Jean, and the rest of you-those were incredibly useful summaries. Jean, I copied and pasted yours and sent to a group of folks newly diagnosed who had turned to me as a resouce. Also sent to some doctors. best, Leonore
Here's my own resource list for newly diagnosed:
First:
This is a really interesting webcast on "Mind, Mood and Non-Motor Symptoms of Parkinson's" from last month, and it touches on depression quite a bit. Worth listening to....
http://event.netbriefings.com/event/...ives/nonmotor/
Next: stay on top of clinical ttrials. PD Clinical trials Home - pdtrials.org
National Parkinson Foundation - YOPN 2008 National Parkinson Foundation - YOPN 2008 annual early onset-PD conference-wonderful. It's a wonderful way for both of you to meet people and attend even separate workshops for caregivers. Every year it's in different city. This year is Atlanta. NPF, who sponsors, is the best PD group, in my opinion, and our NYU/JCC PD partnership is partially funded by NPF..
you'll learn the most from fellow PD . A good site is: National Parkinson Foundation's Discussion Corner Forums (
http://www.parkinson.org/NETCOMMUNIT....aspx?&pid=467)
For artistic inspiration, CREATIVE PDF.ORG is a pretty amazing web site, from a huge juried exhibit/performances at gallery by artists, poets, musicians, sculptors, playwrights,etc (.all with PD), at 5 day 2006 World Parkinson's Congress in DC, Scroll through whole site as you find the time, and click on gallery to see incredible art, and read stories/bios. Many artists are from other countries.. FYI. I have a bunch of poems on site if you click on my name..
CLOGNITION at
http://www.clognition.org/community.htm. It's a must read-a really educational, and, at times, funny, site about our cognitive issues written by "Parkies"
Collaborative on Health and the Environment : Parkinson's Working Group
http://www.healthandenvironment.org/...ups/parkinsons
It's an incredibly important group to hear from, and the PD Working group's leader, Jackie Christensen, is a friend from Minneapolis,, and a dynamic woman in her 40's with PD, who wrote essential book:
Amazon.com: The First Year---Parkinson's Disease: An Essential Guide for the Newly Diagnosed: Jackie Hunt Christensen, ..
http://www.amazon.com/First-Year-Par...5471515&sr=8-1
Below, another AMAZING book written by a dear, dear friend in LA, John Ball, who is 62, has PD for 35 years and is still running entire LA Marathon (and who also, with wife, Edna, runs charity for LA Marathon, called TeamParkinson's
Amazon.com: Living Well, Running Hard: Lessons Learned from Living with Parkinson's Disease: John Ball: Books
http://www.amazon.com/Living-Well-Ru...5471636&sr=1-1
A friend likes
Amazon.com: 100 Questions & Answers About Parkinson Disease (100 Questions & Answers about . . .):
http://www.amazon.com/Questions-Answ...5472241&sr=1-1
Abraham Lieberman: Books
Below, a useful web site, and highly recommended by Cyndy, my fellow social worker and also retired friend with 20 years of PD who ran her own conference on PD in '07, on PD and complementary medicine (at BMCC!) , that NYU and my doctor supported (he came and did an introduction and led a workshop)
National Center for Complementary and Alternative Medicine [NCCAM] - nccam.nih.gov Home Page
Cyndy uses western and eastern med's. and approaches, and highly recommends using Whey Protein Glutathione, among other things. You can e-mail her at
siege2377@aol.com. She's a great resource and is doing pretty well with all of her various treatments!
Superb e-newsletter about international and national news on Parkinson's out of Seattle is:
http://www.nwpf.org/AboutUs.aspx
Political advocacy work gets your dopamine flowing. There's a lot patients can do for PAN (see link below), such as writing letters to editors, sending out e-mail legislative alerts to everyone they know to contact their elected representative when an important vote is coming up.
http://www.parkinsonsaction.org
National organizations:
PDF - Parkinson's Disease Foundation, Inc. | Home
Michael J Fox Foundation:
http://michaeljfox.org/
Mohammed Ali Foundation:
http://www.maprc.com/home/default.aspx