[jeanb]

In the UK when pd orgz ask their pwp volunteers to travel , the orgs also pay for carepartners travel as well. We are not getting this kind of consideration in the US. Or only rarely as in the spect scan trials I take part in.

This is a change that we need to seetake place. Here 2 hard working pwp advocates just traveled to a conference to work and they were not Allowed to have carepartners travel be paid for as well. In Arizona I know of an example where a regional rep - a pwp with adv pd who could not travel alone-asked to have his carepartners travel costs covered so he could Attend A meeting for all regional reps, and his request was denied So be did not go .

I do not understand how NAtional pd orgs can treat their pd volunteers with such a a lack of care , dignity, and consideration. Please follow the UK orgs lead!

[pegleg]

The orgs and the pharmaceutical companies I have worked with , have always offered for me to travel with my caregiver, especially if I have someone waiting on the other end of my trip. But it really isn't safe nor is it wise) for us who have had PD for a while to even attempt to travel this way.

I just wish you could see Paula and me - or Carolyn and me - I am sure that people think we are drunk! And the strongest thing I drink is gingerale! lol

Jean, just ask and I am sure they will pay for your caregiver to go with you. Now, I can understand if one is going out of the country - that would set them way over budget. But I was figuring the other day that I personally had brought in over $200,000 to the orgs with whom I volunteer. That should be worthy of a carepartner's expenses!

Peg

[jeanb]

Peg,

Twice (to my knowledge) a national PD org has in the past told two of its senior volunteers (one chapter president!; and one former chapter president and current regional representative!) that there were no funds for caretakers - to attend an annual meeting for its leadership. So neither of these grassroots leaders attended their meetings. Did PDF offer to pay for and send caretakers for you and Paula? Paula said she paid her daughter's way.

Many PWP volunteer countless hours in many ways. We shouldn't have to beg to see that our needs are taken care of.

No representative from any org has ever asked if I needed a caretaker or told me from the outset that "if you need a caretaker, their way would be paid, too." All I am saying is that is what we deserve.

[paula_w]

Ok so wherever I go there I am or something similar....and here it is...we are not cost effective.

So it depends on who wants to achieve what. The words are everywhere but not given much attention or application. We need assistance with so many things. It makes me giggle now, but Peg reminds me i wouldn't be giggling if i saw how close i came to crashing into the window.....geez.

I almost fell after getting off the bus and warning peg of the curb; the very one I took a few steps toward while talking [ careless multisensory input ]and descrambling- forgetting at least something by now; it was the curb - a doozy of a momentous loss of body control next with desperate /successful at the very last minute recovery and peg saw the whole thing.

good grief it was pretty close, well true story anyway

[pegleg]

I have had an org just say "We have made reservations for you and your husband. . ." but that would make sense when he was driving us to a meeting or presentation. But the drug companies always just assumed they were paying for two (me and the caregiver). Of course, the drug companies have a lot more money than the orgs, but I think you were pointing out that it didn't matter. It is not only courteous, but safer to provide for a caregiver. And how advanced one is might be why they aren't thinking that way. Howwever, they don't KNOW how we are in the mornings or late at night.

And the lead3ers that had to miss a meetiing - well, I just think t hat is awful!

Peg

[jeanb]

Originally Posted by pegleg

Howwever, they don't KNOW how we are in the mornings or late at night.

Peg my dear

I believe we are both talking about people who work for major Parkinson's organizations are we not? If they don't have a pretty clear picture of how the average pwp who has been living with PD for 7 or 10 or 15+ years is doing (in the mornings or late at night), then by golly maybe they are in the wrong job.

Jean