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thanks NK, it is heartening to know that somewhere on this planet, I am maybe being of use. We PWP are truly on a high wire with no safety net. Ray Rayilyn Brown Director AZNPF Arizona Chapter National Parkinson Foundation [log in to unmask] -------------------------------------------------- From: "chew nee kong" <[log in to unmask]> Sent: Thursday, August 20, 2009 2:03 AM To: <[log in to unmask]> Subject: Re: Re another simulation > Tie their ankles together and tell them to walk. this would be good, I > think, as they would be forced to take short shuffling steps and would > trip themselves. One hand tied behind back would be a nice touch. > > Ray, this is really a good one. I think this can be a good idea - I will > suggest to my colleagues to include this as one of the programs in the > next World PD Day event at Malaysia. I am sure the Press will be happy to > take a photo of healthy volunteers on the stage taking part in this PD > simulation. > > Recently a group of students walked blindfolded in the street to promote > awareness of the blind people. > > NK > >> Date: Wed, 19 Aug 2009 11:52:25 -0700 >> From: [log in to unmask] >> Subject: Re: Re another simulation >> To: [log in to unmask] >> >> Sami >> >> guilty as charged!! I just think PD is an ornery, wicked disease, not >> the >> worst maybe, but bad enough. >> >> Ray >> >> Rayilyn Brown >> Director AZNPF >> Arizona Chapter National Parkinson Foundation >> [log in to unmask] >> >> -------------------------------------------------- >> From: "Sami" <[log in to unmask]> >> Sent: Wednesday, August 19, 2009 1:47 AM >> To: <[log in to unmask]> >> Subject: Re: Re another simulation >> >> > Good grief, Ray. You really do have a little ornery streak hiding >> > inside, >> > don't you??? LOLOL >> > >> > Sami >> > >> > -------Original Message------- >> > >> > From: rayilynlee >> > Date: 8/18/2009 11:03:24 PM >> > To: [log in to unmask] >> > Subject: Re another simulation >> > >> > tie their ankles together and tell them to walk. this would be good, >> > I >> > think, as they would be forced to take short shuffling steps and would >> > trip >> > themselves. one hand tied behind back would be a nice touch. >> > >> > Ray >> > >> > Rayilyn Brown >> > Director AZNPF >> > Arizona Chapter National Parkinson Foundation >> > [log in to unmask] >> > >> > -------------------------------------------------- >> > From: "Duggan, Meg" <[log in to unmask]> >> > Sent: Monday, August 17, 2009 11:54 PM >> > To: <[log in to unmask]> >> > Subject: Re: A more suitable name for PD. And an idea you can help >> > with!! >> > >> >> Here in KS, we are almost done with something we are calling the "one >> >> in >> >> a >> >> million challenge" tag line: For more than a million Americans with >> >> PD, >> >> simple daily tasks can be major obstacles. What would it be like if >> >> you >> >> were in their shoes? Take this simple challenge and find out. (early >> >> thoughts!) >> >> >> >> So, we are still in development, but have a velcro walk - as it >> >> sounds, >> >> long velcro carpet with velcro shoes to simulate feet stuck to the >> >> floor. >> >> We have a bunch of very cool cognition tests, which we have people do >> >> then >> >> we distract them or make them much more dificult to simulate loss of >> >> executive function - just trying to show how much harder it is to walk >> >> through the world with PD. Doing some adl stuff - get coupons, get >> >> money, >> >> sign a check, timed and with added issues like a pen that vibrates and >> >> super small lines to write in. Button, buckle, lace, zip - all of it >> >> just >> >> a bit harder, we've had some gloves made for people to put on for >> >> those >> >> tasks. Anyway, you probably get the idea. We are going to travel >> >> with >> >> this - to places that don't usually care about PD - like outdoor music >> >> fests and places where the young and partyish hang out - hoping to >> >> give >> >> them an experience that they will remember and bring them aboard to >> >> our >> >> cause. Its fun and quite a moving experience - feedback is all good so >> >> far. >> >> >> >> So - all this is to say that I am thinking the Tshirt, super duper >> >> pain >> >> in >> >> my brain etc.. might really be a fabulous and fun kind of thing. I'm >> >> sure >> >> if you did it in some very cool and graphic way, you could get young >> >> people asking other young people ( substitute trendy, engaged, >> >> interested, >> >> philanthropic, anyone with time. money, energy and passion for young) >> >> asking about the shirt and what it means. >> >> >> >> I'm loving the super duper pain in my brain vibe... >> >> >> >> I'd also love ideas. We are trying to invent the simulations, trial >> >> and >> >> error so far, and would love ideas. We have some cash to devote to >> >> this, >> >> and really want to make it a very professional, profoundly moving >> >> experience. Thoughts anyone??? >> >> >> >> Love you guys one and all! Meg >> >> >> >> ________________________________ >> >> >> >> From: Parkinson's Information Exchange Network on behalf of Kathleen >> >> Cochran >> >> Sent: Mon 8/17/2009 7:55 AM >> >> To: [log in to unmask] >> >> Subject: Re: A more suitable name for PD. >> >> >> >> >> >> >> >> I see T shirts! >> >> >> >> Kathleen >> >> >> >> >> >> >> >> 2009/8/17 Moneesha Sharma <[log in to unmask]> >> >> >> >>> Love this! >> >>> Moneesha >> >>> >> >>> >> >>> >> >>> 2009/8/17 MyFirstname Mylastname <[log in to unmask]> >> >>> >> >>> > I totally agree............let's not lose sight of what needs to be >> >>> > done >> >>> > here......a cure and not a new name. >> >>> > It's difficult enough raising funds for research for a disease we >> >>> > can >> >>> > pronounce...........Try raising awareness for the >> >>> > >> >>> > >> >>> SuperDuperPainInMyBrainStiffBodyShakyQuakyDroolin'WhoAmIFoolin'I >> > veBeenHitByaTruckThisDiseaseReallySucks >> >>> > Research Foundation. >> >>> > >> >>> > ---------------------------------------------------------------------- >> >>> > To sign-off Parkinsn send a message to: mailto: >> >>> > [log in to unmask] >> >>> > In the body of the message put: signoff parkinsn >> >>> > >> >>> >> >>> ---------------------------------------------------------------------- >> >>> To sign-off Parkinsn send a message to: mailto: >> >>> [log in to unmask] >> >>> In the body of the message put: signoff parkinsn >> >>> >> >> >> >> ---------------------------------------------------------------------- >> >> To sign-off Parkinsn send a message to: >> >> mailto:[log in to unmask] >> >> In the body of the message put: signoff parkinsn >> >> >> >> >> >> >> >> ---------------------------------------------------------------------- >> >> To sign-off Parkinsn send a message to: >> >> mailto:[log in to unmask] >> >> In the body of the message put: signoff parkinsn >> > >> > ---------------------------------------------------------------------- >> > To sign-off Parkinsn send a message to: >> > mailto:[log in to unmask] >> > In the body of the message put: signoff parkinsn >> > >> > ____________________________________________________________ >> > >> > >> > No virus found in this incoming message. >> > Checked by AVG - www.avg.com >> > Version: 8.5.392 / Virus Database: 270.13.61/2312 - Release Date: >> > 08/18/09 >> > 18:05:00 >> > >> > >> > ---------------------------------------------------------------------- >> > To sign-off Parkinsn send a message to: >> > mailto:[log in to unmask] >> > In the body of the message put: signoff parkinsn >> >> ---------------------------------------------------------------------- >> To sign-off Parkinsn send a message to: >> mailto:[log in to unmask] >> In the body of the message put: signoff parkinsn > > _________________________________________________________________ > Share your memories online with anyone you want. > http://www.microsoft.com/malaysia/windows/windowslive/products/photos-share.aspx?tab=1 > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: > mailto:[log in to unmask] > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn