At 07:50 AM 4/27/98 , Bill Heit wrote:
>
>One problem is that the people "in the trenches" (PWPs & CGs) are, for the
>most part, not privy to that information.  So how can we pound anything home?
>
>Regards,
>WHH 54/18
>
 I've been chewing this over for quite a while, so sorry about the late reply.

Excellent point, Bill, and I guess that in order to reach these people, we
must first know who they are, second we must make them aware of us, and
third bring them into the fold.

Also, who are we, us, or "the fold"?  Let's answer that first.  We are the
people who are conscious of the problem and who are working together to
lobby for our cause.  We may be leaders, we may be followers, we may be
activists, we may play a passive role; but when an indication of our
numbers and our strength is needed, we rise to be counted.

There must be some line of communication from any one of the leadership
organizations to each one in "the fold" if they are to be counted.  It is
not enough to be a member of APDA, or a support group, or NPF, or EPDA, or
whatever if you are not counted.  It is enough if you spend ten minutes and
$1.40 in stamps when Barbara Schirloff says "NOW."  (or some equivalent
action for our friends not within the United States.)

"These people" are the persons who have been diagnosed with Parkinson's
(correctly so or not), and the common denominator is that they have seen a
doctor, preferably a neurologist, who has been following this diagnosis.
Or the person may be a partner or caregiver of the patient.  The best
access that we have to these people, the people for whom the list is
created, is at their doctor's appointments.  Probably information
disseminated at the time of diagnosis regarding support groups in
particular and "us" in general is most effective, but a
quarterly/semi-annual update at every appointment would be good reinforcement.

These people could also be persons who are relatives of or who care about
or who work with or who purvey services to or who are otherwise in contact
with a Parkinsonian or his/her family, if the Parkinsonian passes the
message along.

It is then my first point that the Parkinsons patient be set into the
motion of contacting one or more national organizations, a support group,
and the resources on the web, in written literature, and in a library.
This can be more important to a patient's long term well being that the
medication that the doctor prescribes and far less expensive too.  Doctors
cannot force their patients  to do this, but they ought to prescribe it,
not just suggest it.  Getting doctors into the loop is the place to start,
and this means sell the doctors first.

We must make "these people" aware of us.  To me, this means that the
various organizations mentioned must have an easy way of getting found.  I
found my support group through a radio advertisement which offered, "For
more information call...."  I can't say it's wrong, because it worked - but
it took ten years after diagnosis.

In the Dallas area, at least, there is a noted lack of minority people in
our support group.  Many reasons are possible, one of which has got to be
that they don't know that we exist and that we offer our services
(including twice-weekly physical therapy) without regard to race, creed,
color, sex, or the (lack of) ability to contribute toward their cost.

I remember being given an APDA book by my doctor on my first visit - but
that was it.  I was in disbelief at the time, the beginning of a long
period of denial, and I didn't take it seriously.  To me at that time, APDA
was just another money-hungry, disease-oriented organization like the
American Heart Association or the American Cancer Society.  (BTW, my
perception has since changed.)  Why should I be interested?  And my doctor
didn't steer me to a group of people who could have helped.


So my second point is that our organizations and "our fold" should be
presented to the patient, new or old, not as so much overhead, but as a
source of the assistance that they will need.

Having brought ourselves to a patient's attention, and having presented
ourselves favorably to him/her, the prospective member of "our fold" is not
with us until (s)he has made the commitment -- that is, until the sale is
made.  Our problem is made more difficult by the perception of the
Parkinsonian as being older and less in control than the newly diagnosed.
"Why would I want to associate with them?" the newbie asks.  I'm not
certain how much of the literature that I've seen addresses that, but there
are "young Parkinsonian" groups set up for just that reason.

So my third point is that our approach to "these people" who are not a part
of "us" should be more aggressive in its nature than just a piece of paper
thrust into the hands of a person leaving his doctor's office.  It could be
a regular newsletter. It could be a television presentation or a videotape.
 It could be a continuous barrage of Parkinson's news.  But for many
prospective members of "our fold," it takes a mentor to take them under
their wing and to get them involved.  This means personal effort on our part.

Summarizing, the first point is to get the newbie PWP (and others outside
of our fold) aware of our existence, presumably through his doctor.  But
the doctor may not pass a list of his patients to an organization, so the
second point is that we must show our presence so that the the PWP outside
the fold will contact us.  And the third point is to convince the PWP
and/or the people in his/her milieu of the importance of keeping in contact
and becoming a part of our fold.  To do this we need comprehensive,
cooperative planning - beyond the scope of this e-mail message.

None of the three points are easy to accomplish.  Who said they would be?

Art  62/12

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 Arthur Hirsch {} [log in to unmask] {} Lewisville, TX {} 972-434-2377
 (nickname on instant mail, ICQ, and chat programs is cutterson)
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   Always Remember This:  Happiness Is Right, So Choose Happiness
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