Perhaps we of MPT ought to come up with some suggestions on how to use the truly large and varied amount of information, data, speculation, etc. available. Let's find ways to USE it - after all, we provided it. I am well aware of the consequences possible when one "goes public". However, having the info just sit there isn't doing anybody any good. There was a lot of thought and energy that went into producing it. Those actions were valuable in themselves BECAUSE it made us think and expend energy. But why stop there?

There is a chance that a bit of coherence and substance will be beneficial in spite of the almost infinite triviality of the data oversaturation which we have allowed to happen over the last thirty or so years. Yes, I know...I found the soap box. Rants are fun, but doing something substantive (if only to us) is MORE fun.

Maybe it sounds like I'm talking about an "inmates running the asylum" scenario, but that isn't where I was heading at all - I just like to see ideas and thoughts actualized.

Gang, what do you think?

We are all so different in what works for us. Doctors will typically start you on a low does of a. medication that seems to work on the majority of cases. From there they usually woulf try the next treatment and so on. Nothing works for everyone. Truthfully, it is a difficult disease with no cure but possible help in making our symptoms more tolerable. My mother lived past 80 and passed from complications from decades if smoking. She had Parkinson's for many years. The meds she took were valuable to her quality of life.

be as.nosey as young like. I am not precious. I retired because I had a bad reaction to thear meds. I had too go through withdrawal about and start again. I was in a bad way. .took 12 months to find Ned's that agreed with me. . in the end .dbs was my only choice. ...

@A MyParkinsonsTeam Member - another country heard from (literally in your case and please remember my bent sense of humor). This is great stuff that is coming out here. I think IMO (I think I may change my middle name to IMO) that identifying some players here from the MPT team and the MPT org/infrastructure - I want to make sure I/we are not working at cross purposes with the MPT org.

I used the suggestion mechanism here and got a canned response - shame on me for not rattling more cages at the time. MPT organization, who are you? I would like to get to know you person to person - I may be missing the way to do that but indulge me...communication goes both ways!

Is there any point of contact anybody knows of in MJFF? By that I mean a real person, not a suggestion box. One reason I ask is they might have some suggestions about hot buttons that could be addressed by us to our mutual benefit. Let us waste no pitches.

It must seem like I am a loose cannon at this point. However, there is method in my madness. I want to help maximize the effectiveness of the raw talent and enterprise that the gang here in MPT has so amply demonstrated. More formalized lines of communication is the place to start - IMO (there it is again). let's not dilute our chance to work together because we don't have communication.

I am beginning to rant (it can be such fun!) so I will quit. It is time to meditate because I get mood swings when I get too revved up - if some of you have similar issues, I recommend meditation. I was skeptical but I found it works.

Hey, tomorrow starts the work week and I'm retired...will somebody explain to me why I still get up so early? I kept reading all those things about the golden years, relaxing and finally doing what I REALLY wanted to do for all those years. The trouble is, I LIKED my profession, I didn't have anything I always wanted to do, relaxing is boring...do you think I somehow don't fit into the golden years - once a misfit, always a misfit.

Mentioned Users

A MyParki...

I think it's a great idea.
Just stop me if I get writing too much about this potential project.

Would we need a professional writer? Statistician? Editor? Or could we do it with some of the MPT membership? Can we include other information such as what we get talking to people about non-PD issues they have because of PD?

The original questions could easily be organized. Within each 'answer' there are other questions and answers to be weeded out. Would we want to include statistical information, like how many people said the same thing, or how many answers were receive? Age of onset, etc. Could we go on to individual walls and parse conversations, pulling out only the PD stuff. I can see it coming together as a booklet that can be on the MPT site. Does not need to be large. How do we get started?

I'm ready to jump right in.
What permissions do we need?
The only administrative person I know of would be Lynette

Ok I'm getting over-enthused again, but this sounds like a great idea.

I even thought that it might be good to put together a children's book about PD.

I don't think I am qualified to run the show, but I can certainly help.

Would need to start soon, before we loose interest and momentum.

We need to talk about this a lot more. I haven't reached the word limit yet!