parkinson's disease page

[bobkat]

Posting this here only because it is the most active thread.........

Yesterday I learned that my doc - whom I really like, even though he's CW-trained - has Parkinson's Disease. I'm upset. I need info.

So, if anyone can point me toward research, studies, etc. that show diet, nutrition, lifestyle connections to developing the disease, I'd really appreciate it. I know I can't cure him (the ultimate role-reversal) but all things considered, he's been good to me - letting me call the shots regarding my health without any arrogance or mournful sighs - and I just need to understand more.

Thanks.

[Dragonfly]

Vitamin D deficiency linked to Parkinson’s disease, cognitive decline | Observations, Scientific American Blog Network

There's also more info on the Vitamin D Council site.

[bobkat]

Thank you, Dragonfly. I'll check it out and check back later for anyone else's suggestions.

I'm surprised that this is upsetting me so much. Probably the fact that I have no control over the situation, not exactly my comfort zone.

[Stevenhamley]

Some avenues to look into:
Emily Deans has mentioned brain energetics has something to do with it so ketogenic diet, CoQ10, DHA could help
The specificity on parkisons in that it's only the dopamine area of the brain that doesn't work could suggest it's an autoimmune disease
Some creatine may help

[ottercat]

Terry Wahls recovered from multiple sclerosis eating what looks like a primal diet
Terry Wahls MD | Defeating Progressive Multiple Sclerosis without Drugs | MS Recovery | Food As Medicine

There is a link between low Vitamin D and Parkinson's, but it's not clear if it's part of the cause, etc. I'm sure there's a genetic component to some PD cases, but vitamin D definitely has neuroprotective properties.

[RitaRose]

My dad had it for 17 years, which is a really long time. Most people only last about 15 years or less before they pass. Sorry to hear about your doc.

Honestly, I wouldn't wish it on my worst enemy. Everyone knows about the shaking, but that's only part. I can't remember the correct term for it, but there's also something where you'll be walking and still have the forward momentum but your leg just won't come out, so you fall a lot. There's also dementia the last few years, and I think that's probably the worst part.

Unfortunately, I haven't heard of any definitive "cure" for Parkinsons. I think part of what helped my dad was staying physically active for as long as possible. Trying to keep a sense of humor about the whole thing helps too - i'm remembering my dad trying to carve the Thanksgiving turkey one year, coming at the bird with a big carving knife that was nearly flying out of his hand, and my ex deciding this was HIS year to carve. And there was the time he was in a pub, saw another man shaking and decided he would talk to him and put him at ease. Except the guy admitted he didn't have Parkinson's, he had the DTs.

I wish I could say it was all going to be rainbows and sunshine, but it isn't. It's hard. Really hard. Best thing you can do is be there for him and don't let "Parkinson's victim" become his identity. Make sure he's still a human, not a patient, and that you stay his friend when it gets rough.

ETA: My parents definitely had a CW diet consisting of "healthy whole grains" and low fat food since probably the 1980s. How much influence did that have on his disease? No clue. But it wouldn't surprise me if it at least triggered something he might otherwise have been able to fend off.

[Dave Mayo]

Go to youtube and look up "David Perlmutter Parkinson's Glutathione". He is a neuroscientist who has written a couple of books on brain health that are very good. As for natural remedies, cysteine and glycine are the limitings factors for glutathione production but cysteine gets destroyed in the stomach. Supposedly undenatured whey has double bonded cysteine in it that survives the stomach, I have no research info on that but have taken Mercola's power protein which is undenatured. Here is a study on Cysteine/glycine infusion and glutathione levels.

Deficient synthesis of glutathione underlies oxidative stress in aging and can be corrected by dietary cysteine and glycine supplementation

I think the basic connection is that Parkinson's is at least in part due to mitochondrial oxidative stress that eventually exceeds your cell's ability to clean up, for which glutathione is responsible. Increasing glutathione levels should either slow down the damage or stop it.

Here is a better explanation...

FuturePundit: Parkinson's As Mitochondria Removal Disease

[MightyMouse]

I supplement with the stable form of cysteine NAC. I mix it with what I call my Sleepy drink mix. It contains ZMA, C, D, E, Selenium, Taurine, and sometimes Tryptophan.

Nutritional Supplement Facts for NAC

[bobkat]

Thank you all for your insight.

My husband has an appointment with this same doctor tomorrow. Since I can't seem to let this go, here's my plan............

I'm sending a personal note (with my appologies for being so presumptuous) to be handed directly to the doctor, pointing him to the links mentioned in this discussion. I'm not comfortable sending him a link to the actual discussion, bringing up his personal medical issues on a public forum. I'm not ashamed to admit that this whole thing is somewhat self-serving. I'm 63 and I fully expected to "leave" him (by moving away or whatever), not the other way around.

[abexman]

2 links on Glutathione - the latter a study that suggests it is not a benefit to PD.... fwiw....

Glutathione: The Mother of All Antioxidants
Mark Hyman, MD: Glutathione: The Mother of All Antioxidants

From:
http://www.parkinson.org/NationalPar...dcba48b6cb.pdf

What’s Hot in Parkinson’s Disease?
July 2009

Glutathione Fails to Demonstrate Significant Improvement in
Parkinson’s Disease Symptoms in a Recently Published Trial

Michael S. Okun, M.D.
National Medical Director, National Parkinson Foundation

Dr. Robert Hauser and colleagues at the National Parkinson Foundation (NPF)
Center of Excellence at the University of South Florida recently put a highly
controversial drug of interest in Parkinson’s disease to the test. They carefully
performed the first randomized double-blind, placebo-controlled clinical trial of
intravenous glutathione therapy in twenty one Parkinson’s disease patients. The
therapy was well tolerated but there was no significant improvement in any
outcome variable.

The National Parkinson Foundation has for many years received a large number
of information requests on whether intravenous glutathione therapy works in any
positive way for Parkinson’s disease. Glutathione acts as an antioxidant, and
has been found to be reduced in the brains of patients with Parkinson’s disease.
Some doctors have chosen to offer a fee for infusion of glutathione service. It is
important for patients to be aware of several important facts about glutathione
therapy: first, there is a lack of evidence it actually works; second, the therapy
requires an intravenous line which has both short and long term risks; and finally,
insurance does not cover the costs of this therapy.

There is a clear message for patients and families in the Parkinson’s disease
community regarding this drug. At this time there exists no compelling evidence
that intravenous glutathione results in any meaningful clinical improvement in
Parkinson’s disease patients. Patients should beware of any medical practices
offering a fee for glutathione treatment of Parkinson’s disease.

The Hauser article appeared in the journal, Movement Disorders:
Hauser RA, Lyons KE, McClain T, Carter S, Perlmutter D. Mov Disord.
Randomized, double-blind, pilot evaluation of intravenous glutathione in
Parkinson's disease. 2009 May 15;24(7):979-83.

*A letter to the editor of Movement Disorders concerning the appropriate
interpretation of the results for patients has been submitted by Dr.’s Jankovic
(Baylor), Lang (Toronto Western), and Okun (University of Florida)