Many of you on this list probably have the following info, but I thought it
might be helpful for those recently diagnosed or who might want a reference
book, etc. or who might want a list that had a lot of the basic resources in
one place.
This is just part of the list we will be distributing at the Santa Fe
symposium site. The other part (in case others are thinking of making up a
resource list) includes support groups in our area.
Several of the items on the list include information taken directly from this
list. I THANK YOU ALL for sharing the info. (Wendy CG John 68 +9, Santa Fe,
NM)
So here it is:
RESOURCE LIST FOR PARKINSON'S DISEASE
NATIONAL PARKINSON'S ORGANIZATIONS
If you would like to receive information and literature about
Parkinson's-contact these organizations and get on their mailing list to
receive their free newsletters.
United Parkinson Foundation (UPF) * 833 W. Washington Boulevard, Chicago, ILL
60607 * Phone 312.733-1893 * Their newsletter is chocked full of the latest
on research developments around the world; the newsletter uses very technical
medical terms and may be difficult to comprehend for the lay person, however,
the information provided is excellent. They also have a Reading List which
allows you to purchase important articles you may have missed in earlier
newsletters. This list also incudes booklets on various topics associated
with PD.
National Parkinson Foundation (NPF) * 1501 NW 9th Avenue/Bob Hope Road *
Miami, FL 33136 * Phone 800.327.4545 * Internet address:
http://www.parkinson.org/ * Their newsletter is very "lay person" friendly,
i.e., it's not technical. It has a wide variety of articles, including
research developments, travel tips, a caregivers column, etc. They have other
publications available at no cost. Some titles include, "Parkinson's Disease
& Employment," "Parkinson's Handbook," and a wonderful collection of poems
("Parkinsonnets") where a Parkinsonian, with humor and pathos describes what
it's like to live with PD.
Parkinson Disease foundation (PDF) * 710 West 168th Street, New York, NY
10032 *Phone 800.457-6676 * e-mail: PDF [log in to unmask] Their newsletter covers
a wide area of topics, latest research, drugs, etc. Especially appealing is
their ability to condense and summarize their findings.
The American Parkinson Disease Association (APDA) * 1250 Hylan Boulevard,
Suite 4B, Staten Island, NY 10305 * Phone 800.223.2732 * Internet address:
http://neuro-chief-e.mgh.harvard.edu/parkinsonsweb/Main/PDmain.html * Their
newsletter includes articles on research developments, a question & answer
column, etc. They offer educational booklets, some which are free-ask for a
list of their topics.
GOOD READS
REPORTS
"Parkinson's Disease Update" is an excellent monthly publication which keeps
abreast of the latest medical, social and psychological aspects of
Parkinson's disease and is very comprehensible. A one year subscription is
$40. For further information contact the Medical Publishing Co., P.O. Box
24622-H, Philadelphia, PA 19111* 215 947.6638, (fax) 215 947.2552.
Books-Good Basic Resources
* "Parkinson's Disease. A Guide for Patient and Family"-Roger C. Duvoisin,
M.D.
* "Parkinson's Disease. The Complete Guide for Patients and
Caregivers-Abraham N. Lieberman, M.D. & Frank L. Williams
* "Living Well with Parkinson's. An Inspirational, Informative Guide for
Parkinsonians and
their Loved Ones"-Glenna Wotton Atwood with Lila Green Hunnewell
* "The Case of the Frozen Addicts"-J. William Langston, M.D. & Jon Palfreman
DIGITAL SOURCES FOR INFO & SHARING
If you have access to a computer and are hooked up on-line, you can share and
get info on PD from the Parkinson's Disease Digest-a "global support
group"-which is a "list server." A list server collects all E-mail messages
sent to it during the day and at night, sends a single E-mail to each member
which contains all the messages it received during the day. There is no cost
or fee. To become a member open E-mail and set the TO field to the following
address:
[log in to unmask]
You will get this message:
SUBscribe PARKINSN Your_Name
SET PARKINSN DIGESTS
INFO REFCARD
Change Your_Name to your actual first and last name separated by blanks. The
word "PARKINSN" is parkinson spelled without an "o" due to a limitation of 8
characters in the name. When you send this message, you will receive three
E-mail messages back: 1) your membership, 2) setting the digest to return
messages as one E-mail message daily; and 3) a list of commands you can use
on the server.
FOR CAREGIVERSx-As an offshoot of the Parkinson's Disease Digest, this list
"CARE" (Caregivers Are Really Essential), is a
place where caregivers can share their experiences and vent their feelings.
This list is only open to caregivers-however, caregivers can still express
themselves on the Parkinson's Disease Digest. To become a member send the
following to:
[log in to unmask]
with this message SUBscribe CARE (your full_name)
When you have been added to the list instructions will be sent to you as to
how to proceed. Questions regarding CARE can be sent to the co-founders of
this group:
Camilla Flintermann <[log in to unmask]>
Jeff Jones <[log in to unmask]>
UDALL BILL -
This bill in a nutshell deals with getting more government funds for research
on Parkinson's Disease. It would set up 10 PD research centers across the
country which would allow for united and cohesive research programs, a
database to keep track of risk factors, etc., offer grants to scientists,
train health care professionals and establish an educational program to
educate people about PD.
At present, only $30 per year per Parkinsonian is spent on government funded
research, compared to over $300 per patient for multiple sclerosis, and over
$1,000 for per patient for AIDS. Ole Isacson, a researcher from Harvard
testified at a Congressional hearing that with proper funding he thought a
cure was possible within five years. The majority of scientists believe that
of all the neurological disorders, more is known about Parkinson's Disease,
which again means that with more funding, a cure is on the horizon. Since
budget cuts are imminent, it is important that we are heard from to get this
bill passed. The remaining New Mexico congressmen who have not endorsed this
bill are Senator Pete Domenici and Representative Joe Skeen. Please write
or call them to endorse this very important bill. Make 1996 the year when the
Udall Bill is passed!
The Parkinson's Action Network (PAN) is an organization dedicated to getting
the Udall Bill passed. PAN was founded by an attorney, Jean Samuelson, who
herself has PD. For further information on the Udall Bill and for strategies
as to how you can help get this bill passed, contact the Parkinson's Action
Network, at 822 College Ave., Suite C * Santa Rosa, CA 95404 * phone 800
850.4726 * e-mail: [log in to unmask]
To write your congressmen:
Representatives: Senators:
The Honorable _______, M.C. The Honorable ______United States
Senate
House of Representatives United States Senate
House Office Building Senate Office Building
Washington, D.C. 20515 Washington, D.C. 20510
If you would like to contact your U.S. Senator or Representative without
incurring toll charges, the 800 numbers are 800 962.3524 or 800 972.3524 but
please be patient because the 800 numbers take time to transfer and connect
to the 202 area code (Washington, DC) line phone numbers.
