>Pray for us!  This is quite an interesting time.
>Pam Ebarb, CG for Jean/68yo, PD 10+/Shreveport, LA

Praying for you both Pam, "interesting time" is one way of
describing it :)

How are both of you?

>both be pretty stressed by all this with the meds.  I wonder if it might help
>her to hear what Peter's neuro finally told us--that "you can adjust one pill
>less or more" with the prescribed dose. In other words, the patient can try
>what works for her/him, but there_are_limits to this experimenting. This

Very sensible advice, Camilla. But then, yours usually is!

>Thanks again to all you wonderful people. Perhaps the most wonderful thing
>about Parkinson's disease for me is what it has taught me about people,
>mainly about the incredible strength and empathy that exists.

Debbie, I was saying pretty much the same thing to Heather - that
it might be interesting to do a study of the needs of CPs and CGs
in all the countries that the list members come from. I suspect
the study will reveal far more similarities than differences.

>I smile whenever I think about the people I have met thru this, for they
>[log in to unmask]
>debbie

They're like family. In some ways, a "better" family than real
family.

>Here in Australia two other companies have recently started marketing =
>carbidopa-levodopa at cheaper prices.  They are called Kinson(marketed =

Do you find the generics as effective?

A local company makes a Sinemet clone, Syndopa, but we didn't
find it so effective. Must be something in the synthesis.

Rajesh, if you're reading this, could you pls re-send your msg.
Problems with GIAS - that's VSNL's Internet service. Saved your
msg, deleted it, then discovered there was an error writing to
device. And I can't find your email address. Sorry.

VSNL (for those who aren't from India, that's our telecomm
service, govt owned and the sole ISP as of now) is a pain!
Yesterday, they decided to mess around with their implementation
of ZModem; today, I spent 2 hrs trying to download the PARKINSN
digests, before finally calling them. The first time they
suggested using Kermit (on our lines, you *need* Zmodem, with
auto-resume), the second time, which was 20 min later, they
finally admitted to messing around and said they'd restored the
old ZModem 5 min back.

Rajesh, Patrick and anyone else with queries about PD in India
(apologies to those from other countries ... this might take you
down memory lane, though, since we're in a rather primitive state
as compared with you):

Sinemet is imported in bulk and repackaged and sold. It comes in
the category of "life-saving drugs", so the duty is minimal.
Sinemet CR isn't imported, leave alone made locally, but you
*can* get it in Bombay - the airline staff bring it in. My guess
it would be cheaper for you to continue sending it. Bromocriptine
IS made here - as Proctinal, by Biddle Sawyer (I think). Maybe
Sandoz also.

Sun Pharma makes a l/c dopa combi - Syndopa. My mother didn't
find it as effective as Sinemet, though.

I asked a friend, who is head of neurosurgery at KEM, about
Pallidotomy - he says that there are 2 doctors in Madras - V
Balasubramaniam and S Kalyanraman, both in private practise - who
do the procedure.

*He* said that with the advent of the new drugs (amantadine etc),
the surgical procedure had become redundant, which is the
opposite of what the members of this list seem to feel. In all
fairness, PD is not a major area of interest for him. One of
these days, I'll try and talk to Dr Mohit Bhatt (Jaslok), who's
supposed to have specialized in PD.

I know of 2 Parkinson Trusts which have just been set up - one in
Bombay and one in Delhi. Neither is particularly active, but I
guess they soon will be. If they just manage to distribute
patient education booklets, it would be a major accomplishment.

It's been *pouring* the past 2 days - and Patrick, the monsoons
don't make Bombay green, the way they do with Cochin (which, from
all acoounts, doesn't need the monsoon to be green!). I want the
sun back!

Sarita

>Poster:       Camilla Flintermann <[log in to unmask]>
>Subject:      Re: Olympics
-------------------------------------------------------------------------------
>Pam Ebarb--my eyes got teary too--and so, you may have noticed , did
>those of President Clinton! It was really neat to see Ali, tremor, mask and all
> do the honors--what a wonderful tribute to him as  athlete  and man.

I suspect so did those of everyone on this list. Very touching.

>From:    Bob Chapman <[log in to unmask]>
>that everybody is talking about it and the fact that Ali
>has Parkinson's Syndrome. I would like to send an e-mail
>to NBC Sports and let them know there is a bill pending a
>hearing in Congress to find a cure or effective treatment
>of Parkinson's. Perhaps they would mention it on
>international TV.

I think this is a good time to send an info-pack to major media
sources - press, TV, and whoever else. In fact, if everyone on
the list chips in, we could cover a significant number of sources
in a number of countries.

The info-pack would point out the following:

- the most touching part of the Olympics opening ceremony on TV
was the sight of Mohammed Ali lighting the torch, with his right
hand shaking uncontrollably.

- the reason his hand was shaking uncontrollably was because he
has had PD for the past ## years - you probably know this.

- However, there are many things about PD you might not be aware
of; which is why we are sending you this info-pack, with the hope
that you will give suitable coverage to the contents.

- We are the members of PARKINSN - a email discussion list for
the parkinson community. We come from ## countries and are from
## to ## years old. We are drawn together by the commonality of
our experiences and the consequent determination to do something
about it.

- PD affects about 10% of the population - a little less than
asthma

- There are some differences - unlike asthma, PD does not run in
families. however, it *affects* families. Often the pressures can
break up families.

- there is no cure for PD, and only a handful of drugs, all with
severe side-effects.

- Research into the disease has been --- (severely hampered due
to the lack of funds - PD is seen as a bear-it-old-age-illness??)

- PD is a progressive illness; the degradation is --- and the
human suffering immense.

- It is also estimated that the average PD patient spends some
--- in medication over a ---year period (the average span of the
illness after diagnosis and until death)./ the average PD patient
costs the govt --- over a ---year period (the average span of the
illness after diagnosis and until death).

- There is an appalling ignorance about the illness. Many cases
are not diagnosed and merely dismissed as old age

- It need not be so. With the proper inputs, it is estimated that
a cure is about 5 years away.

- Apart from those directly affected by PD, the findings of
research into PD will help the broader community affected with
Alzheimers, PSP, MS, HD etc.

- comparitive figures for funding for other, better-known
ailments?

- something on the Udall bill

- we have cleared the first hurdle - something about it and how
it was achieved

- help us --- (elaborate on the current goal) - it might affect
you tomorrow

- how to send msgs.

- from the list moderators, on behalf of the listmembers and the
entire parkinson community

Maybe we should first ask for permission from Ali to use his
name, but if he's like the average PDer, he'll be happy to have
his name used if it means more attention paid to the illness.

The references to asthma are because I'm writing a patient
education booklet about asthma. If you can think of a better
example, bung it in, by all means.

Some gaps need to be filled in.

Where should the postcard campaign fit in?

It makes for a good human interest story. If we are factual and
positive, I think our efforts would get coverage.

I'd hate for PD to be turned into the Media circus that Aids is,
but let's face it, Media coverage can be a potent weapon in
getting funds. That's probably why Aids is funded out of
proportion to its prevalence (personal opinion).

Sarita