Links to other Parkinson's Disease resources
National Parkinson Foundation, Inc.
Parkinson Information Exchange Network — an International E-mail List and Website About Parkinson’s
CARE - for CareGivers of people with Parkinson's*************************************************************************************
*************************************************************************************Clinical Trials
The U.S. National Institutes of Health, through its National Library of Medicine, has developed ClinicalTrials.gov to provide patients, family members and members of the public current information about clinical research studies. Enter the search term "Parkinson’s Disease."You’ll get a listing of current clinical studies, with details, including recruiting information.
*************************************************************************************
*************************************************************************************Young-Onset Parkinson Resources:
When Parkinson's Strikes Early--Voices, Choices, Resources, and Treatment
-- Barbara Blake-Krebs, M.A. and Linda Herman, M.L.S.
...an estimated 15% of all Parkinson's Disease (PD) patients are diagnosed under the age of 50. In this book...the roads to self-empowerment that can be found through the support and resources of the PD global community. Topics include:
The authors' goals are to advance public awareness and understanding about Parkinson's Disease and to increase research funding...also includes a listing of resources, grassroots advocacy ideas and a complete index.
Paperback $15.95 ISBN 0-89793-340-0
All royalties from this book will be donated to Parkinson’s Disease research
When Parkinson's Strikes Early--more information*******************************************************************************************
*******************************************************************************************GRASSROOTS CONNECTION -- Online Neurological Advocacy
Our Mission is the creation of concerned individuals who have been impacted by Parkinson's Disease and related conditions. We believe that our concerns and needs will be more adequately addressed by our elected representatives through the tools provided on this site.
During the past several years, we have increasingly turned to the Internet for medical information and support. This site is intended to extend the role of the Internet to include advocacy efforts.
Our mission is threefold:
1. To develop a host site for communication and sharing information about Parkinson's Disease and related conditions, research funding, and how we are represented in Congress.
2. To monitor relevant topics, such as funding, and to present them here.
3. To magnify the impact of individual views of grassroots constituents by collecting their signatures and comments together for forwarding to our elected representatives or other appropriate agencies.
We believe that by uniting to participate in advocacy efforts we are better able to influence lawmakers to pass legislation and budget funds for treatments and research necessary to eliminate Parkinson's and other devastating illnesses.
http://www.grassrootsconnection.com/
*******************************************************************************************
*******************************************************************************************A Special Home For Bob
Launched at the 6th Multi-Disciplinary Conference on Parkinson's Disease, Melbourne, Australia 2001.
This short educational video and accompanying hand-out provides detailed information about the design and the special products used in a home which was specifically designed for a person with Parkinson's Disease, the particular focus being to lessen the impact of backward falling. The home is practical "cozy, vibrant and interesting", easy to maintain and works well for both partners. The owners have shown how to maximise a person's abilities and minimise the impact of disabilities. A valuable resource for health professionals and for anyone wanting to design with the specific needs of any individual. Empowering, the video reinforces the holistic approach needed to address the challenges of PD or any neurological disorder.
Filmed by Mondo Productions for the Parkinson's Association of Western Australia.
For ordering details go to "Publications" at:
http://www.quartec.com.au/parkinsons*******************************************************************************************
*******************************************************************************************Build an all-purpose movable table,
designed to meet the needs of people with Parkinson’sby Bill Woolley, White Rock, BC, Canada
A few years ago I had a moveable table made that I could roll around in front of me. Now I can read books or newspapers now without having to hold them. I can also use it for writing, eating, studying, and other purposes. Being on rollers, I can move it from room to room if I need to.
It was made by some students as a "school project." It is very simple and inexpensive to make. My hope is that it may help some body else, as it has helped me. Here are the measurements for the table. You may e-mail me if you have further questions. I can also send photos of the table, as attachments.
bill.woolley@shaw.ca
Measurements:
The table frame is made of 1 inch tubular steel.SIDES (2):
Height (not counting wheels): 25 inches high
Width outside: 21 inches
Width inside: 19 inchesBACK (1):
Height: 25 inches high
Width outside: 26 inches
Width inside: 24 inchesTOP (1):
Width: 32 inches wide at top
Length: 32 inches long(My table was only 26 inches long. I found that this was too short, so I would recommend 32 inches in order to have room to rest your elbows.)
TOP LIFT PLATE:
12 by 18 inches, with piano hingeTOP FRONT (cutout):
22 by 13 inches(When I found that the arm rests were too short, rather than having the top done over, I got 2 boards [18"
x6" x1" ] and placed them on the arm rests with a clamp on each side. This allows me to move them up or down as needed, as well as having additional flexibility.)Suggestion: Get white wheels not black.
