Dear Olga--- welcome to PIEN list. Here are a few suggestions from
my files to help with daily living.
***********
Dear Friends---especially those living outside the continental USA-----
I was concerned that often our "overseas" (that is non-USA) members may
not have access so easily to PD publications and resources for information.
Thus, I inquired of the National Parkinson Foundation (Miami,
Florida) whether
their excellent pubs might be available to folks outside the USA and what
the costs would be.
Today I received the following response:
>Hello:
>Let's try it on the honor system.
>We will send the literature along with an invoice for the cost of
>shipping the package. The information as always is free.
>Please have these requests marked somewhere (Attention: M.
Alicea/Care)
I would encourage listmembers to take advantage of this excellent resource.
I expect that pubs can be ordered by e-mail, so that not even a
long-distance phone call is required. The e-mail address is :
NPF Mailbox: <[log in to unmask]>
Don't forget to say "Attention: M. Alicea/Care"
For your information, a few of the topics covered by their pubs are:
"Patient Perspectives on Parkinsons" by Sid & Donna Dorros, "Practical
Pointers for Parkinsonians", "Nutrition Matters" (abridged from Kathrynne
Holden's book), "Fitness Counts"(exercises), "The Parkinson Handbook--a
Guide for Patients & Families", "Speaking Out"-( on speech & swallowing ),
"Medications"
If you are interested in a particular subject, include that in your e-mail
message and ask if they have something about it.
***********
ALSO this--
If you haven't tried using John's ways to finding archive and other
materials, do go to <http://parkinsons-information-exchange-online.com>
You will be amazed at the ease of searching and finding what you need.
Thanks, John!! See John's 62200 post below for more information.
*********
Care-Giver Handbook and the Algorithm....
these two items have been
moved online at:
http://www.ionet.net/~jcott/homepage/archive/patp.html
The printable version of both are available at:
http://www.ionet.net/~jcott/homepage/archive/ct.html
janet patterson' site with access to pien, etc
<http://www.geocities.com/SoHo/Village/6263/>
----------
From: John Cottingham <[log in to unmask]>
To: [log in to unmask]
Subject: P-I-E-N-O Announcement
Date: Thursday, June 22, 2000 2:08 PM
The P-I-E-N-O Parkinsn Maillist page has NEW added features. If you haven't
visited in a while, try it.
http://parkinsons-information-exchange-network-online.com/parkmail/maillist.html
If that address wraps to two lines in your email, it won't work so try:
http://parkinsons-information-exchange-network-online.com
and follow the link to the Parkinsn Online page.
National Parkinson's Organizations have been added for national as well as
international.
If you are an international member of an organization that has a website
not listed under the National Parkinson's Organizations, click the Send
Mail to Webmaster button and send me the URL.
*************
I hope this may be helpful to you.
Olga wrote in part---
>My name is Olga Maria, I'm writing you from Hungary, Europe. I'm 49,
>married, have two daughters (26 and 24), one dog and two cats.I
>joined your list just a few days ago. I have had PD for 10 years,
>but it took the doctors almost 7 years to diagnose me and in that
>time wrote me off as a nervous person with several rheumatological
>and unknown problems. Two years ago they put the name of my illness,
>but it was not at all the name I wanted, I expected something better
>that could be fixed and stopped. For a long time I was very
>depressed (sometimes I still am) but after a while I adjusted to PD
>and I try to live a quite normal life - if a normal life is
>possible wirth PD. I mainly have symptoms (tremor and rigidity) on
>my right side and a little on my face, too. I have problems with
>writing, going upstairs and downstairs, doing my work at home, and
>there are days when I even am unable for example to cut a slice of
>bread, I cannot speak for longer time and my voice has changed, many
>times I am not able to eat or drink normally, etc. I often have
>extraordinary strong pain in my neck, shoulders, spinale column and
>limbs, hardly I can sleep over a night, I dream nightmares. I do
>also have almost all of the secondary symptoms. My illness
>progressed to that point that I took disability retirement in
>January 2000.
>Here in Hungary we use the same meds as you do, but there are
>problems with informing the patients. All I know about PD is from
>the USA and Canada, via internet. I dare say that on our mother
>tongue people can get zero information on their own illness.
>
>SNIPPED
>Any information and practical advice on life style, what to eat,
>eating and meds and vitamins or others - mainly their relation and
>effect on my PD and on my body functions, would be highly
>appreciated.
SNIPPED
--
Camilla Flintermann, former CG for Peter 83/70/55
Oxford, Ohio
<[log in to unmask]>
on the web at http://www.geocities.com/camillahf/index.html
and also at http://members.tripod.lycos.nl/genugten/flinterm.htm
"Ask me about the CARE list for Caregivers of Parkinsonians ! "
And visit the CARE webring at http://www.pdcaregiver.org
----------------------------------------------------------------------
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In the body of the message put: signoff parkinsn
