Today we had a scheduled meeting with an aide in the district office of
our Rep.,Juhn Boehner, who was off in Colorado. I don't know if this will be
helpful to others in the same process. We planned to have a Parkinsonian who is
active but VERY dyskinetic and frozen at times go along. (He joked that he'd
get dys and freeze on their floor!) This morning however he was too stiff
to attempt it, so I (caregiver, former group leader) and the social worker
from Senior Center who is our facilitator went. We had prepared 3 pages to
present and then leave as a handout, giving 1. nature of PD, occurence, etc.
2. Cost estimates etc, 3.Summary of features of Udall bill. Also a long list
of PD symptoms(to educate the young aide who knew zilch,and maybe the Rep.)
and a flyer about a symposium planned in our area to which we invited them.
We had about 40 minutes, and found him receptive, sympathetic and as expected,
noncommittal. Showed him Rep,B's form letter to us indicating "awareness" of
need, etc---got the lecture re: "so many good things we can't do--of course
it's cost effective, but we have to balance the budget..." Cost was definitely
the main focus for them. If it's true that the 100 million is not NEW but
re-channeled money from NIH budget, that should be emphasized. BTW, the aide
remarked that it was easy for Dems to cosponsor, as they were in the minority
and couldn't be "accountable". Lots of comments from him about the need to
"not discourage the private sector by having gov't do too much",etc. We took
a camera and had pix taken to use in the local (weekly) paper. Will followup
with letter to editor explaining the bill, PD, etc. Will follow up with calls
to the other 5 support groups in his district and try to get them to call
or write him. He's #4 man now in the Repub. party and VERY conservative, so
we'll just have to hope for the best. They really discounted the fact that the
sponsors were mostly Dems, so I pointed out that Hatfield who introduced the
bill was a Republican. Had a cover letter stressing need for him to sponsor.
Any other suggestions for followup will be welcome.
Camilla Flintermann, Oxford,Ohio Support Group
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"Even arrival is also a point of departure"
New York Yearly Meeting Epistle, 1995
