To Gerry
I certainly don't mean any disrespect to CGs and I hope you didn't take my
comment that way, Gerry.  I know you CGs have your own list so you can let
your hair down and speak frankly about us cranky PWP.

Here is what I would like to say:
After retiring and before PD hit I took training for volunteer work on
cancer wards. One thing they told us survivors was not to tell other people
how to do it.

I had a brief stint in the ward because I got  a part-time job.  In speaking
to a young woman whose father was a cancer patient, I told her I had
survived ovarian cancer (my mom survived cancer too and knowing that  helped
me, so I thought it might help her, but her dad was dying unbeknownst to
me).  She said "my father does not have the good kind of cancer"  Well I
thought the kind I had was not too good, but I guess she told me and I
realized I had blown it by not saying instead, "how is your dad doing?" or
"how are you doing?"

I think trying not to insist on telling sick people what to do is  good
policy; but you can still tell what works for you w/out beating your head
against a wall or me, when someone asks, "how do you cope?"  I think this
question was directed specifically to PWP, but certainly does not minimize
or rule out the knowledge and experience of the CGs.

I will still go negative on Bush, even if as you think, it is not in the
best interest of the cause.   But I am certainly not negative on you and all
you do for your husband and PWP in general.  The only thing I know about
caregiving was being a part-time CG to my mom while having PD myself and
before that chasing ambulances to the ER since high school.  I can't
possibly imagine what you have been through for 19 years with a spouse with
PD.

I truly apologize if you feel I have demeaned your role in this struggle.
Remember too, we are both teachers and as such we had to learn to take
charge.   If I have slipped again and tried to do that with anyone I am very
sorry.  I  only speak for myself and take full responsibility and the heat
for my positions..
Ray

----- Original Message -----
From: "Greg Wasson" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, August 14, 2005 3:40 AM
Subject: Re: How do you cope?


> Gerry,
>
> I have known you for five plus years and can truly say you have have been
> a mentor to me - a source of inspiration and a voice of common sense.
>
> Ray,
>
> We don't know each other personally, but we worked together on the Prop 71
> campaign and with the Stem Cell Action Netwrok. And I have followed your
> activities through this listserve. I admire your grit and determination.
>
> In my book, you both do a helluva job for this community. Thanks.
>
> Greg
>
> Gerry Haines <[log in to unmask]> wrote:
> Also, participate in Clinical Trials for PD, my husband has done 10 of
> them
> over the years and some are really difficult to finish, but he has. I have
> spoken at many Support Groups and have had people (withPD), come back to
> me and
> tell me for the first time in years, they feel like they are doing
> something
> to fight this disease. My point, do whatever you can, don't let this
> disease
> defeat you, and yes, I don't have it, (as Ray told me), but believe me I
> have
> been through every step of this for 19 years.......
> Gerry
>
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