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.
>> >>> >
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>> >
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