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>>I have been asked why go to the walk in NYC for PD when I can use that
money and donate it to the same foundation?? <<

Good question.  (Anyone who likes to start List Wars please read no
further.)

If you are highly motivated to raise money locally for PD research or
wish to give to a deserving charitable organization and you view
spending money on travel expense as an unnecessary luxury there's no
reason to come to New York for the Parkinson's Unity Walk.

So why bother?

Because it's a powerful feeling to be with people who share something in
common and are commited to bringing about change.  I've talked to quite
a few people with Parkinson's who were ambivalent about the Walk until
they experienced it.  There's something very positive about thousands of
people with Parkinson's along with their families and friends getting
together for exercise, music, food and fun without any embarassment or
fear.  You are with people who understand.  It's a pretty unique situation.

If there was a pill that could give you energy and motivation without
side effects would you as a caregiver or PWP ask for a prescription?  I
believe exercise, activity and social interaction can be that miracle
drug when it comes to PD.  OK, it's not a cure and it may not alleviate
your symptoms all that much but the positive effect is very real for so
many people.  I know.  I've seen them.  I've met them.  I've worked with them.

The Parkinson's Action Network Advocacy Forums (now MJF Foundation
Forums) have served to inspire hundreds of PWPs over the last six years.
 It's all about the people.  Forums, seminars, conventions and support
group meetings are all opportunities to meet people - people who share
your experience and who are looking to work together to improve their lives.

I have turned down invitations to attend charitable events when I
thought my travel costs  could be better spent on the cause.  I have no
qualm with anyone who would save their money and give more to the effort
to cure PD.  Heaven knows there are not enough people who have that kind
of energy and commitment.  We need everyone we can get.

But please don't feel guilty because you will be spending money to
travel to an advocacy forum - or a symposium - or a fundraising event.
If you are able to take that experience and help yourself and others
it's a win-win situation for everyone.  Who knows, you might even feel a
whole lot better when you get home.

Have a great Sunday on September 24th -  wherever you choose to spend it.


nancy wrote:
>
> 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