought to identify a compound that could potentially slow disease progression. One candidate has been inosine, a drug that elevates blood uric acid levels. Uric acid elevation has been associated with a lower risk of Parkinson’s disease, but also with a higher risk of the development of kidney stones and gout.

Should you take inosine to raise your uric acid level if you have Parkinson’s disease? We do not recommend that you use inosine for your Parkinson’s disease. Most of the available data examined the risk of development of Parkinson’s disease, and not actually people with a diagnosis of Parkinson’s disease.

Additionally, many potentially disease modifying compounds for Parkinson’s disease have been shown to be ineffective, and the current data only revealed that inosine was reasonably safe, and that it gets to the brain. Finally, inosine has not to date been shown to have a meaningful symptomatic benefit.

Though the results of the current study are promising, we are still a ways away from declaring inosine as an effective neuroprotective agent for early stage Parkinson’s disease patients.

October 11, 2016
A MyParkinsonsTeam Member

@A MyParkinsonsTeam Member. There are other more natural forms of l-dopa. Example ...there's something called dopa – mind made from wild oats. There is also a particular supplement to be ordered over the counter… Actually I order mine from Swanson's vitamins and it helps with small motor skills. I take them and they have enabled me to do things with my hands more efficiently such as buttoning buttons. The Michael J Fox foundation has tested it clinically up to one step away from getting FDA approval. It is called Inosine. I have been taking it now for going on 2 years and it has truly made a difference for me. Check it out at Swanson's vitamins.com if you're interested. Your doctor will probably not know much if anything about Inosine. Stay in touch. Sterling

October 9, 2016 (edited)

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