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Dee, I agree with your comments re the Barrow. Dr. Holly Shill, the 'Chief
Investigator" WAS going to be my neuro, but dropped me when I had to cancel
my first appt due to inability to get there. I was originally referred to
Dr.Mark Stacey who went to Vanderbilt University shortly before I moved to
AZ. I'm going to the AZ Medical Clinic near my home and Dr. Pagano is my
neuro. Apparently specialists are in short supply here in AZ. After almost
4 months I finally got this appt with him last week.
Do you live in AZ?
Ray---- Original Message -----
From: "Dolores Buente" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Monday, April 25, 2005 6:02 AM
Subject: Re: Training document for MD's - National Database
> Thank you Ray and Linda for your information concerning the Barrow
> Neurological Institute's data base and the California Parkinson's Disease
> Registry.
> While I am not familiar with California's registry, I am participating in
> the
> Barrow database program and have twice now filled out their questionnaire.
> I
> believe the first time I completed their questionnaire was about 6 months
> ago. I
> just completed and submitted their most recent questionnaire a few days
> ago.
>
> while I feel that the Barrow's questionnaire serves a purpose in gathering
> data that is pertinent to people living with Parkinson's disease I feel
> that it
> falls very short in asking personal history questions that could determine
> a
> link between environmental/genetic causes of Parkinson's.
>
> Upon completing the 'first round' questionnaire, I notified the staff at
> Barrow's that I thought their survey was lacking in this respect. They
> responded
> that they were attempting to refine and improve their project and it would
> take some time to make needed changes. Upon completing the 'second round'
> questionnaire (which I thought was an improvement over the first) my
> comments to
> Barrow's were that I still think that the survey questions lean toward
> information gathering that better serves pharmaceutical/physician interest
> over PD
> cause/cure interest.
>
> I've printed a copy of my completed questionnaire and will keep it on file
> so
> that I will have a reference to future questionnaires. I am hoping that,
> in
> time, we will be seeing questions on the survey that will pertain to
> lifelong
> personal history data gathering such as
> a) chemicals that you've been exposed to/or worked with.
> b) trauma to the head (any incidents that have occurred since infancy)
> and
> any serious symptoms as a result of the injury.
> c) viral or bacterial infections since infancy (herpes infection,
> whooping
> cough, polio, encephalitis, etc.)
> d) family members who have/have had neurological disorders (Parkinson's
> disease, essential tremor, epilepsy, Alzheimer's, Huntington's disease,
> etc.)
> e) age at which symptoms of Parkinson's disease presented and factors
> that
> influenced your life prior to/or at the time the symptoms presented. (
> stress,
> trauma (either emotional or physical) menopause, illness, surgical or
> medical procedure which involved anesthetics, work or leisure activities
> that
> involved use of pesticides or chemical agents.
>
> I'm sure this list could be expanded greatly by experts in the field of
> Parkinson's research and I feel that these are the type of questions we
> should be
> addressing rather than "Does your pharmaceutical health plan cover generic
> or
> brand name drugs?" "What is your co-pay?" "What is your yearly income?"
> "How
> far do you travel to attend aquatics classes?"
>
> I hope that this post does not sound cynical or unappreciative. This type
> of
> research is very important to the Parkinson's community and I am grateful
> for
> its implementation. I just think that there is room for improvement and
> that
> this tool can have immense power in answering important questions about
> Parkinson's disease if it is used to its fullest potential.
>
> Dee
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
> mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
>
----------------------------------------------------------------------
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Week 4 October 1997, Week 3 October 1997, Week 2 October 1997, Week 1 September 1997, Week 5 September 1997, Week 4 September 1997, Week 3 September 1997, Week 2 September 1997, Week 1 August 1997, Week 5 August 1997, Week 4 August 1997, Week 3 August 1997, Week 2 August 1997, Week 1 July 1997, Week 5 July 1997, Week 4 July 1997, Week 3 July 1997, Week 2 July 1997, Week 1 June 1997, Week 5 June 1997, Week 4 June 1997, Week 3 June 1997, Week 2 June 1997, Week 1 May 1997, Week 5 May 1997, Week 4 May 1997, Week 3 May 1997, Week 2 May 1997, Week 1 April 1997, Week 5 April 1997, Week 4 April 1997, Week 3 April 1997, Week 2 April 1997, Week 1 March 1997, Week 5 March 1997, Week 4 March 1997, Week 3 March 1997, Week 2 March 1997, Week 1 February 1997, Week 5 February 1997, Week 4 February 1997, Week 3 February 1997, Week 2 February 1997, Week 1 January 1997, Week 5 January 1997, Week 4 January 1997, Week 3 January 1997, Week 2 January 1997, Week 1 December 1996, Week 5 December 1996, Week 4 December 1996, Week 3 December 1996, Week 2 December 1996, Week 1 November 1996, Week 5 November 1996, Week 4 November 1996, Week 3 November 1996, Week 2 November 1996, Week 1 October 1996, Week 5 October 1996, Week 4 October 1996, Week 3 October 1996, Week 2 October 1996, Week 1 September 1996, Week 5 September 1996, Week 4 September 1996, Week 3 September 1996, Week 2 September 1996, Week 1 August 1996, Week 5 August 1996, Week 4 August 1996, Week 3 August 1996, Week 2 August 1996, Week 1 July 1996, Week 5 July 1996, Week 4 July 1996, Week 3 July 1996, Week 2 July 1996, Week 1 June 1996, Week 5 June 1996, Week 4 June 1996, Week 3 June 1996, Week 2 June 1996, Week 1 May 1996, Week 5 May 1996, Week 4 May 1996, Week 3 May 1996, Week 2 May 1996, Week 1 April 1996, Week 5 April 1996, Week 4 April 1996, Week 3 April 1996, Week 2 April 1996, Week 1 March 1996, Week 5 March 1996, Week 4 March 1996, Week 3 March 1996, Week 2 March 1996, Week 1 February 1996, Week 5 February 1996, Week 4 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 1995, Week 4 April 1995, Week 3 April 1995, Week 2 April 1995, Week 1 March 1995, Week 5 March 1995, Week 4 March 1995, Week 3 March 1995, Week 2 March 1995, Week 1 February 1995, Week 4 February 1995, Week 3 February 1995, Week 2 February 1995, Week 1 January 1995, Week 5 January 1995, Week 4 January 1995, Week 3 January 1995, Week 2 January 1995, Week 1 December 1994, Week 5 December 1994, Week 4 December 1994, Week 3 December 1994, Week 2 December 1994, Week 1 November 1994, Week 5 November 1994, Week 4 November 1994, Week 3 November 1994, Week 2 November 1994, Week 1 October 1994, Week 5 October 1994, Week 4 October 1994, Week 3 October 1994, Week 2 October 1994, Week 1 September 1994, Week 5 September 1994, Week 4 September 1994, Week 3 September 1994, Week 2 September 1994, Week 1 August 1994, Week 5 August 1994, Week 4 August 1994, Week 3 August 1994, Week 2 August 1994, Week 1 July 1994, Week 5 July 1994, Week 4 July 1994, Week 3 July 1994, Week 2 July 1994, Week 1 June 1994, 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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