If you felt there was a lack of available info on some area of PD, what would t be?

[Dopadocdotcom]

[Imad]

There are many research papers that suggest that certain antioxidants in diet or supplements may be used to slow down the progress of PD.

However, recent reports submit that taking antioxidants will upset body's natural and sophisticated system that maintains a delicate balance between free radicals and natural antioxidants and dietry antioxidants may be harmful.

I have been taking curcumin, NAC, Alpha lipuic acid and ubiquinol. Should I stop taking them?

[Hikoi]

Genetics 101

As well as interest in responses to the question above, I would love an explanation of genetics in Parkinsons so I can read research articles with some degree of understanding. I have read a little and find things very simplified (some patient information sheets) or very complex. An explanation of terminology would be great beginning.

[pdplan4life]

Patients have long recognised that people living with Parkinsons are different, and that there appear to be subgroups of pwp who have similar symptoms and progression. I would like to see a list and descriptions of the different subgroups that scientists are acknowledging to exist.

[reverett123]

There is a huge amount of data and studies that point to an assortment of causes and influences for PD. Inflammation. Oxidation. Metals. Pesticides. Herbicides. Genetics. Epigenetics. Mitochondrial problems. Stress. GI tract. etc

It could be of great use if there was a place where those of us who comb the literature could post links to relevant published,peer reviewed work in these categories and, most importantly, the links that we see to other categories of data. One of the problems we face is not the lack of info but rather the lack of organization of what we have as it sprawls across the ill defined boundaries between the scientific disciplines.

One example-

A recent paper reported that bacterial overgrowth in the small intestine was much more common in PWP than the general population. Simple enough, right?

But the paper also reported remission of symptoms with the use of antibiotics.

Anecdotes of similar response to antibiotics are common among PWP.

Similar overgrowth can be noted with infection by H pylori.

H pylori infection causes inflammation in the GI tract

That inflammation can lead to "leaky gut" which can lead to autoimmune problems.

H pylori infection also lowers stomach acidity

Which impairs nutrient absorption

Which leads to a whole host of problems....

So I've waltzed across a half-dozen specialties and haven't even had breakfast. Perhaps a wiki?

[shasha in reply to reverett123]

i too would be most interested to find out more of the gut problems as i am convinced that there is a link -- i have diverticulitis - which i think could be a true link with my pd - i dont have the tremor at all - just the usual , falling over and weakness problems

so if you could let me know where i could find out more and what the anti biotic was - that would be wonderful - xxx

[Lindylanka]

I too would like more info on sub-types, there are so many that are emerging, and even ones that have cross-over into other conditions, that it is becoming hard to see PD as anything other than a spectrum or disorders. It would be good to have something like a spectrum scale so that we could see where each of us were! Maybe this is not possible, but on the other hand if it was it might give a new way of looking at PD and evaluating patients.......

[SaraRiggare]

This was an excellent thread that gave a lot of information on issues that PWP find interesting. Several of these are things we hope to address within Parkinson's Movement and it seems we already are getting started

[Lindylanka]

Would like to add that there is a lot of information out there, with no way of being able to filter what is good information and what is not. Sometimes it is not what is available that is the problem, it is when it is available. Most of us have had to go out and educate ourselves, and some of what we find is accurate, some is not........ I would have like to have known more early on, so I could make informed choices.

[paulaw]

cultural diversity. i see mostly caucasians at conferences, online, and in clinical trials. are we going to find a cure with only one race? just think of the sub--types we could come up with in an ethnically balanced study.

[par004]

To be as current as possible about PD I do these

- take my written questions to my neurologist appts and don' t leave until I get answers

-participate in PD clinical trials which gives me access to researchers and other PD patients, both of whom I question freely

- spend time on the web searching for current PD developments

- participate in a beneficial exercise program for PD patients, conducted by a certified PD trainer. (focus is on balance, strength and agility)

- participate in a CHOIR just for PD patients ( singing helps strengthen the voice (conducted by 3-5 university music grad students trained to work with PD)