[paula_w]

working on this video has put me not just at the computer but working on it all the time....it's just like when i was doing GRC. i had neck surgery and back epidurals [sp]? and was so rigid and oh you know what i mean..it's not good for you. the side effects of doing something fun. So the video came up fast and at first i thought we should do it in ..like two weeks..lol....but it seems that pwnkle had a few other things on her schedule - like an art gallery show of her paintings, and a talk to give at a symposium, which is tomorrow so she had to have space and i had to learn how to adjustto her way of doing things, which is completely the opposite of mine. I hadn't talked to her in years....so the pd progression is a factor, but i knew it had to be carol and called her and said "I NEED YOU" And we picked right up where we left off....i had to learn that she does't work thru updates, doesn't particularly like to talk on the phone, - i quickly learned to keep them short and to the point. carol handled me and the situation with class as i tried to convey the need when she hadn't been online for yrs. dealing with someone who i trust will do a good job, not saying we are producing anything grandiose, but now i don't care so much what it looks like - but carol patiently waited until i tried something ridiculously difficult and just wouldn't work, , and finally she said, let's keep it simple, i've been doing one too and was going to merge with yours at the right point - she's so diplomatiic. i said oh thank god mine sucks and i don't know what i'm doing.

so now we know where we are going and it's just a matter of putting everything together. and i want to tell a quick story.. we have one section of pictures, good pictures, and have added musiic. But there is a second and poosibly scattered throughout a need for more of the story. So this is my last call and it's directed at you here at neurotalk. i'd like a picture of anne forbert wrapped, one of rick- gosh take you pic.....ron - i'm sure you have a picture of an injury? i want pictures of injuries, surgeries, and alternative stuff. gregd any pictures of any from ur year of the bone breaking and topped off with wrestling down a robber at a restaurant and holding him till police arrived?

fiona, you have to have some of the best global possibilities , you don't have to spit to be in the video...sorry like i said, i have been working on the visual - clearly not my area. Anyone here please send a picture so that i can tell a story but the file has to be bigger, like 4 by 6- 6 vertical. if i get enough, i could do an alternative flash and the unpleasant injuries and mishaps that aren't so funny flash. But i need them by Saturday.
Ibby? zuchinni flower and olsen, lurking for a cure. why am i naming them i'lll just leave someone out - you get it.

Please try and sorry it took so long but yu can tell a meaningful story with pictures and text about the community that 23andme is entering.
it took me this long to realize that i need to say, you don't have to spit to tell our story. i'm not too quick but it came eventually - but depends on you guys to do it now.

i can't possibly name everyone, just all of you, send to spit4pd@gmail.com

Let's make it real,
thanks,
paula

[Fiona]

Paula, so sorry, tried to look for your other thread in which you describe specifically what you need - I'm a little confused. Could you just give me the link to the thread so I can rethink the information and see if I could help in some way?

[bluedahlia]

Pictures of me. Easier for me to post them here than try to figure out how to email them. Feel free to crop them.Don't have any on disk that are casual.





oops, I lied. Found one.



And finally.....After battling PD, Breast cancer, and more recently Thyroid Cancer, this should be me! hehehehe!!!!!!!!!!

[pegleg]

You are quite an attractive lady! (maybe even prettier than Wonderwoman). lol

I agree that there's been so many changes that it would be beneficial to have the new and improved (and simply simple) instructions given here.

paula, can you sit at the computer just a little longer? thanks.
Peg

[paula_w]

you have reason to be confused because i keep adding to what i need as the picture becomes clearer of what i am trying to portray but now i think i've got it.

what i need is actually in the post above. It didn't occur to me until last night that i was lmiting the pictures at first to those who are going to spit. Then i thought i should include pictures of pwp and emphaze time somehow.

It wasn't until i was freed up from the laborious and impractical method that i was attempting to communicate with on this video, carol finally saying it and showed me what she has done so far that i could relax my mind and concentrate fully on what i want the video to say about us - we are the communiy, which is quite possibly a first for 23amdme also. They are about trying to form research communities and people finding each other who have genetic similarities.

We 've already done that - our communities are already set up as pd being the common thread. so result comparison will begin immediately - we don't have to hunt each other down.

i'm tellling the story at the risk of repeating because i think you should fully understand what i'm asking and who is doing what.

the diffference between what i am doing and the actual DNA analysis is that we are doing a u tube video with 23andme about the genetic analysis, spitting, discount coupons, etc. the idea started just because we were fooling around talking about spit and without even settting out to, we came up with SPIT standing for Stopping Parkinson's in Time. With sergey brin finding out he has the LRRK 2 gene mutation [I think] and with other genetic testing, a group may emerge, joining those of us who already urgently need a treatment, who also need it to be stopped or treated in time in case they get it. I have been wanting to do 2 things here at neurotalk for some time - make a video and collect data.

And as always, and i do mean that, the opportunity came along. Debi Brooks mentioned it to 23and me and they liked the idea of the spit acronym and some of the humor we could use. A video presentation doesn't materialize overnight, and as i get more into it, i see a real opportunity to show our community with realism - that means not pictures of happy people at the walk in NYC. Most of us can't afford the walk and may deserve to be sponsored but aren't.

To portray this community accurately, i need to have an alternate treatment picture flash/ include the spiritual aspect, show a counter full of products along with alll of your chemicals - like curcumin, mucuna pruriens, exercising, and here's where i 'm think you might have wonderful pictures of your acupuncture, your trips and your dancing, Fiona. Ibby i think your thinness could be shown but understand if anyone doesn't want to be in it or show themselves.

when i first came to the old chat and forum at mgh, alternative treatments were scoffed right off the board as quacks and salesmen, and religion was given almost no tolerance in conversations. i'm trying to think if the latter has changed.,,,lol

We also are partly crazy - let's face it - you don't get thru this without being a little crazy - emotionally and cognitvely. perhaps joy's rudoph the rednose reindeer picture should be included here...lol....my rambling in some manner, etc. we can add text to nudge the real meaning from the pictures to the viewer.

finally, i want to show the pain, the injuries , the surgeries, clnical trials -- reality.

bob's rap is perfect and it's a video. you can send video if you'd rather, i just can't guarantee what will be actually used/ if pictures are too small they may not be. i have turned that over to carol

by the way, aftermathman, who is a hppily married man i'll say first i assume, is quite handsome! but i have to say, he and vicky along with girija and bob. are the only ones who have sent anything. not to make anyone feel guilty, i haven't been as well defined in what i'm doing until now...but we have two days. once we have the 23andme video to add, we've got to finish it.

so this really is last call. i don't want it to be just the old regulars altho we have earned our spot - but i want it to be just that - a spot.

23andme requested a picture of someone at the computer doing a survey. Achilles, i was thinking that if possible, even if you don't want to show yourself in the video, you could sit at a desk, have your results and the computer screen in the picture. No pressure and of course i understand if you can't. i need a few pics of people mailing it back before we launch into their video and what goes on at their end.

ok another book to read here but i wanted to make sure the whole picture is in one thread.

fiona, i think in the other thread, you wer talking about actually spitting is that correct? when you said if yu didn't have to see the results, be identified or cost anything. Actually, i just remembered that new york is one of the states where it is illlegal so you can't participate unless you went to new jersey and mailed it.

but should you actually do so, you can be a bar code and not a name. also, you don't have to look at your results. i'll check on the bar code but i'm pretty sure. and it would cost $25.

i hope that clears it up. thanks for your tolerance for me. i do ramble on.....i need to be locked up for a couple hours everyday in a silent room and just meditate.

oh i see this below...not sure where its supposed to be in the post and am tired already so i'm just going to let u read it where it is...sorry.

there will be a good blend of music, humor, and serious education - 23andme have sent video showing their office [lab is elsewhere] but have included some people who work there and the two cofounders. that part will be serious.

That's where my requests from anyone end. i just need pictures. We have discussed the pros and cons ourselves and of course it's a personal decision

The End
p

Originally Posted by Fiona

Paula, so sorry, tried to look for your other thread in which you describe specifically what you need - I'm a little confused. Could you just give me the link to the thread so I can rethink the information and see if I could help in some way?

[paula_w]

grant r just called - a professional audio tech for tv who works with professional video techs.....carol's creativity may be enhanced to its fullest with some of the possible suggestions we talked about.....timing - i have learned to follow - and trust -already know i'm being led.

paula

so busy writing just saw the pics - another smart and good looking pwp. but you have suffered enough. thank you blue dahlia.

[bandido1]

Paula: Just a throw away idea. Do you think Tena would allow you to use a couple scenes from the "Championship" video? I can't think of anything more graphic to illustrate some typical PD'ers. Bob C

[paula_w]

That's an idea. i will talk to tena and to carol because she is the one who put it online.....thanks bob!

paula

[Jaye]

Paula,
I had a surprise tooth extraction on Wednesday and am just now seeing this. I have to go to a meeting right now and will try to stay awake to send pix tonight. Carol has lots of pictures of me anyway, all of which you are free to use. TTYL
Jaye
P.S. That's my story and I'm stickin' to it.