[paula_w]

copied from new book forum
good ideas girija,

to them i am adding these:i can't write longer sentences, have too much to say. so if it sounds bossy i'm sorry. try to focus on the content please.

let's set a deadline for people to sign up to participate directly with Doc John. How about tomorrow? rick's been asking for weeks. sign up tomorrow.

Then we need the entire list from Doc John, but he needs to be pmed for it. We aren't the only thing he does lol. Rick can you get the list after sign up closes? Of course, we aren't going to engrave it in stone that no one else can sign up, but we must get started..

Do we need a mission statement? Can we just dive in and start organizing the outline? Mission statement: write a book about online parkinson's communities or connections and/or progress in online communities since first book by Linda. I liked many of bob's topics, and also like the idea of mapping connections, because that's what this unique community arose from and how it continues to progress - through connections...like dominoes.

Two weeks is too long. Regular readers know about this. IF someone comes along that really wants to contribute, we can be flexible, but i'd like to see this start tomorrow even. We've got the forum. Start now.

Let's write a sticky about the project for general information and for continuing contributors, the need for which we will not be closing for quite some time.

I think we should do both posters and the book. We need core groups for each because multiple posters can be considered. I think the core group for the book should include people who have been here for awhile, but not exclusively old timers. I don't mind being a founding member and will be glad to consult on the book, but would like to focus on the posters first. This will eventually lead to adding them to the book. I would like Rosie, who will be joining, to be on the poster core team because she and I talked for 3 hours tonight about potential topics. She is an informed patient.

Here are potential poster ideas that we discussed for those who may be interested in working on both. These will have deadlines, but are very specific and will have defined tasks. The book will need different people, but we can overlap and all post here.

Parkinson's Research: an analysis and categorization of all research as listed in available databases and by organizations, foundations, NIH, etc. to determine whether they are working primarily on symptoms or neuro protection? This may be extended to other countries if representatives would volunteer globally for their country.

23andMe: an analysis of the effects of patient education and collaboration in the development of and recruitment for the parkinson's genetic analysis study . So far promotion videos and going international have come out of neurotalk. Time for much more to occur. We need global promotion of this study.

Online Forums: Neurotalk and perhaps Braintalk: Similarities discovered among pwp that don't necessarily follow traditional thinking. e.g LDN, curcumin, etc. Rick, how can you not lead this?

So for the book, i lindylanka and sasha come to mind but i don't have the list. i think they should be in the core group for book. any old timers interested? carey - medium timer, peg - need you. any others out there? girija, did you mention stepping back? must you? you are needed but no pressure. linda h will consult and probably get motivated by others' degree of work output and enthusiasm.

ok i am too tired to look up the list, so that is the first order of business IMHO. who is in here? The book should move right along with the posters but may not be finished by wpc.

people will need sponsors to get there. any fundraisers or wealthy contributors? the posters must be presented. this will take hard work by sick people.

what is a poster? scientists have had them at their conferences. they are exactly that - posters, like a large poster you would hang on your wall. They are tacked to display walls and it's like a big science fair. I think patients should make the effort to show something new, even if it doesn't work. It's about discovery and we have time to do the tasks that can be evaluated - any hypotheses? - talking to the globe here.

ok rest of posts will remain in book forum. no lurkers please, if you join, you have to work lol - and regular updates will be posted. limited to patients and caregivers? except docjohn and moderators.

Anne Frobert, i hear you are rewriting your wonderful post in the old forum. i hope you are and appreciate how much work that could be. but it's inspirational. Those in business and doctors don't want to see emotion - it gets in the way. This is too extreme and doesn't work. We need to adjust the expectations to a workable meeting point. The human element will be ignored as long as we are accepting of it.

A colleague pointed somthing out to me. We need to work on the motor symptoms. If they were gone, we'd be fine. Instead we get meds that compound motor symptoms and make us crazy, then we have psychiatric "symptoms". Side effects are being confused with symptoms and called symptoms.

You can make a difference here. Let's start now.

posting to regular forum as information and last call. please remember that i didn't mention other names because i have been at this all night and don't know who was on the editing list. i know vicky has a contribution, but didn't know if she was on the editing list. and others.

second order of business - who wants to work on writing , researching posts and editing, and in the case of the poster work - with researching pd research globally??

tomorrow, monday? the 14th? i hope - deadline to sign up. can't guarantee that everyone will get to write, but need [people to research for writers] - if only a few participate it will go too slowly and possibly die. let's use everybody - assign writers a researcher to help. we move or we fail.

ok i picked myself up and dusted off the gloom and doom. hope others do. it's not easy. these are my suggestions. what are yours?

editing to add: i am not determining who works on what, but responding to girija's suggestions about founding members and selecting core groups. working in pairs could keep all involved, along with editing. these are just suggestions.

best to all,
paula

[indigogo]

A colleague pointed somthing out to me. We need to work on the motor symptoms. If they were gone, we'd be fine. Instead we get meds that compound motor symptoms and make us crazy, then we have psychiatric "symptoms". Side effects are being confused with symptoms and called symptoms."

Paula - this is backward. Our current meds only correct motor symptoms - tremor and rigidity. And the meds cause more motor symptoms - dyskinesias - when taken wrong or too long.

The problem is the exact opposite - all of the other crap we face (especially lack of concentration, motivation, no sleep etc) that keep us from functioning normally and that have been overlooked for years.

Give me a tremor any day - it's all of the other stuff that effects my life - at least for now - but, of course, they will get worse.

They have a fix on the motor skills - that's why they need to find a cure, because the meds now just fix, or mask these symptoms only for a while - they don't stop us from getting worse.

We'll all be a lot better if they focus on determining just exactly what Parkinson's is - and it's not just motor symptoms. It's much more - but what?

[paula_w]

I see what you are saying, but I don't think we have a fix on the motor symptoms, nor do meds correct them. They relieve them, cause addiction to them, and in the end cause just as many problems as the illness. Thinking that we have a fix on motor symptoms, and concentrating on non-motor symptoms, [which means more meds?] ;leaves is with more meds, a new market for pharmas, less effectiveness of the meds so higher doses, and eventually, more non-motor and motor problems. We don't have a fix on motor symptoms, only temporary relief. It's questionable whether our specific non-motor symptoms come from illness or meds.

This was an example used...what caused your original sleep problems? For me, it was rigidity, before diagnosis...a motor symptom.
paula

Originally Posted by indigogo

A colleague pointed somthing out to me. We need to work on the motor symptoms. If they were gone, we'd be fine. Instead we get meds that compound motor symptoms and make us crazy, then we have psychiatric "symptoms". Side effects are being confused with symptoms and called symptoms."

Paula - this is backward. Our current meds only correct motor symptoms - tremor and rigidity. And the meds cause more motor symptoms - dyskinesias - when taken wrong or too long.

The problem is the exact opposite - all of the other crap we face (especially lack of concentration, motivation, no sleep etc) that keep us from functioning normally and that have been overlooked for years.

Give me a tremor any day - it's all of the other stuff that effects my life - at least for now - but, of course, they will get worse.

They have a fix on the motor skills - that's why they need to find a cure, because the meds now just fix, or mask these symptoms only for a while - they don't stop us from getting worse.

We'll all be a lot better if they focus on determining just exactly what Parkinson's is - and it's not just motor symptoms. It's much more - but what?

[indigogo]

Paula - I said in my post that the meds only mask - the problem is they don't stop the progression.

I don't have rigidity; I do have sleeping problems. The symptom stands on its own.

Bottom line, they still don't know what they are dealing with; and everyone says today that "it's not just a movement disorder."

[paula_w]

Yes, it's not just a movement disorder, and everyone is different. My point is, imagine yourself with no motor problems and for many [venture to say most] life would be much easier.

paula

[indigogo]

The patients have been short changed because the focus has been only on the motor symptoms. We won't solve whatever the disease or diseases that Parkinson's is unless we look at it as a whole; we won't get anywhere if we focus on only a portion of the symptoms, motor or non motor.