[Conductor71]

Hi folks,

Well, I was absolutely stunned to receive a notice from my MDS that he wished to follow me on Twitter! At first I thought it a little odd than quickly started thinking of the possibilities. We tend to wall ourselves up within the cozy confines our our forum(s), and Twitter is finally a way to knock down those walls and bring together the larger PD community. If we could get more doctors and even some researchers on board this could be phenomenal. The best part is that it is as anonymous or full disclosure as you would like and way easier to get going than Facebook.

We actually come together through lists or hash tags. I have a main idea and then lists - I created two. One for Neuro Talk (NT) and another LWP (Living with Parkinson Disorders). Davis Phinney is there. So is Grant Hill. The biggie is my doctor is there and he sees what I am Tweeting and what any of you are Tweeting.

This is one of my doc's latest Tweets:

PD misconception#2 - PD only affects my movement. Truth: There are many common symptoms in PD that are unrelated to movement!


Of course, we already know this, but not all PWP out there are members of Neuro Talk I give my doctor huge props for seeing us as important enough to connect this way; we may not be "equals" but it is a colossal step in the right direction. Please give it a try!

I have sent out personal invites to some of you in my main gmail account. If I didn't contact you personally, it does not mean you are not welcome. Connect to my profile at http://twitter.com/LGGE

Laura

[indigogo]

Laura - I'm new to Twitter, and I really don't "get" it yet, but I signed up a while ago for my blog : http://twitter.com/pdponygirl

How do we get connected to each other ? That's part I don't get - how do people find you or me or your doc ?

I think this is an important networking tool, but I need to know better how to use it - thanks !

[jeanb]

If you know someone's email address, you can search for them that way on Twitter. I've found it kind of hit or miss trying to find people tho ...

Jean

[Conductor71]

Originally Posted by indigogo

Laura - I'm new to Twitter, and I really don't "get" it yet, but I signed up a while ago for my blog : http://twitter.com/pdponygirl

How do we get connected to each other ? That's part I don't get - how do people find you or me or your doc ?

I think this is an important networking tool, but I need to know better how to use it - thanks !

I'll try to keep this brief, ha.

I agree Carey and Jean, the search feature is awkward. I think the easiest way to get connected for beginner is to connect via established profiles. My profile is at http://twitter.com/LGGE then click "Give it a Try". Register, click back on my profile to see who I am following, click on those little boxes to see profiles, and then follow any one you want that way. It feels weird because in FB it would be like Spamming Friends. Not so in Twitter. The whole idea of Twitter is to gather more followers. Jean is now "following" my doctor, no problem. I even researched the etiquette on this and it seems it's perfectly acceptable if not the norm.

As for what it can do or "getting it". Twitter is like Facebook minus all the stuff. Think of it as like a running commentary of your status (no, you don't want to give everyone a logistical outline of your day). You have 140 or less characters to play with and the whole idea is to draw people in to follow you. Easily we can get PWP together, but think of how you might raise awareness and draw non-PD people in. Carey, the whole story behind your horseback adventure could be shared in a series of Tweets and draw in many people. Rick could leave intriguing facts from his research blog to draw others in; I bet my doctor would love to see his blog and would never otherwise make it there if not for Twitter. Try to think of how others might connect to your story with the PD as an added dimension. This is a challenge.

With Twitter, unlike FB where you are only mainly visible to friends, your Tweets are public. CNN mines Tweets for news. Think of how the whole Bob with PD and the Tea Bag protest might have played out differently if we were posting our reactions, en masse...news sources could have been seeking a unique perspective from our community and one of our Tweets could have gone viral- going viral is like the Notes that were spreading like wildfire across FB. The viral version on Twitter is called a Retweet- this is where a tweet is considered so important, it keeps circulating. This is also a way to "meet" new people on Twitter you may want to follow.

Hope this helps somewhat! Here are links for guides. Here is a PDF Twitter Guide or online Tutorials.

Jean's been on Twitter for awhile and has direct connections to research centers and VIP like Katie Hood- you might want to start there to find people to "follow". Interestingly, I don't see a profile for MJF or MJFF. There is; however, a group for PWP. I am still working on joining that one.

Hope to see more of you tweeting soon!

Laura

[Conductor71]

**wanted to add...

Don't be frightened off by the public eye aspect of Twitter; you can be anonymous by not posting an actual pic of you and in omitting your name from your profile. Keep in mind that people also often establish two accounts for different purposes; one can be much more private for family and friends and the other for a cause.

Okay, no more blathering.

Laura

[indigogo]

that was very helpful, Laura!

I've been reluctant to start "tweeting" because I think it works best if you do it consistently - I'm afraid of both ends of the spectrum - either I will get pulled in and become obsessive or I will do it in fits and starts and never build a following. I guess I don't want to start until and unless I have something to say on a regular basis. I do plan to tweet the horseback ride; I am getting ready to drive to Colorado to "meet the horse," - I've been waiting until a story thread begins, so maybe this is the time. Also - I don't have a smart phone; I rely on my laptop so I don't have steady access to the internet. I'm thinking of getting a netbook - in between a phone and a laptop. So many decisions to be part of the new communications/technology network !

[jeanb]

Thank you, Laura - terrific explanation

I've not been very good about 'tweeting' and then I forget that it's "attached" to my facebook page and everything I tweet goes there as well!!

One hint I have is I try to write "parkinson's" in every tweet because if people search on "parkinson's" or parkinson ... I will show up. That is how I found some researchers, and how some people found me as well.

I don't have twitter set up to go to my phone - I am not sure I want all that going there at this point ... but I DO think it will be a great type of technology to use in Glasgow at the upcoming World Parkinson Congress -- tweets about what is going on live. that could be exciting!

PLUS the neurowriters could post their progress on twitter - followers would learn what is going on and when to check the website for updates ... just a thought!

Jean

[Conductor71]

Jean,

Thanks! You have quite a head start on gathering together PD people on your site; I hope it is okay to encourage others too see who you are following to to get themselves started?

I think that putting "Parkinson's in your Tweets is a great idea! I get hung up using acronyms. There is also a way to use what are called "hash tags". These are little subjects or keywords one can use to keep Tweets related to one thing in a list. I've just started playing with those and honestly can't figure out entirely.

NanCyclist is now there and available through "following" me or searching for her Twitter name. I am really hoping that her doctor who is heading up the research will join Twitter and connect many more people to our cause.

You are spot on with the Neuro Write idea. I suggested that we might look
into Tweeting to keep others up to date on the project; this is what I began to envision for he projects- as soon as we canc

[Conductor71]

Hi all,

Well, I happened to test the power of Twitter and it is pretty amazing. I was searching the site for "Parkinson's" to see if it was at all even mentioned in the last few days. It just so happened that I searched when a boxing match involving Shane Moseley had just been called. There was a steady stream of comments about Moseley shaking and of course ignorant, none too nice commentary by many young people, so I decided to update my Tweet to "Shane Moseley and Parkinson's? Not all people shake. I know cause I have it, and so does Brian Grant." I saw the opportunity to link in an athlete with YO...

I stopped the entire stream in its tracks!!! Maybe it's because I look young and my son is in my photo too. Either way, it made people stop and think before they continued on with the stupidity. Note how the tone of the last "sport's commentator" has changed! Saved the search so anyone who wants to can see it in action. Here is the link to the live feed
http://search.twitter.com/search.ato...0parkinson%27s

Please get out there and make a difference.

[jeanb]

Laura sharing is what it is about. I found people thatway -- of course get contacts from my Twitter list is just fine. I need to look into the hash mark subjects you mentioned
jean