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Greetings Nancy.

I valued reading your words a great deal: they were honest.

I am a cg who would greatly benefit
from a public discussion about this topic,
either on this list or on the CARE list.

If it were discussed here,
you might be pleasantly surprised to learn
that many cg's don't have an "us or "them" approach.
Whether we are a cg or a pwp,
most of us house a basic instinct to care about the ones we love.

You raise 'quality of life' issues
that are difficult to express with the rational linearity of "hard science".
Please consider discussing this on-line.
It might teach us how to help each other better.

Joan U.
(on a grey and foggy Saturday in Canada)

-----Original Message-----
From: nancy <[log in to unmask]>
Subject: donating the money verses going on trip to nyc walk


>Have a question of debate i guess.
>
>I have been asked why go to the walk in NYC for PD ? when I can use that
>money and donate it the the same foundation?? Sees it as 'just another
>way of meeting others with P.D. The person wants to know. I tried
>explaining
>
>1. sponsors will hopefully be sponsoring the walk of the walker going
>there.
>2. Pd'ers isn't one to sit around the house. - emotional response not
>hard science response:)
>3. pd'er feels like even if they raised more than 500. that it would
>still be said then that the PD'er could donate that 500.
>
>
>
>I hear many times how the caregiver needs respite. Sometimes believe it
>or not so does the patient:)
>
>
>research articles supporting
>
>1. positive outcome-  between physical health maintenance of physical
>symptoms of chronically ill population
>
>Have seen research on stress increasing progression of the chronically
>ill , but not outside support systems maintaining or possibly slowing
>the disease process.
>
>2.neuro or other MD support of this venture of PD'er activity level and
>socialization importance of chronically ill population and the
>caregiver.
>AND/OR pertinent information .
>
>Jeeze most caregivers want respite from their loved ones.  My life is
>centered around rehab , exercise, nap, CNN, reading, and snacks. I need
>to be with people too during the work week besides doctors and HHA (no
>offense to docs and HHA), no matter how ill I get:)  I know I am pretty
>ill. I would like caregivers view to on why they may feel this way if
>there loved one goes on a visit without them. How come caregivers are
>supported to get away and the ill person get supported to go to rehab
>when the caregiver is away at a conference. I was told that the
>caregiver is sharing knowledge/research with those in their field. Well,
>I am. Of course I pay for mine and research money pays for the
>caregivers academic trips. However, If we travel together to visit
>universities for our child then that is ok too. Now to me they are all
>important. I feel like the NY trip isn't important 'cause research
>grants aren't paying for it. It's like when the medical community
>thought I didn't have long to live, I got the support of 'travel til u
>drop.' reasoning.  Now that I didn't die on schedule:) I am suppose to
>lay in bed or shop off the internet. Nothing gets said when shoes and
>clothes are bought. Can someone please explain this. Caregivers point of
>view are welcome too. Don't want  or 'us' and 'them' wars, or they don't
>understand arguments please:) I am dealing with a 'Hard Science
>researcher' here. needs Facts and research.  Illness recuperatiion time
>after coming back home may be part of the reasoning of the caregiver,so
>take that into account and/or the view of if a person doesn't work. No
>it isn't that I was just told. And yes I am still going to here how the
>money spent on the trip could be donated instead. Heck I am not giving
>in on this one:)
>
>email off the list please. Don't want a List war here.
>
>thank u
>