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Meg I think you should inform people that nothing you have proposed really comes close to what it feels like to have PD, but are approximations because of insurance concerns. You might tell them about some of those wicked ideas. It is not going to be as easy to duplicate as eating in the dark. Suddenly and unexpectedly falling is the reality PWPs face and you have to think about movement constantly to try to avoid such accidents. There is no moving on auto pilot any more. I also don't think every PWP experiences these symptoms in the same way. Difficulty speaking, I think, bothers me physically more than it does other people and it is very difficult if not impossible to communicate what it is like. I wouldn't have understood either before it happened to me and I think that is true for so many PD symptoms. before DBS tremor drove me nuts. Good luck and great idea. Ray Rayilyn Brown Director AZNPF Arizona Chapter National Parkinson Foundation [log in to unmask] -------------------------------------------------- From: "Duggan, Meg" <[log in to unmask]> Sent: Tuesday, August 18, 2009 7:32 AM To: <[log in to unmask]> Subject: Re: A more suitable name for PD. And an idea you can help with!! > Thanks - We've had some seriously wicked ideas, rejected for insurance > purposes... > > All the stuff that touches people has to be either worn over something > disposable, or be disposable for sanitary reasons. Speech wise, we were > thinking of seating people across from each other with a barrier between > them. Have the person simulating PD maybe have to keep a giant jawbreaker > in their mouth and communicate various things they are given pictures of > to the listener? Does that come close at all? > > All of our materials and things end with "This is what it feels like to > have Parkinson's disease" and we want that to be as true as we can make > it.... > > I hate to say that this is fun, but we are so geeked about getting people > to understand this through experience...we'd be happy to trip them, but I > don't think the lawyers would! > > I went to a dinner for a charity for the blind and we all had cocktails > etc.. then moved to dinner and ate in total blackout conditions. It's > really stayed witth me. I want people to move through the world and be > constantly reminded of the challenges PWP face. > > When its done, we'll share what we come up with and how we built some of > this stuff with other PD organizations in hopes that we can get something > like this going other places. Our first thing is the end of the tour of > MO bike race - 20,000 atheletes visitors to be educated...Let's get > em!!!!!!!!!!! > > ________________________________ > > From: Parkinson's Information Exchange Network on behalf of rayilynlee > Sent: Tue 8/18/2009 2:55 AM > To: [log in to unmask] > Subject: Re: A more suitable name for PD. And an idea you can help with!! > > > > Meg > > great what you are doing!!! > > I have one simulation idea > make the person wear mittens for anything he/she uses hands for like > preparing a meal, eating one, flossing teeth, signing your name, typing > > > also, some maybes > > strangulation while trying to speak is harder - it is very difficult to > communicate what this is like. maybe put duct tape on person's mouth or > gag > them. > > maybe weights could be worn to simulate turning to stone and stiffness > > poor balance, sneak up and trip them > > tremor - shake them > > 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 > > > > ---------------------------------------------------------------------- > 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