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04-03-2010, 12:00 PM | #21 | |||
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i have been asked that question alot lindy... frankly i have no idea how to enter my stuff. i know peg said something about it too.. but she was talking about my awareness poem My Daily Show.. help?
http://www.youtube.com/user/harley78.../1/o28LTiSC_oU
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I have a post-encephalitic neurological disorder, but it does NOT have me! |
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"Thanks for this!" says: | rose of his heart (04-04-2010) |
04-03-2010, 12:03 PM | #22 | |||
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whatever it takes, I am in.. and i do have a big mouth.. lol.
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"Thanks for this!" says: | rose of his heart (04-04-2010) |
04-03-2010, 12:03 PM | #23 | ||
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Isn't it time that a small percentage of the huge sums raised for PD were spent in a way that patients would like to see it spent......... even a tiny fraction of what is raised would buy what is being discussed here........... and the possibility of people focused research. Not all research has to be done in a lab...... the possibilities of combining awareness and data collection are there, it's used with all sorts of other things..............
Lindy |
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04-03-2010, 12:05 PM | #24 | |||
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Sorry, in my enthusiasm I rather overstepped the national boundaries. Didn't mean to imply that I was recruiting you and Lindy...just thinking that we do have an international audience so to speak. Agreed that the viral video is the way to go first. My idealism has never met a dopamine agonist it didn't like... |
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"Thanks for this!" says: | rose of his heart (04-04-2010) |
04-03-2010, 12:06 PM | #25 | ||
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Here's the link.............
http://www.worldpdcongress.org/about...ompetition.cfm Quote:
Last edited by lindylanka; 04-03-2010 at 12:11 PM. Reason: add info |
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04-03-2010, 12:11 PM | #26 | |||
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if we could get non profit status, companies could donate and use us as a write off.. more ideas...
adult group homes for people with parkinsons building materials and contracters to modify homes in need of wheelchair ramps, etc. counselors familiar with pd donating time for individual and marriage counseling volunteer network for help at home respite possibly even a parkie rv park? lol.. may be stretching it here Quote:
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I have a post-encephalitic neurological disorder, but it does NOT have me! |
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"Thanks for this!" says: | rose of his heart (04-04-2010) |
04-03-2010, 01:33 PM | #27 | ||
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Hi All,
I havenot read all the posts, just Harley's suggestion of we should put up a meeting. Love that idea! very exciting. I wanted to say it doesnt have to be too fancy or too expensive. When I was in grad school, I was a member of not for profit organizations dealing with graduate students and organized low budget scientific meetings. University facilities were free to use, we accommodated out of town attendees in our apartments or got dorm rooms at a very low price, food was donated by a local supermarket. I think you dont have to be a student, if one works for a public university, you can book a class room free of charge for educational purposes, audio visuals too. Those who cannot attend, may be join by web, sort of Webminar. Oh another thought, NIH gives money to organize meetings, something worth looking into! Yes, We can dream and make it a reality! it can be done! we may not have resorts to stay, but I can offer San Diego as a venue!! This thread is going into the poster!!!!! Hi all, just checked the NIH website, they do have this category of grants. chek it out. H13 Community Services Program Conferences Active To support international, national, or regional conferences, symposiums, or workshops dealing with services for the rehabilitation, prevention, and treatment of categorical diseases. Girija Last edited by girija; 04-03-2010 at 01:50 PM. |
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"Thanks for this!" says: | rose of his heart (04-04-2010) |
04-03-2010, 03:28 PM | #28 | |||
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I am going to attempt a combo reply here. I wanted to respond more to your post of yesterday. I know what you are saying; I think, that in raising awareness, it's as if I am wearing the PD on my sleeve. You don't want the PD to ever overshadow or define you as a person, but this is precisely why we want to raise awareness. The more people who know that we are out there "hiding" behind our meds; the more they see that we are more like them, than different (not a celebrity) and hear what we go through, the PD shrinks away and they see the person first. I think we both actually have the same goal; it's just that ironically we have to exploit the PD in order to desensitize people. I hope that makes sense. I just love Harley's idea too; and it is more a grounded way of what Rose and I hope to accomplish with raising awareness. We briefly talked of a 501c status for our activist group; the patient centered meeting could definitely be part and funded by what we raise or with grant monies. Please continue on how we might select a venue, program workshops, etc. A disclaimer: I mentioned several forum members who seemed natural to me for leading workshop--I didn't mean to volunteer them! Just easier to envision how everything might work together. I will start collecting ideas and interested people may PM me- I am thinking of starting a wiki online for collaborative work...let's see how far this goes. Laura |
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04-03-2010, 07:13 PM | #29 | ||
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"Thanks for this!" says: | Conductor71 (04-04-2010), rose of his heart (04-04-2010) |
04-04-2010, 09:50 AM | #30 | ||
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This is so minor compared with what you are all writing about, but I know you'll understand. Awareness. Yesterday I took my husband's stick shift car to the store. I almost never drive that car. I pulled into the lot so I could just go forward when it came time to leave, but just as I turned the key, a guy pulled his old Mercedes nose to nose with my car. His wife went into the store and he sat and stared at me. I couldn't get the car into reverse. He glared. I didn't want to hit him. I got anxious and got out the manual to see if I was doing it right. He glared, then got out of his car and came over to shout at me that I didn't even know how to get my car in reverse. I shouldn't be let on the ROAD!!! (at full volume) I sat there shaking. I finally went over to him and explained it wasn't my car; I have Parkinson's; and sometimes it's difficult to make things work. His shouted response? "You shouldn't be let out of the house!! Don't you have someone who can do things for you?!!! You sure shouldn't be on the road!!" A scary part for me was what I almost shouted back, but I said nothing. Then he pulled his car next to mine, about 6 inches away. I carefully left the lot, went to another store, purchased my stuff, backed out easily and drove home.
This morning I watched the two videos posted above and read all your posts. On a more positive note, Nov. 6 the HOPE conference in Seattle will have Dr. Jay Alberts as the keynote speaker. We will have a tandem demo on the stage so one of your suggestions is going to happen. I'll speak on behalf of my doctor too, who is always supportive of my efforts and who is happy to encourage me to lower my meds if I feel it's okay to do so. I'm too new at the disease (2.5 years) to have had all the horrible experiences you write about. Thanks for being here. |
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"Thanks for this!" says: | rose of his heart (04-04-2010) |
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