Areas and Ideas that I need help on
I need some help for the following items. If you have them, please send
me a copy and I will work to post them here:
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Photographs of:
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Central or South American hammocks in use for Huntington's disease patients
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Floor bed
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Floor bed with a plywood surround
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Information on other sitting and sleeping arrangements
Communications
People in the Huntington's disease community have talked about setting
up a communications system between different sites to share ideas, questions
and solutions. There are many ways of going about this. For example, if
you have gotten to this point other possible solutions are:
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FAQ(Frequently Asked Question) document
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Adding items from the FAQ to the pages that have been developed
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Posting of questions to readers of this page. This is similar to what is
available at the site maintained by the Massachusetts General Hospital
and Harvard University at Huntington's
Disease Menu
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A list server or password limited newsgroup. When Carol and I started to
talk about this page, we felt that it would be inappropriate to have questions
posted to the world with possible identifying information about a patient
or a family. A restricted access area of this home page or a list server
or newsgroup could allow posting without as much worry about confidentiality.
Obviously, we should not be sharing names, initials or other identifying
information about patients or clients without there consent.
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On on-line list server mail group has been started
by Storm King as an area for discussions by patients, families and friends.
Please let me know what you think.
Return to the introduction page of Caring for
People with Huntington's Disease
This home page is supported by the Department
of Neurology at the Kansas University Medical Center and by the Huntington's
disease support groups.
Suggestions and comments are welcome. Please mail them to me at: Dubinsky@kuhub.cc.ukans.edu