This is the first time I'm posting to this list, so I'm a bit
nervous about doing something stupid ("put foot in mouth, echo
globally"). Apologies in advance, just in case.
Date: Fri, 7 Jun 1996 09:25:40 -0400
From: Sandra Handler <[log in to unmask]>
Subject: Surgery
>As a new suscriber whose husband has Parkinson's, I am interested in
>alternative treatments that may be of benefit to him.
Sandra, here in India, a lot of people are talking about Reiki. I'm not
sure what this is, but they say it helps people with terminal
illnesses be more at peace with themselves. A friend of my
mother, who was recently diagnosed as having cancer of the brain,
said it has helped her a lot.
If you are interested, I'll try to get you more information.
Sarita Agarwal
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Date: Fri, 7 Jun 1996 10:42:27 -0400
From: Jim Hyland <[log in to unmask]>
Subject: potential new supporters
>researched with PD funding from the Udall legislation. What's good for PD
>will almost inevitably be good for HD.
Ditto PSP, Alzheimers, MS and all the rest of them. Ditto
patients outside of America (illness knows no geographic
boundaries) - I'm from India, my mom had PSP for 5 years, I only
came to terms with it after receiving information from an
American support group, the SPSP.
Sarita Agarwal
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Date: Fri, 7 Jun 1996 17:28:02 -0400
From: [log in to unmask]
Subject: Re: potential new supporters
>I read your posting and I'm very interested in your idea. Right now I am
>working on a postcard campaign to swamp our Congressmen with Postcards asking
>them to support the Udall bill. I believe that PD sufferers as well as HD,
>MS, and Alzhimers sufferers will all benefit from the research going on in
>PD.
PSP too.
>The post cards have a picture of Morris Udall on one side and a brief message
>on the other. If you let me know the name of the congressmen you are
>targeting I will even address and stamp them for you. All you would have to
>do is Sign your name and return address, and drop it in the mail.
>We would like to cover every desk in the Capitol with Udalls picture.
>Let me know if you want to send a card.
I do, but does it make sense? I'm writing from Bombay, India and
my mom had PSP (she died a few days ago).
How about an email campaign? It would be a lot more global too.
Or maybe letters to publications - papers and magazines - asking
people to write, call or email support.
A fill-in-form on the PD Web and other popular medical sites?
A notice in a popular mailing list like Tourbus?
Sarita Agarwal
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Date: Sat, 8 Jun 1996 02:33:10 -0400
From: [log in to unmask]
Subject: Re: potential new supporters
>Anyone who can enlist the help of any other organization, be its
>Huntingtons Disease, veterans group, anyone, please do so. These
>next weeks are crucial. Now that we have amassed such support in
>Congress, to fall short would simply be tragic.
I'd written you some days ago. Since then, my mother, who was
suffering from PSP for the past 5 years, passed away. She
suffered a lot during these 5 years, but the end was sudden and
peaceful, for which I'm grateful. I intend to continue
subscribing to this list - at least until the volume of messaging
becomes too much to handle.
A Parkinson's Trust has - just - been set up here, with about 100
people having expressed an interest in becoming members. You can
count on their support.
Some ideas for getting more support for your campaign:
Put up a notice on websites like Pharminfonet, asking for
support. http://www.pharminfonet.com
How about an email campaign? It would be a lot more global too. I
wonder if your senators realize that?
Or maybe letters to publications - papers and magazines - asking
people to write, call or email support.
Enlist support groups and mailing lists of diseases which would
also benefit from a cure for PD - HD, PSP, Alzheimers and the
like. Many of them are already fighting their own battles for
funding and will gladly support you.
A fill-in-form on the PD Web and other popular medical sites?
A notice in a popular mailing list like Tourbus?
Remember, networks don't just connect computers, they connect
people too (actually, PARKINSN is a powerful example of that - I
intend to write about it in a local computer magazine, as an
example of the Internet being more than just a techie toy). Use
the global reach of the net to lend more voice to your msg.
Sarita Agarwal
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