It has recently been brought to my attention - and has struck me as
very
strange - that we all seem to have been paying attention to only one
aspect of the Udall Act, ie research. All our time, thought and
efforts,
all our contacts with congressmen and senators have been directed
towards giving more money to research and finding a cure. Important
stuff, of course, but that is not the end of it.
How many of you have actually read the whole act from cover to cover?
If
you're anything like me you probably think it is an immense tome,
filled
with legal jargon, and totally incomprehensible to the average citizen.
On the contrary, it is merely 2 pages long, and extremely clear and
simply stated. And if you look under the section on PURPOSE, you will
find that, yes, it is to provide for the expansion and coodination of
research, but that is not all.
It is also "to IMPROVE CARE and ASSISTANCE for afflicted individuals
and their family CAREGIVERS"
On the second page, the following discretionary requirements are
listed:
(I summarise)
1 Training programs for SCIENTISTS and HEALTH
PROFESSIONALS
2 continuing EDUCATION ro health professionals
3 dissemination of INFORMATION to the public
4 a NATIONWIDE DATA SYSTEM - derived from patient populations
with PD
and comparing with general populuations
5 a Parkinson's Disease Information Clearinghouse
6 a national EDUCATION program ...on PD and the care of those
with PD.
So much of what we have been discussiing recently on the listserve
actually
falls within the categories on this list, ranging from sorting out SSDI
problems, to getting adequate care and consideration for PPD's peculiar
needs in hospital situations, to assisted living facilities for young
onset pwps. According to the way I see it, all these issues should be
being addressed by the powers that be, whoeover they are - NIH?
And those are just a few that personally affect me.
I don't see any sign of these matters being attended to . Am I missing
something?
Any comments, anybody, anywhere?
Hilary Blue (49/16)
