Overview of the NIH Conference

[CPT_Helen]

"People living with Parkinson's are the personal experts when it comes to knowing the disease..." Read Linda Morgan's comments on the conference tinyurl.com/obepy5s

[Jash]

Bravo! well said

[PatV]

My neuro had a seminar on this a few years ago .

[Hikoi]

"..... engage and involve people living with Parkinson’s as true collaborators and partners within each step of the research decision-making – from determining priorities,

to the development of study design and protocols, to dissemination of results."

It has begun but so much more to do. One day this may be reality, thanks Linda.

[JohnPepper]

Hi CPT_Helen

I keep asking myself, "Why doesn't anybody, who is genuinely looking for a cure for Pd, offer to investigate my Pd case?" I am willing to submit myself to any tests and/or studies. I have managed to reverse many of my symptoms. Surely someone is interested to find out why!

John

[fwes]

John Pepper, Lessee,

Can some outfit get a patent and make big bucks on walking?

Can some young researcher get tenure and an international reputation by watching sick people walk?

Can some government agency get a larger appropriation from congress by scorning new-tech and promoting walking?

Are young healthy people willing to walk 1/2 hour a day, even though they know its good for them?

And you propose that sick people do What?????

More likely that you will be committed than followed.

In another post I asked: What do you think constitutes an effective treatment? I did not ask anyone to name one, to choose one, or to defend one. After 2 months, there are only 11 replies, and only one-half of these confront the issue of the post. Virtually everyone reading and writing in these posts is undergoing a life-changing treatment and is either already experiencing debilitating decline or cna expect to. Am I to believe that few have thought about what kind of treatment and results would be satisfactory? I expected something like:

"It would make me feel better and I would be willing to engage for as long as is required."

John Pepper: Could it be that most would rather be sick than take a walk?

Satwar: Could it be that most would rather be sick than change their diet?

Linda Morgan: Do you propose that if someone is an expert on feeling bad, it follows that they are also an expert on how to feel good?

[BillDavid in reply to fwes]

From a Statistical perspective.......most research involving Patients looks at those with typical experiences of symptoms such as Mobility Disabilities.... none the less there are other individual Patients who experience for one reason or an other is atypical , with less severe experience of these symptoms, such as John Pepper for example. Statistically these individuals are known as "Outliers". Seems to me that these individuals, individually, should be a focus. Why are they atypical?. Learnings could provides opportunities for all of us Patients to be like them!