Teri-- welcome to the list and the "wonderful world of PD advocacy" ! I expect you'll hear from others re: the hearing on Tuesday. I want to send you this list of resources for PWPs and their Caregivers (CGs) in case you may find it helpful in making you feel less "new" :-) Check out what interests you as time permits, and if you have a CG who would like to join the CARE list, let me know. Teri wrote: >Hi: This is all new to me > >> I was diagnosed two weeks ago. I do live in Pittsburgh, Pa I'm 48 and >don't know very much about Parkinsons. If there is anything I can do for >the hearing on Tuesday, please reply. Teri >> ************* > >Hi new members---there are lots of good resources available for learning >about PD. Here's a partial list to give you a start: >*********** >* janet paterson's website--general information and many good links >http://www.geocities.com/SoHo/Village/6263/ >######## > >* Art Hirsch's website-- >http://www.fortunecity.com/meltingpot/farley/817/blynx.html >lots of good links., including to PD resources in : > -Argentina- -Australia- -Austria- -Belgium- -Brazil- >-Canada- -Chile- -Colombia- -Czech Republic --Denmark- >-Faroes- -Finland- -France- -Germany- -Iceland- -India- >-Ireland- -Israel- -Italy- -Jamaica- -Japan- -Luxembourg- >-Mexico- -Netherlands- -New Zealand- -Norway- -South >Africa- -Spain- -Sweden- -Switzerland- -United Kingdom- and >-Western Australia > >######## >UK >In the United Kingdom-- Contact Eileen Atkinson, <[log in to unmask]> >about the Parkinson's Disease Society which is supportive in many ways, and >also YAPP&RS. It stands for "Young Alert Parkinson People & Relatives". >It was started originally for the young-onset Parkinsonians, It's very >good for those >who fall into this category. She will supply information and addresses. > >######## > >* The easy way to find a MOVEMENT DISORDER SPECIALIST is to dial >1-888-400-2732. This toll free number will ring in the American Parkinson >Disease Association Information & Referral Center. >######## >*National Family Caregivers Association: (301)942 6430 or 1 -800 -896 -3650 >Memberships are $20. yr. for individuals and includes such things as: >Take Care", an informative mewsletter with advice and resources >CG-to-CG Peer Support Network, to help CG members find a friend in similar >circumstances >"The Resourceful Caregiver", a resource guide filled with information other >advocacy and awareness -raising activities >Costs are in US currency, and Canada residents are asked to include an >extra $12. for postage >A call to the 800# will get you a useful FREE packet of information. >######## > >* Addresses for national PD organizations in the USA: > > The American Parkinsons Disease association (APDA) > 1250 Hylan Blvd., Suite 4B, Staten Island, NY 10305 > http://www.apdaparkinson.com/ (includes directory of support groups) > Fax: (718) 981-4399 > E-mail: [log in to unmask] > TOLL FREE: 1-800-223-2732 [1-800-223-APDA] National Office > Local from New York City or toll long distance: (718)-981-8001 > FAX TOLL (718)-981-4399 > > To reach the nearest A.P.D.A. Information and Referral Center from any > location in USA, DIAL > TOLL FREE: 1-888-400-2732 [The center reached will vary with >where you > call from. For example, if you call from Salisbury, Maryland or >southern Delaware, the > call will go to Johns Hopkins in Baltimore. If that number is >dialed in > Alaska, Oregon, or Washington State, it will ring at the University of > Washington in Seattle.] > > ALSO: > > APDA Young-Onset Information & Referral Center > 2100 Pfingsten Road, Glenview, IL 60025 > email [log in to unmask] > http://members.aol.com/apdaypd > 1/800-223-9776 > > TOLL FREE: 1-800-223-2732 [1-800-223-APDA] National Office > Local from New York City or toll long distance: (718)-981-8001 > FAX TOLL (718)-981-4399 > > To reach the nearest A.P.D.A. Information and Referral Center from any > location in USA, DIAL > TOLL FREE: 1-888-400-2732 [The center reached will vary with >where you > call from. For example, if you call from Salisbury, Maryland or >southern Delaware, the > call will go to Johns Hopkins in Baltimore. If that number is >dialed in > Alaska, Oregon, or Washington State, it will ring at the University of > Washington in Seattle.] > > ********* > National Parkinson Fndtn.,Inc. > 1501 N.W. Ninth Ave. , Bob Hope Road, Miami,FL 33136-1494 > (800) 327-4545 e-mail: [log in to unmask] Fax: >305 548-4403 > http://www.parkinson.org > ********* > Parkinson's Action Network - PAN > Website: http://www.sonic.net/~pan/ > Address: 818 Suite C College Avenue > Santa Rosa, CA 95404 > Phone: (707) 544-1994 or (800) 850-4726 Fax: (707) 544-236 > E-mail: [log in to unmask] > OR > Capitol area office: > 1001 Pennsylvania Avenue, Suite 850 North, Washington, DC 20004 > Phone: (202) 628-2079 Fax: (202) 737-4242 > E-mail: [log in to unmask] > A nationwide advocacy organization > ************* > >* Parkinson's Disease Foundation - PDF > Website: http://www.pdf.org > Address: 710 West 168th St. Third floor - New York, NY 10032-9982 > Phone: 212-923-4700 or 800-457-6676 Fax: 212-923-4778 > E-mail: [log in to unmask] > OR > Midwest office: > 833 West Washington Blvd., Chicago, IL 60607 > Phone: 312-733-1893 >######## >* National Institute of Health Research News Parkinson's Disease > http://www.nhgri.nih.gov/DIR/LGDR/PARK2/ >######## >AND in CANADA: > >*National Office >The Parkinson Foundation of Canada >710-390 Bay Street ,Toronto, Ontario, Canada, M5H 2Y2 >Phone : (416) 366-0099 Toll Free: 1-800-565-3000 Fax: (416) 366-9190 > >(I have been told that as of September 29 the national office address >will be that of Central Ontario Region >--see below.) > >*The Parkinson Foundation of Canada,Central Ontario Region >4211 Yonge St, Suite 316, Toronto, ON, M2P 2A9 >Phone: (416) 227-9700, Toll free: (800) 437-6464 ,Fax: (416) 227 9600 >Acting Executive Director: Kim Anderson >********* >*The Parkinson Foundation of Canada, South Western Ontario Division >150 Newbold Court, London, ON N6E 1Z7 >Phone: (519)-680-0430, Toll free: (888) 851-7376 - Ontario only, Fax: >(519) 680-1940 >Executive Director: Carolyn Connors >******** >*The Parkinson Foundation of Canada, Quebec Division >Fondation canadienne du Parkinson, 1253 McGill College, Suite 402, >Montreal, QC H3B 2YB >Phone: (514) 861-4422 Toll free: (800) 720-1307 - national francophone >line Fax: (514) 861-4510 >Executive Director: Stephane Bordeleau >******* >*The Parkinson Foundation of Canada, Maritime Region/Nova Scotia Division >5475 Spring Garden Road, Suite 407 ,Cornwallis Building, Halifax, NS B3J 3T >Phone: (902) 422-3656, Toll free: (800) 663-2468 - toll free in NS, NB, & >PEI, Fax: (902) 422-3797 >Acting Executive Director: Janet Gammon >******** >The Parkinson Foundation of Canada, Newfoundland/Labrador >P.O. Box 2568, Stn C, St. John's NF A1C 6K1 >Phone: (709) 754-4428, Toll free: (800) 567-7020 - toll free in >NFLD/Labrador, Fax: (709) 754-5868 >Fundraising Coordinator: Hugh Cumming >******** >B.C. Parkinson's Disease Association >890 West Pender Street, Suite 600, Vancouver, B.C. Canada V6C 1K4 >Telephone: (604) 662-3240, Facsimile: (604) 687-1327, Toll Free: >1-800-668-3330 >******* >Parkinson's Society of Ottawa-Carleton >1053 Carling Avenue, Ottawa, Ontario, K1Y 4E9 >phone: 613-722-9238, fax: 613-722-3241, email:psoc.lri.ca >Susan A. Ziebarth, Executive Director > >########### >For links to PD resources in these countries, see Art Hirsch > -Argentina- -Australia- -Austria- -Belgium- -Brazil- >-Canada- -Chile- -Colombia- -Czech Republic - -Denmark- >-Faroes- -Finland- -France- -Germany- -Iceland- -India- >-Ireland- -Israel- -Italy- -Jamaica- -Japan- -Luxembourg- >-Mexico- -Netherlands- -New Zealand- -Norway- -South >Africa- -Spain- -Sweden- -Switzerland- -United Kingdom- >-Western Australia > > > > >* Awakenings > http://www.parkinsonsdisease.com/ (open forum) >######## >* The neuro website at harvard is an excellent resource: > >http://neuro-chief-e.mgh.harvard.edu/parkinsonsweb/Main/pdmain.html#mainmenu > a psychosocial article is there along with an algorithm on managing pd >and some excerpts from the young parkinson's handbook and >a caregiver's handbook > >######## > Parkinson's Institute > Website: http://www.parkinsonsinstitute.org/index.html > Address: 1170 Morse Avenue, Sunnyvale, CA 94089 > Phone: 408-734-2800 or 800-655-2273 (Canada) or 800-786-2978 (US) Fax: >408-734-8522 > E-mail: [log in to unmask] > An independent, not-for-profit organization conducting patient care and >research activities in the > neurological specialty area of movement disorders. > >######## >United Parkinson's Foundation >NOW MERGED WITH THE PARKINSON DISEASE FNDTN. > >######## >* National Assn. for Incontinence, PO Box 8310, Spartanburg,SC 29305-8310 >1-800-252-BLADDER, OR see their website at Http://www.nafc.org >--ask for their resource guide ,listing products and services for >incontinence > >########## > >Also, you may have joined after I posted the reminder about the sublist for >caregivers: here's how to join it, if you are not already a member : > >any CG who wishes to join should send to: > [log in to unmask] > >this command --in body of post:--no signature, please: > > SUBscribe CARE your full name > >The request will be forwarded to the co-owners of the list, who will add >you, and send you further instructions. > >Questions? Ask me--- Camilla Flintermann, [log in to unmask] > or---Jeff Jones, [log in to unmask] > >######## >If possible, you should see a movement disorder specialist, who is fully >informed about PD, as not all family doctors and general neurologists are. > >######## > >Specific posts about a great variety of subjects are available in the list >archive, at this URL: > >http://james.parkinsons.org.uk/search.htm > >That spot is the "starting point". That is the site you should >"Bookmark" to return to whenever you want to resume "mining". > >Click on that spot and you will arrive at the Parkinsn archive (bold >heading) As you read this page and scroll down you will come to a >bold heading "Links". > >Click on Here's a link directly to the search screen. > >You will arrive at the Full Text Search Screen page. > >Place your cursor in the box, click, then type in whatever text you >wish to "mine" (search for) and then click on the Search Button. >######## > >Hope this helps you get started! > >Camilla Flintermann, CG for Peter 81/70/55 >Oxford, Ohio >http://www.newcountry.nu/pd/members/camilla/one.htm ><[log in to unmask]> > > "Ask me about the CARE list for > Caregivers of Parkinsonians ! " >