William,
Exactly! Perhaps we members of this list could collaborate to promote the
ideas you're putting forth, plus a few others.
Until and unless there is a cure, (always "in five years") we PWPs need
better, more systematic and organized, resources for optimizing the quality
of our lives.
Would you like to "chair a committee" to get a systematic info flow going?
If so I'd work with/for you to organizing the accumulating and dispensing of
correct and dependable info on such things needed by PD's as:
medicines
therapies
surgeries
nutrition
exercises
products, accessories
symptoms
clinical trials
PD FAQs
sources & contacts
books
case histories, motivational
support groups
etc & other
I'm here to help!
Bill - PWP
New Joisey, USA
-----Original Message-----
From: William A. Harshaw [mailto:[log in to unmask]]
Sent: Sunday, March 04, 2001 7:40 PM
To: [log in to unmask]
Subject: A Fundamental Question
A considerable amount of energy is being devoted, rightly in my opinion, to
new possibilities in discovering the causes and developing cures for PD.
We still do not know what causes cell death in the brain. When the cause of
the death of the dopamine cells in the substantia nigra is discovered and
the reason demylenation occurs in MS, Parkinson's patients and MS patients
and their caregivers will rejoice. But their rejoicing will be a selfless
one because many of them will be too far advanced or too old to benefit from
the discovery.
And just because the cause(s) has been discovered, it does not mean that
cures will be found immediately. Well, in a perfect world they might be,
but we all know that our world is not perfect.
What this is leading up to is the utter lack of attention that is being paid
to therapy access. There are palliative therapies in the market place that
work and work well - effective and efficacious to the rigorously-minded.
DBS neurosurgery, for example. Why are there not list members pursuing the
expansion of this real winner.. Some of te things that could be done:
- lobby for more training places for neurosurgeons and the
subspecialty, functional neurosurgery
- lobby for more funding for these procedures
- lobby to ave them universally approved by HMOs for reimbursement
purposes
- ensure that both neurologists and neurosurgeons use formal
checklists to determine who goes on the surgery list
- ensure that hospitals make funding available from their global
budgets
Or am I all wet?
