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Dear Ray I am fully aware that it is extremely difficult to convince the healthy people (especially politicians) that PWP need better attention and treatment. Over here in Malaysia, I have always described the "Parkinson's struggle" as an uphill task. If we don't tell others about Parkinson's, they will never know. If we don't ask for help, we will never get it. Looking at the brighter side, we are lucky to have people like you, Diane and Michael J Fox to help all the other healthy "feel what PWP feel", and ask for help on behalf of the Parkinson's community. I believe that all of us in this world should combine force. You see, I have learned a lot from this PIEN, and this "Simulation" idea from you is fantastic. Through sharing ideas, we can help the Parkinson's community in our respective countries. Special thanks from Malaysia. NK > Date: Thu, 20 Aug 2009 13:07:37 -0700 > From: [log in to unmask] > Subject: Re: Re another simulation > To: [log in to unmask] > > 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 _________________________________________________________________ What can you do with the new Windows Live? Find out http://www.microsoft.com/windows/windowslive/default.aspx ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn