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