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Hi William and William, Wow! You two have some great ideas to form advocacy and support on the list in a more agressive manner.... I'll be surprised if this doesn't wake a few folks up.... Getting back to W. Harshaws idea of pushing DBS.... Any other takers? Best regards ........ murray On 4 Mar 2001, at 17:39, William Taggart wrote: > 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? > ******** [log in to unmask]