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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]
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February 1996, Week 3 February 1996, Week 2 February 1996, Week 1 January 1996, Week 5 January 1996, Week 4 January 1996, Week 3 January 1996, Week 2 January 1996, Week 1 December 1995, Week 5 December 1995, Week 4 December 1995, Week 3 December 1995, Week 2 December 1995, Week 1 November 1995, Week 5 November 1995, Week 4 November 1995, Week 3 November 1995, Week 2 November 1995, Week 1 October 1995, Week 5 October 1995, Week 4 October 1995, Week 3 October 1995, Week 2 October 1995, Week 1 September 1995, Week 5 September 1995, Week 4 September 1995, Week 3 September 1995, Week 2 September 1995, Week 1 August 1995, Week 5 August 1995, Week 4 August 1995, Week 3 August 1995, Week 2 August 1995, Week 1 July 1995, Week 5 July 1995, Week 4 July 1995, Week 3 July 1995, Week 2 July 1995, Week 1 June 1995, Week 5 June 1995, Week 4 June 1995, Week 3 June 1995, Week 2 June 1995, Week 1 May 1995, Week 5 May 1995, Week 4 May 1995, Week 3 May 1995, Week 2 May 1995, Week 1 April 1995, Week 5 April 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Week 5 June 1994, Week 4 June 1994, Week 3 June 1994, Week 2 June 1994, Week 1 May 1994, Week 5 May 1994, Week 4 May 1994, Week 3 May 1994, Week 2 May 1994, Week 1 April 1994, Week 5 April 1994, Week 4 April 1994, Week 3 April 1994, Week 2 April 1994, Week 1 March 1994, Week 5 March 1994, Week 4 March 1994, Week 3 March 1994, Week 2 March 1994, Week 1 February 1994, Week 4 February 1994, Week 3 February 1994, Week 2 February 1994, Week 1 February 1994 January 1994 December 1993 November 1993
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