A Town Hall Meeting isn't my complaint. Its timing, delivery and content
are my concerns.
I agree with Maxine. The program is more than likely connected to the
doctors' schedules.
Certainly, no schedule will please everyone as Maxine indicated.
What I believe is missing is the lack of recognition for Patients and their
Caregivers. They should be valued for their knowledge and experience. They
live in the trenches! This idea that it is an imperfect world and we can
therefore excuse those in the medical field who aren't trained or attuned to
PD and its family of many symptoms is not to be excused in my mind.
I cannot help but wonder what would happen if doctors specializing in PD
and its additional family of stragglers were assigned to live in a PD.,
etc., household for 6 months. It is a topic to ponder. That's for sure!
As for me, I'm a QUALITY OF LIFE person. Unfortunately, I don't see it
improving. It is full of medications that don't work for many; frustration
brought on by often inadequate medical care and fear of tomorrow.
Thankfully, there are many bright stars on the PD horizon. One of the
brightest is Maxine. She wouldn't mentioned that she drives up and down
the highways from Grass Valley to the San Joaquin Valley educating nurses,
doctors and anyone who will listen on the care of those stuck in the PD
warp. If there is an answer out there, she'll find it!
E
----- Original Message -----
From: "Maxine Krugman" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, June 04, 2006 9:03 AM
Subject: Re: Parkinson's Disease Town Hall Meeting
> i didn't see a great deal of emphasis on 'free' but the time of the
program
> is universally difficult for parkies and the caregivers who might be
helping
> to get them going. from the other side, the docs must be looking at the
best
> time on their schedules. it's a great idea for a program, and edith is
> correct that people should get the information from their own docs, but
reality is
> otherwise. here in sacramento we are grateful for the idea of this town
hall
> and plan on our own for northern california. the times will be adjusted
but
> the idea is grand. in all the programs we have done over the years, there
has
> never been one where we don't hear from tons of people for whom the time
is
> not good, so we all do the best we can.
> maxine
>
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